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The results are in . . .
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|
| William R. Thompson 2005-05-27, 8:55 am |
| The doctor's office called earlier today with my
test results. Whatever is going on, it isn't lupus.
The tests he ran included ANA, SSB, Smith and
scleroderma, as well as a blood panel and urine
tests. So it's back to the guessing games on
this whatever-it-is.
I'm glas I don't have lupus, but it would have
been nice to know what's going on.
--Bill Thompson
| |
|
| "William R. Thompson" wrote:
> The doctor's office called earlier today with my
> test results. Whatever is going on, it isn't lupus.
> The tests he ran included ANA, SSB, Smith and
> scleroderma, as well as a blood panel and urine
> tests. So it's back to the guessing games on
> this whatever-it-is.
>
> I'm glas I don't have lupus, but it would have
> been nice to know what's going on.
Hi Bill,
Gosh when I reread your first post, It almost cannot be that you don't
have Lupus.
Frustrating not getting answers.
There's a few things you could do.
Keep posting a summary of the situation and add items that you may not
have mentioned before.
(I need a refresher <g> )
Try sci.med with same summary.
Or both. I'm sure the others don't mind you being here.
I think it's a good place to be until we find the *right* support
newsgroup for you.
J
| |
| William R. Thompson 2005-05-28, 8:55 am |
| J wrote:
> "William R. Thompson" wrote:
[vbcol=seagreen]
[vbcol=seagreen]
> Hi Bill,
> Gosh when I reread your first post, It almost cannot be that you don't
> have Lupus.
> Frustrating not getting answers.
Definitely. I spent the week before the visit getting some
sun every day, and I was definitely feeling the effects.
Lots of fatigue and I lost four pounds, plus I had several
tiny petechiae on one arm and a small bleeder on one leg.
Whatever is going on, if it was lupus, it should have
given the tests something to measure. The only odd thing
at the doctor's office was my temperature, which was up
to 99.5 F/ 37.5 C.
I got the most sun on the day of the visit, mainly while
driving to the doctor. That evening the left side of
my face was sore, but there wasn't a rash or anything.
My teeth were sore on that side, too, but that all
ended by Thursday evening.
> There's a few things you could do.
> Keep posting a summary of the situation and add items that you may not
> have mentioned before.
> (I need a refresher <g> )
Sometimes I need a refresher, too. It's getting
hard to keep track of all this stuff.
Right now I'm wondering if I got the extreme version
of some family weirdness. My parents and both of my
brothers have had adverse reactions to different
medications, although none of them have as long a list
of things to avoid as I do.
> Try sci.med with same summary.
> Or both. I'm sure the others don't mind you being here.
> I think it's a good place to be until we find the *right* support
> newsgroup for you.
> J
Thanks!
--Bill Thompson
| |
|
|
"William R. Thompson" <wrthomps@ix.netcom.com> wrote in message
news:42980E9F.BB2EB54E@ix.netcom.com...
>
> Definitely. I spent the week before the visit getting some
> sun every day, and I was definitely feeling the effects.
> Lots of fatigue and I lost four pounds, plus I had several
> tiny petechiae on one arm and a small bleeder on one leg.
> Whatever is going on, if it was lupus, it should have
> given the tests something to measure. The only odd thing
> at the doctor's office was my temperature, which was up
> to 99.5 F/ 37.5 C.
>
I have had very few positive blood tests, only a weak ANA, and antithyroid
antibodies. Yet I had so many symptoms, the doctor started me on medication
for lupus and after observing me for about a year, he diagnosed me as having
lupus. I have a real problem with dry mouth, eyes, lungs and such, but when
he tested me for Sjogrens (SS-A and SS-B, I think), the blood tests were
negative. The doc gave a thoughtful "hmmm" and sent me for a lip biopsy.
The biopsy was positive, meaning that he could see the immune behavior
happening within the cells, and that is pretty hard to argue against.
So blood tests are just not definitive when it comes to lupus. Hang in
there, and, for better or worse, don't rule out lupus, just because the
blood tests are negative.
Mair
>
| |
| Sherry 2005-05-28, 5:53 pm |
| Some people , if my memory serves me, have lupus and ANA tests are normal.
So guess one really can't rule Lupus out.
Hugs,
Sherry
"William R. Thompson" <wrthomps@ix.netcom.com> wrote in message
news:4296AC8A.A9A1B4D4@ix.netcom.com...
> The doctor's office called earlier today with my
> test results. Whatever is going on, it isn't lupus.
> The tests he ran included ANA, SSB, Smith and
> scleroderma, as well as a blood panel and urine
> tests. So it's back to the guessing games on
> this whatever-it-is.
>
> I'm glas I don't have lupus, but it would have
> been nice to know what's going on.
>
> --Bill Thompson
| |
| Shelagh 2005-05-28, 10:55 pm |
| There is no 'definitive blood test' for lupus or sjogrens;
and in fact you can get an ANA negative lupus dx.
and more often than not sjogrens syndrome is dx'd through biopsy and/or
schirmer's litmus test.
Bill, I wouldn't rule out any autoimmune illness at this point;
maybe go further with another opinion with a qualified rheumy?
Good luck, we have all been in 'limbo' at some point
and it is a relief to get a Dx!
hugs, Shelagh
"William R. Thompson" wrote in message
> The doctor's office called earlier today with my
> test results. Whatever is going on, it isn't lupus.
> The tests he ran included ANA, SSB, Smith and
> scleroderma, as well as a blood panel and urine
> tests. So it's back to the guessing games on
> this whatever-it-is.
> I'm glas I don't have lupus, but it would have
> been nice to know what's going on.
> --Bill Thompson
| |
| William R. Thompson 2005-05-29, 8:54 am |
| Shelagh wrote:
> There is no 'definitive blood test' for lupus or sjogrens;
> and in fact you can get an ANA negative lupus dx.
> and more often than not sjogrens syndrome is dx'd through biopsy and/or
> schirmer's litmus test.
> Bill, I wouldn't rule out any autoimmune illness at this point;
> maybe go further with another opinion with a qualified rheumy?
> Good luck, we have all been in 'limbo' at some point
> and it is a relief to get a Dx!
> hugs, Shelagh
Thanks, Shelagh (and Mair and Sherry). I'm supposed to
see this doctor again in four months; he wants to check on
my cholesterol, which he says is a bit high (which seems
almost as important as worrying about the way that iceberg
scratched up the paint job on the Titanic's hull). Maybe
by that time he'll have convinced himself to run some more
tests. I'm not sure how I can talk him into that without
making him think I'm a hypochondriac. The rheumy I saw
in 1997 told me, on my last visit, to come back the next
time I was sick . . . and when I got a copy of his notes,
he'd written that if I came back, he would recommend Zoloft.
That doesn't fill me with confidence.
The fatigue, chills, digestive upsets and facial soreness
that followed this last visit have ended, and I'm not eager
to go through that again.
--Bill Thompson
| |
|
| Shelagh wrote:
> There is no 'definitive blood test' for lupus or sjogrens;
> and in fact you can get an ANA negative lupus dx.
> and more often than not sjogrens syndrome is dx'd through biopsy and/or
> schirmer's litmus test.
> Bill, I wouldn't rule out any autoimmune illness at this point;
> maybe go further with another opinion with a qualified rheumy?
Hi Shelagh,
What's a qualified rheumy? Are some better at fibro and some better at
Lupus? (just wondering).
A week or so ago, I saw on this or the fibro newsgroup, that "some rheumys'
are good at diagnose and some rheumey's are good at treating". I'm pretty
sure it was the fibro newsgroup and I hate asking questions there, but it
was an American who posted that.
I wonder if, gee, I don't know how to find the name of a UTah rheumy here
because I don't anyone from there has ever posted here and don't recall any
on the map.
Maybe janers knows of that lupus website where she could ask about
rheumey's in Utah?
Hugs
J
| |
|
| I found my "qualified rheumy" (after a couple that were not
communicating with me and simply were not working out) from a
representative of the Arthritis Foundation. This person was a support
group leader for another (non-Lupus) problem I have and knew something
about my needs and what insurance I carried. Was I just lucky or is
this a step to recommend, I cannot say.
cp
J wrote:
> Shelagh wrote:
>
>
>
>
> Hi Shelagh,
> What's a qualified rheumy? Are some better at fibro and some better at
> Lupus? (just wondering).
> A week or so ago, I saw on this or the fibro newsgroup, that "some rheumys'
> are good at diagnose and some rheumey's are good at treating". I'm pretty
> sure it was the fibro newsgroup and I hate asking questions there, but it
> was an American who posted that.
> I wonder if, gee, I don't know how to find the name of a UTah rheumy here
> because I don't anyone from there has ever posted here and don't recall any
> on the map.
> Maybe janers knows of that lupus website where she could ask about
> rheumey's in Utah?
> Hugs
> J
>
| |
|
| "William R. Thompson" wrote:
>
> Thanks, Shelagh (and Mair and Sherry). I'm supposed to
> see this doctor again in four months; he wants to check on
> my cholesterol, which he says is a bit high (which seems
> almost as important as worrying about the way that iceberg
> scratched up the paint job on the Titanic's hull). Maybe
> by that time he'll have convinced himself to run some more
> tests. I'm not sure how I can talk him into that without
> making him think I'm a hypochondriac. The rheumy I saw
> in 1997 told me, on my last visit, to come back the next
> time I was sick . . . and when I got a copy of his notes,
> he'd written that if I came back, he would recommend Zoloft.
> That doesn't fill me with confidence.
Weird..but these days,the doctors I see are sitting there with their
prescriptions and pens at the ready.
It makes us feel like a strange drug experiment, doesn't it?
My brother went to a dermy for a dermatological problem and he never even
looked at it, but prescribed him an anti-psychotic. Sheesh ! My brother
decided not to take it, I'm just as glad he didn't. He's already on one
antidepressant and 2 sleep meds and the doctor never even told him if there
would be a conflict or if he should stop the others. Sheesh !
> The fatigue, chills, digestive upsets and facial soreness
> that followed this last visit have ended, and I'm not eager
> to go through that again.
Anyway, Hi Bill.
I've been reading, but not much time for posting.
I wondered if you want to check your lab results and poke around here and see
what you come up with.
http://www.mtio.com/lupus/lfalt1.htm
and I'll repeat what I posted earlier that my lab results says (in case yours
mentions speckled):
This is what is printed on one of my ANA labwork's...which
showed a low titre of ANA 1:40 and Speckled.
I'm just posting this in case it helps someone else. (check your lab reports)
Sure doesn't help me, because they don't say which type of "speckled" mine
was. <g>
Antinuclear autoantibodies (ANA) produce fluorescence patterns according
to the target nuclear antigen, and are often characteristic of a particular
disease.
Low titre autoantibodies (<1:80) are found in up to 5% of healthy
populations, increasing to 30% of healthy elderly patients.
The coarse speckled pattern is common in SLE, MCTD, and other overlap
syndromes.
Antigens are ribonuclear proteins.
The fine speckled pattern is associated with SLE, Sjogren's syndrome, and
scleroderma.
Antigens are nuclear proteins like SS-A(Ro) and SS-B(La).[end copied text
from lab report]
I've had wild reactions to meds, worse the older I get.
Also had strange reaction to pears as a kid. My face ballooned up so bad,
that I couldn't see. The first time it happened we didn't know what the
problem was. The 2nd time, mom noticed the coincidence that I'd just eaten a
fresh pear. So for years I can only eat canned pears. I've since found out
that pears are not a normal thing to be allergic to and several people
mentioned that they may have been sprayed with something that I was allergic
to.
On the other hand, the same thing happened when a tooth was a problem, so
maybe it wasn't the pear at all. (sheesh, I can't remember the years or
sequence).
So as to your sore face and maybe gastro problems, maybe try another source
of foods? to see if it makes any difference. (ruling out process). I'm not
trying fresh pears again.
oh, and did you get your B12 checked? I think mine is going low. My mouth and
tongue have been sore for weeks.
I'll be reading.
Good luck,
J
| |
|
| CP wrote:
> I found my "qualified rheumy" (after a couple that were not
> communicating with me and simply were not working out) from a
> representative of the Arthritis Foundation. This person was a support
> group leader for another (non-Lupus) problem I have and knew something
> about my needs and what insurance I carried. Was I just lucky or is
> this a step to recommend, I cannot say.
Thanks cp,
speaking of insurance, does health insurance go up with a Lupus diagnosis?
That's something Bill should be aware of, if so.
If there's not much to treat at the moment, other than avoiding sun and his
doctor montioring for trouble (kidneys etc), maybe he'd choose not to be
diagnosed. I don't know.
J
| |
|
| My doctor has admitted that he avoids writing the word "lupus" as a
diagnosis for his patients because of concerns about insurance (at least
until it no longer makes sense to avoid it). For me, this meant that at
the time I applied for Long Term Care insurance I did not have Lupus in
writing in my medical records. For diagnostic codes, he uses whatever
it is he is treating at the moment. This makes sense (to me, anyway)
because in many cases it is hard to pinpoint a diagnosis (lupus or
otherwise) and having an erroneous diagnosis such as lupus in your paper
trail likely isn't helpful and could possibly even be detrimental.
At any rate, I was happy to find this doctor and willingly changed
insurance when he dropped the one I was carrying so I could remain with him.
cp
J wrote:
> CP wrote:
>
>
>
>
> Thanks cp,
> speaking of insurance, does health insurance go up with a Lupus diagnosis?
> That's something Bill should be aware of, if so.
> If there's not much to treat at the moment, other than avoiding sun and his
> doctor montioring for trouble (kidneys etc), maybe he'd choose not to be
> diagnosed. I don't know.
> J
>
| |
| William R. Thompson 2005-05-31, 8:54 am |
| J wrote:
> "William R. Thompson" wrote:
[vbcol=seagreen]
> Weird..but these days,the doctors I see are sitting there with their
> prescriptions and pens at the ready.
> It makes us feel like a strange drug experiment, doesn't it?
Yeah. I know one MD was experimenting on me; he tried different
types of drugs, seemingly at random. Neurontin one time (and
it gave me insomnia, so bad that after three weeks I started
hallucinating from lack of sleep). Xanax and effexor on other
visits (and I wouldn't wish effexor on *anyone*). Seroquel
(he called it an anti-anxiety drug; it's actually an anti-psychotic
for schizophrenia . . . and if you *aren't* schizophrenic, it
will make you hear voices). He put me on prednisone, and it
helped somewhat with some of the symptoms, but he decided
not to pursue that.
> My brother went to a dermy for a dermatological problem and he never even
> looked at it, but prescribed him an anti-psychotic. Sheesh ! My brother
> decided not to take it, I'm just as glad he didn't. He's already on one
> antidepressant and 2 sleep meds and the doctor never even told him if there
> would be a conflict or if he should stop the others. Sheesh !
And they're supposed to think about drug interactions!
One doctor listened to me for about ten minutes before
he misdiagnosed me with "irritable bowel syndrome."
He wanted me to take Immodium AD. When I told him
it makes me throw up, he wrote out a prescription
for the heavy-duty form of it.
> Anyway, Hi Bill.
> I've been reading, but not much time for posting.
> I wondered if you want to check your lab results and poke around here and see
> what you come up with.
I'll try to get them.
> I've had wild reactions to meds, worse the older I get.
I've had a lot of that, too. There's something in
one cold remedy that makes me hallucinate. It was
harmless (I spent an hour lying in bed while I
tripped out) but unwelcome.
> So as to your sore face and maybe gastro problems, maybe try another source
> of foods? to see if it makes any difference. (ruling out process). I'm not
> trying fresh pears again.
I've tried the elimination process, with little luck.
Alcohol is out. Walnuts have made my mouth sore, so
they're out, too. Those are the only dietary things
that cause me trouble these days.
> oh, and did you get your B12 checked? I think mine is going low. My mouth and
> tongue have been sore for weeks.
I don't think the MD checked my B12, but my diet has been
well-balanced and every few days I take a vitamin pill.
> I'll be reading.
> Good luck,
Thanks! Good luck to you, too.
--Bill Thompson
| |
| William R. Thompson 2005-05-31, 8:54 am |
| J wrote:
> CP wrote:
[vbcol=seagreen]
> Thanks cp,
> speaking of insurance, does health insurance go up with a Lupus diagnosis?
> That's something Bill should be aware of, if so.
I don't have insurance at the moment, so in a
way it's a moot point. I did lose an insurer
some years ago, when a doctor let them know I
have a prolapsed mitral valve. It's a harmless
non-problem, but the next month my premium doubled.
A month later the company doubled the premium again,
then sent me a letter saying they were going to
cancel my policy--but they would gladly give me a
new policy (at the higher premium), one that didn't
cover pre-existing conditions.
If I ever start making enough money again, I should
be able to get group coverage through my writers'
organization. I think the insurer is stuck accepting
people with pre-existing conditions.
> If there's not much to treat at the moment, other than avoiding sun and his
> doctor montioring for trouble (kidneys etc), maybe he'd choose not to be
> diagnosed. I don't know.
If the diagnosis came with " . . . and here's something
you can do about the #%*$&! fatigue, this will help and
it won't involve any nasty side effects," I'd take the
package in a second.
--Bill Thompson
| |
|
| "William R. Thompson" wrote:
> If the diagnosis came with " . . . and here's something
> you can do about the #%*$&! fatigue, this will help and
> it won't involve any nasty side effects," I'd take the
> package in a second.
Everyone one here gets frustrated with that.
Maybe you're underestimating MVP?
http://www.swedish.org/14181.cfm
People with mitral valve prolapse often have no symptoms at all.
If symptoms do occur, however, they may include one or more of the following:
* Irregular heart beat
* Fatigue
* Chest pain
* Panic attacks or anxiety
* Rapid heart beat (palpitations)
* Sensation of missed heart beats
* Shortness of breath
* Dizziness
* Intestinal problems (such as irritable bowel syndrome)
As to walnuts, I don't know, because I don't eat them, but I just finished
telling you about B12 and mouth soreness
http://www.nlm.nih.gov/medlineplus/...icle/000574.htm
Vitamins and diet don't fix it, because often it's a malabsorption problem.
Injections are required.
1000 units are fairly cheap and you could give yourself the injections yourself.
Would it hurt (financially) to ask the doctor to check you for it?
Here's cholesterol (while I'm here)
Might guide you to some of the "don'ts"
http://www.nlm.nih.gov/medlineplus/...icle/002472.htm
I'm not saying that you don't have Lupus. I really don't know.
Just trying to find ways to improve things for you, if they apply.
Have you had an overnight sleep study?
It checks for breathing stoppages and other things that can interfere with good
quality sleep.
Just wondering.
I realize if you're uninsured at the moment, you want to do as few useless tests
as possbile.
So tell me about your sleep. Does someone sleep with you? Do they notice
anything? Snoring? Unusually long stoppages of breathing? Coughing, restless
sleep, frequent changes of position?
Do you kick the sheets off the bed? Are the bedclothes tussled when you wake up?
Twitching?
J
| |
| Shelagh 2005-05-31, 5:53 pm |
| "J" wrote in message:
> Hi Shelagh,
> What's a qualified rheumy? Are some better at fibro and some better at
> Lupus? (just wondering).
Hi J
I had a rheumy on the mainland, before we moved here to the island 3 years
ago, who 'specialized' in autoimmunity, the illnesses involved and
especially SLE.
As well, he was known for his 'diagnostic abilities' by all the other docs
and nurses.
eg - he could examine me, listen to me and then diagnose me accurately
without the lab test results coming back and go ahead and treat me
and during the years I was seeing him (over 15!) he was not wrong even once,
proven when the labs all came in...
so I was always ahead of the game being given the treatment earlier than
usual
.... so I do believe in 'qualified rheumys' who are better at treating one
illness type over another.
This particular doctor's father had died at a fairly young age and it was
discovered too late that he had in fact been living with lupus.... so his
interest was obviously personal and he was very dedicated to all his
patients.
I miss him, here on the island there is one rheumy so I have no choice who
to see and I miss having the total confidence in my specialist which was a
plus when I get so sick with a flare (as we all can get with lupus!) to know
that I was in excellent hands!
FWIW,
hugs from Shelagh
| |
| Shelagh 2005-05-31, 5:53 pm |
|
"J" <seth@anon.ianon> wrote in message
> Weird..but these days,the doctors I see are sitting there with their
> prescriptions and pens at the ready.
> It makes us feel like a strange drug experiment, doesn't it?
> My brother went to a dermy for a dermatological problem and he never even
> looked at it, but prescribed him an anti-psychotic. Sheesh !
OMG! Now that is scary !!
To be given an antipsychotic from a dermatologist is just plain weird!
But to not be checked out as well?!
What's going on with that!!
Me? I would report him!!
...... thoughts from Shelagh
| |
| Shelagh 2005-05-31, 5:53 pm |
| "William R. Thompson" <wrthomps@ix.netcom.com> wrote in message
> Yeah. I know one MD was experimenting on me; he tried different
> types of drugs, seemingly at random.
>Xanax and effexor on other
> visits (and I wouldn't wish effexor on *anyone*).
Oh yeah!! my husband agrees with you there!
He had a really bad time with effexor!
>Seroquel
> (he called it an anti-anxiety drug; it's actually an anti-psychotic
> for schizophrenia . . . and if you *aren't* schizophrenic, it
> will make you hear voices).
Sounds like you were seeing a psychiatrist not an MD! go figure!!
>He put me on prednisone, and it
> helped somewhat with some of the symptoms, but he decided
> not to pursue that.
Of course not! that would be too easy, to go with what is working I mean
<g>!!
He would be out of a job if he did that too often lol!
...... hugs,
Shelagh
| |
| Sherry 2005-05-31, 5:53 pm |
| Since I don't sell insurance for a living nor do I work for a insurance
company...do not take this as gospel. But it is my understanding that if
you have group insurance via your place of employment they usually "cover
pre exisiting illnesses" If the company you work for switches insurance
companies then the new company will take all of the employess with all of
the illnesses. When you leave a company and are retiring or go to someplace
without insurance....the insurance from the company you used to work for has
to offer you at a higher "private" rate the same coverage that you had.
I know a gal who has been denied insurance because she anwsered truthfully
that her mother had breast cancer and had died from it. They are self
employed and have no medical insurance because no one will cover her....but
if they worked for a company that had group insurance they would cover her.
Makes no sense. My sister had private insurance yrs ago after her divorce
and they wrote the policy but excluded her diabetes. Then everything that
was the matter with her they denied the claim stating that it was related to
her pre existing condition.
So what is it they say "Only in America". <g>
Sherry
"J" <seth@anon.ianon> wrote in message
news:429B81FA.7B095DE0@execulink.com...
> CP wrote:
>
>
> Thanks cp,
> speaking of insurance, does health insurance go up with a Lupus diagnosis?
> That's something Bill should be aware of, if so.
> If there's not much to treat at the moment, other than avoiding sun and
> his
> doctor montioring for trouble (kidneys etc), maybe he'd choose not to be
> diagnosed. I don't know.
> J
>
| |
|
| Hi Bill,
I do agree with J on the B12 thing. It might be a good idea to have your
levels checked. You could have a malabsorption problem that would prevent
you from utilizing that vitamin. You could eat all the B12 rich foods you
can, but it would not make any difference. The other thing that I wanted to
mention was having your platelet level checked. Petechiae can be caused by a
low count.Weakened blood vessels could be another cause.
BJ-Sk. Canada
"William R. Thompson" <wrthomps@ix.netcom.com> wrote in message
news:429C23FC.B9AFC99F@ix.netcom.com...
> J wrote:
>
>
>
>
> Yeah. I know one MD was experimenting on me; he tried different
> types of drugs, seemingly at random. Neurontin one time (and
> it gave me insomnia, so bad that after three weeks I started
> hallucinating from lack of sleep). Xanax and effexor on other
> visits (and I wouldn't wish effexor on *anyone*). Seroquel
> (he called it an anti-anxiety drug; it's actually an anti-psychotic
> for schizophrenia . . . and if you *aren't* schizophrenic, it
> will make you hear voices). He put me on prednisone, and it
> helped somewhat with some of the symptoms, but he decided
> not to pursue that.
>
even[vbcol=seagreen]
there[vbcol=seagreen]
>
> And they're supposed to think about drug interactions!
>
> One doctor listened to me for about ten minutes before
> he misdiagnosed me with "irritable bowel syndrome."
> He wanted me to take Immodium AD. When I told him
> it makes me throw up, he wrote out a prescription
> for the heavy-duty form of it.
>
and see[vbcol=seagreen]
>
> I'll try to get them.
>
>
> I've had a lot of that, too. There's something in
> one cold remedy that makes me hallucinate. It was
> harmless (I spent an hour lying in bed while I
> tripped out) but unwelcome.
>
source[vbcol=seagreen]
not[vbcol=seagreen]
>
> I've tried the elimination process, with little luck.
> Alcohol is out. Walnuts have made my mouth sore, so
> they're out, too. Those are the only dietary things
> that cause me trouble these days.
>
mouth and[vbcol=seagreen]
>
> I don't think the MD checked my B12, but my diet has been
> well-balanced and every few days I take a vitamin pill.
>
>
> Thanks! Good luck to you, too.
>
> --Bill Thompson
| |
| William R. Thompson 2005-06-01, 9:03 am |
| Shelagh wrote:
> "William R. Thompson" <wrthomps@ix.netcom.com> wrote in message
[vbcol=seagreen]
> Oh yeah!! my husband agrees with you there!
> He had a really bad time with effexor!
After taking it for only three days, I can understand
why it drives some people to suicide.
[vbcol=seagreen]
> Sounds like you were seeing a psychiatrist not an MD! go figure!!
This doctor was both an MD and a therapist. He wore
his therapist hat when I saw him. He was working at a
disadvantage; an earlier MD had tagged me as delusional
("patient diagnosed himself with porphyria over the
internet . . . patient thinks he has a prolapsed mitral
valve . . . patient thinks he gets sick after he's
been in the sun . . . "). Naturally the new doctor
was inclined to believe the other doctor's comments.
I went for the therapy because it seemed like the best
chance to fix my problems. Doctor #1 may have been full
of hot air, or something, but despite that "psychosomatic"
seemed like the only possible diagnosis.
[vbcol=seagreen]
> Of course not! that would be too easy, to go with what is working I mean
> <g>!!
> He would be out of a job if he did that too often lol!
> ..... hugs,
> Shelagh
Thanks!
--Bill Thompson
| |
| William R. Thompson 2005-06-01, 9:03 am |
| BJ wrote:
> Hi Bill,
> I do agree with J on the B12 thing. It might be a good idea to have your
> levels checked. You could have a malabsorption problem that would prevent
> you from utilizing that vitamin. You could eat all the B12 rich foods you
> can, but it would not make any difference.
I'll probably look into it the next time I see him.
I've been fine when I avoid UV light and alcohol,
so I'm still dubious about a vitamin deficiency.
> The other thing that I wanted to
> mention was having your platelet level checked. Petechiae can be caused by a
> low count.Weakened blood vessels could be another cause.
The doctyor checked the platelet level last week,
and evidently didn't find anything wrong. I found
my tests results from 1997/1998, and the platelet
counts were 165 and 167. That's toward the low
end of the range, according to the limits on the
papers, but still okay.
--Bill Thompson
| |
| William R. Thompson 2005-06-01, 9:03 am |
| J wrote:
> "William R. Thompson" wrote:
[vbcol=seagreen]
> Everyone one here gets frustrated with that.
> Maybe you're underestimating MVP?
I think the MVP is just a coincidence here. It's never
done more than give me an occasional annoying flutter.
It's common in my family, and no one else has problems
like I do. The doctor gave me an EKG last week, and
didn't find anything to worry about.
I've had my heart pound very hard a few times when
I've had the flu, but I think that was caused by
dehydration.
> As to walnuts, I don't know, because I don't eat them, but I just finished
> telling you about B12 and mouth soreness
> http://www.nlm.nih.gov/medlineplus/...icle/000574.htm
> Vitamins and diet don't fix it, because often it's a malabsorption problem.
> Injections are required.
> 1000 units are fairly cheap and you could give yourself the injections yourself.
> Would it hurt (financially) to ask the doctor to check you for it?
I'll probably ask at the next visit, but the
vitamin B shortage seems unlikely right now.
> Here's cholesterol (while I'm here)
> Might guide you to some of the "don'ts"
> http://www.nlm.nih.gov/medlineplus/...icle/002472.htm
Thanks. I think I'm already about two-thirds of the way
to a heart-healthy, low-cholesterol diet. No way am I
going to give up chocolate, though.
> So tell me about your sleep. Does someone sleep with you?
Just the cat.
> Do they notice anything? Snoring? Unusually long stoppages of breathing?
> Coughing, restless sleep, frequent changes of position?
> Do you kick the sheets off the bed? Are the bedclothes tussled when you wake up?
> Twitching?
I know I snore, but I don't toss and turn, or do anything
else to move around. Sometimes I'll go to sleep with Hiss
on my chest, and wake up with her still sleeping there
(she's a small, old cat, and very cranky. She'd let
me know if I disturbed her.) (A few months ago I discovered
that she's great for Raynauds. When I get tired and know
I'm going to conk out, I'll pick her up, lie down and set
her on my chest. Then I'll cup my hands over her, which
keeps my hands warm and makes her happy.)
--Bill Thompson
| |
|
| "William R. Thompson" wrote:
> BJ wrote:
>
>
> I'll probably look into it the next time I see him.
> I've been fine when I avoid UV light and alcohol,
> so I'm still dubious about a vitamin deficiency.
I don't know why you're still dubious. Some of lose our ability for our stomachs
or small bowel to absorb the B12.
They call it anemia of B12 deficiency. It's simple bloodwork.
Anemias can cause fatigue.
It's a creeping problem, the most severe symptoms show up the lower it goes, but
best to catch it while it's early.
If you're not, then you know that does not apply.
>
> The doctyor checked the platelet level last week,
> and evidently didn't find anything wrong. I found
> my tests results from 1997/1998, and the platelet
> counts were 165 and 167. That's toward the low
> end of the range, according to the limits on the
> papers, but still okay.
Get copies of each bloodwork, so you can follow along.
(Ours always say, beside the reading, what the normal ranges are, so you can see
how low or normal you are).
http://www.northeastlupus.org.uk/labtests.htm
Low red blood cells, platelets or white cells may all occur in lupus.
BJ's Lupus mostly attacks her blood. She's very busy and may not catch up when
she's able to post.
| |
|
| "William R. Thompson" wrote:
> J wrote:
>
>
> I know I snore, but I don't toss and turn, or do anything
> else to move around. Sometimes I'll go to sleep with Hiss
> on my chest, and wake up with her still sleeping there
> (she's a small, old cat, and very cranky. She'd let
> me know if I disturbed her.) (A few months ago I discovered
> that she's great for Raynauds. When I get tired and know
> I'm going to conk out, I'll pick her up, lie down and set
> her on my chest. Then I'll cup my hands over her, which
> keeps my hands warm and makes her happy.)
Hi Bill, well that rules out restless leg syndrome but does not rule out sleep apnea.
My borhter had it pretty bad and he also had breathing problems during the day.
First he was sent to an ENT, because he'd been bumped in the nose or had a broken nose
during sports as a teen.
The ent did minimal surgery to help his deviation. I hear we all have some deviation
of the septum, they only repair the worse ones.
I had a longer reply going but the power flickered and I lost it all. So I'll post
this, then continue.
J
| |
|
| J wrote:
> "William R. Thompson" wrote:
>
>
> Hi Bill, well that rules out restless leg syndrome but does not rule out sleep apnea.
> My borhter had it pretty bad and he also had breathing problems during the day.
> First he was sent to an ENT, because he'd been bumped in the nose or had a broken nose
> during sports as a teen.
> The ent did minimal surgery to help his deviation. I hear we all have some deviation
> of the septum, they only repair the worse ones.
>
> I had a longer reply going but the power flickered and I lost it all. So I'll post
> this, then continue.
So to continue, he then was referred to a sleep specialist becausre fixing the nose, did
not solve the apnea. Usually it's an overnight sleep study, but since he's out in the
boonies there was no sleep centre there, so they gave him a home tester which checked his
oxygen saturation levels and the number of times and duration of stopping breathing during
sleep. And he was the worst case they'd ever seen in their experience in that area.
Here's one place that tests http://uuhsc.utah.edu/sleepcenter/osa.html
The Sleep~Wake Center is the only sleep center in the Intermountain West with a multi
disciplinary treatment team!
You could be snoring but not realizing that you stop breathing. The end result is poor
sleep and fatigque and the longer term risks are mentioned there. You could snore but not
stop breathing. Only the testing would tell for sure.
While many are overwiehgt, sometimes that has nothing to do with it. REP who was posting
here was not overweight at all and still has sleep apnea.
(oxygen saturation or lack of oxygen, can cause Raynaud's like problems).
I suppose one way to get a sense is to sleep on your side.
Put a pillow in front of you and behind you, to prevent you from rolling back on your back
and if you feel a little better when waking and less fatigue during the day, that might
tell you that apnea is a problem.
Hiss will adjust. Mine lies on the pillow in front of me, or on my shoulder, or in the
crook of my knee or near my butt. She puts her paws against my butt as a sensing device.
If she feels me move, she's out there like a bat out of u no where, because she doesn't
want to get squiched. :-) She's still close enough to warm me.
| |
|
| J wrote:
> So to continue, he then was referred to a sleep specialist becausre fixing the nose, did
> not solve the apnea. Usually it's an overnight sleep study, but since he's out in the
> boonies there was no sleep centre there, so they gave him a home tester which checked his
> oxygen saturation levels and the number of times and duration of stopping breathing during
> sleep. And he was the worst case they'd ever seen in their experience in that area.
> Here's one place that tests http://uuhsc.utah.edu/sleepcenter/osa.html
> The Sleep~Wake Center is the only sleep center in the Intermountain West with a multi
> disciplinary treatment team!
More about this:
It sounds rather simple; the test has to be interpreted and a 3 or 4 page report is printed
showing when and how bad your apnea is. If bad enough, they recommend a CPAP, which blows air
against the back of (I think) your throat, which forces it down your airway and into your
lungs.
So It sounds easy and not too expensive; but my brother didn't have much success with the
first mask and had to switch it for another. He was getting medium/good results, but not good
enough, because his apnea was severe and the CPAP wasn't breathing with him in a way that
helped. So now extra dollars: he switched to a bi-pap which is more expensive. Some do very
well with the initial equipment.
Later, he found the air drying, so he bought a humidifier designed to go with the CPAP or
bipap (more $$$).
He now says that he could never live without it again. It's improved his sleep and daytime
fatigue so very much.
And of course, he's reduced his risks of what is mentioned there.
Others need a heated humidifier (more $$$).
The titrations (force of the air) are often adjusted and as long as there's no change, at some
point, they are no longer needed. If the person loses weight (if they were overweight), the
titrations might be adjusted down. Or if they're finding they're getting sleepy again, the
titrations might be adjusted up. Usually initially that's covered when buying the equipment,
or with us, such is covered by our health system. But I don't know how that works (as to when
the titrations are free in the US or they start billing). Things to ask about. I don't know
if that university recommends or sells the equipment or gives a person a list of what they
require and let them go off and find their own; alt.support.sleep-disorders people can share
their experiences with various equipment.
I don't know how much the test is. You would have to inquire, then make your decision based on
their findings.
In Canada, once a person has been diagnosed with sleep apnea, the Ministry of Transportation,
who can pull our driver's license is notified and they followup to make sure the patient has
acquired the equipment/is compliant.
I forget what REP told us as to whether that applies in the US/Utah. As I recall, the sleep
disorders newsgroup told me that they don't do so in the US.
A lot of people say that they could never adjust to having a mask and such equipment, but many
have and do and feel the better for it.
Of course, it's possible to have the test and they find nothing wrong at all. (except snoring,
which in itself can cause sleep disturbance/poor quality sleep)
J
| |
| William R. Thompson 2005-06-03, 9:01 am |
| J wrote:
> "William R. Thompson" wrote:
[vbcol=seagreen]
[vbcol=seagreen]
[vbcol=seagreen]
> I don't know why you're still dubious.
Mainly it's because my problems only seem to happen
after light exposure, etc. When I avoid the troublemakers,
I feel fine; no fatigue and all that.
On the other hand, my father got some test results
this evening, and guess what sort of a vitamin
deficiency he has? The doctor wants to check for
malabsorption problems. Dad's problems aren't anything
like mine (he's dealing with Alzheimer's), but it's enough
to convince me to ask the doctor at the next visit.
I'll have to get my test results from last week's visit. I
don't think he checked for B-12, but I couldn't keep
track of all the tests he wanted.
--Bill Thompson
| |
|
| "William R. Thompson" wrote:
> J wrote:
>
>
>
>
>
>
> Mainly it's because my problems only seem to happen
> after light exposure, etc. When I avoid the troublemakers,
> I feel fine; no fatigue and all that.
I'll have to get back to you about the alcohol and the walnuts.
> On the other hand, my father got some test results
> this evening, and guess what sort of a vitamin
> deficiency he has? The doctor wants to check for
> malabsorption problems. Dad's problems aren't anything
> like mine (he's dealing with Alzheimer's), but it's enough
> to convince me to ask the doctor at the next visit.
>
> I'll have to get my test results from last week's visit. I
> don't think he checked for B-12, but I couldn't keep
> track of all the tests he wanted.
Ok.
If your father wasn't checked earlier and has had it for some time, it can cause
memory problems or exacerbate alzheimer's
http://www.postgradmed.com/issues/2...dharmarajan.htm
On the other hand, someone on another newsgroup told me it's got to real low before
that happens, so I guess it depends how low your Dad is. Hope he'll get the
injections, even while they're investigating.
Another thought is that their investigations or his history, might be a clue for
you (or vice versa?)
J
| |
|
| Hi Bill,
I get lost when the threads get too long, so I am surprised that I saw this
one. I would like to comment on a couple of things that J mentioned in here
and in a some statements you both made below. Most people with lupus have a
reaction to the sun. Also, as J said lupus has attacked my blood cells and I
have antibodies against white cells, red cells and platelets. If you put
those two things together, it might explain why your symptom appear only
after you have been exposed to the sun. You see, almost all of my emergency
treatments were necessary during summer months. I am a bit suspicious of
platelet count of 165,167. I know it is in normal range (150-400), but I
would expect it to be higher than that. Most people seem to be at 250 or
better. I get petechiae and bruise easily at 120, which would be a good
count for me. The other thing is the B12 level. I read what you said about
your father having low levels, so I think it is even more important for you
to keep tabs on your own. I have true pernicious anemia and the
megaloblastic red cells that accompany that. Before diagnosis and treatment,
I got so bad neurologically. I lost sensation in my hands and feet, was
mentally confused, and even had difficulty walking. The neuro problem
gradually went away after receiving IM injections. If I had not been treated
at that point, it could have progressed. The damage caused to the spinal
nerves are irreversable. I was lucky, because the hematologist caught my
illness, before it got to that stage. Best keep on top of things by getting
copies of all of your blood work. You can watch for trends that way.
BJ-Sk. Canada
"J" <seth@anon.ianon> wrote in message
news:429F6C85.6864AF15@execulink.com...
> "William R. Thompson" wrote:
>
your[vbcol=seagreen]
prevent[vbcol=seagreen]
you[vbcol=seagreen]
>
> I don't know why you're still dubious. Some of lose our ability for our
stomachs
> or small bowel to absorb the B12.
> They call it anemia of B12 deficiency. It's simple bloodwork.
> Anemias can cause fatigue.
> It's a creeping problem, the most severe symptoms show up the lower it
goes, but
> best to catch it while it's early.
> If you're not, then you know that does not apply.
>
caused by a[vbcol=seagreen]
>
> Get copies of each bloodwork, so you can follow along.
> (Ours always say, beside the reading, what the normal ranges are, so you
can see
> how low or normal you are).
> http://www.northeastlupus.org.uk/labtests.htm
> Low red blood cells, platelets or white cells may all occur in lupus.
>
> BJ's Lupus mostly attacks her blood. She's very busy and may not catch up
when
> she's able to post.
>
| |
| William R Thompson 2005-06-04, 8:54 am |
| "J" <seth@anon.ianon> wrote :
> "William R. Thompson" wrote:
[vbcol=seagreen]
> I'll have to get back to you about the alcohol and the walnuts.
Mom tells me that walnuts make her mouth sore, too,
so that may be a family thing. She had a positive ANA
test some years ago, but the results have gone missing.
[vbcol=seagreen]
> If your father wasn't checked earlier and has had it for some time, it can
> cause
> memory problems or exacerbate alzheimer's
> http://www.postgradmed.com/issues/2...dharmarajan.htm
> On the other hand, someone on another newsgroup told me it's got to real
> low before
> that happens, so I guess it depends how low your Dad is. Hope he'll get
> the
> injections, even while they're investigating.
He'll get the injections. Thanks for the link; I'll check it out
> Another thought is that their investigations or his history, might be a
> clue for
> you (or vice versa?)
It might be. It might get our doctor to thinking, too.
--Bill Thompson
| |
|
| William R Thompson wrote:
> "J" <seth@anon.ianon> wrote :
>
>
>
>
> Mom tells me that walnuts make her mouth sore, too,
> so that may be a family thing. She had a positive ANA
> test some years ago, but the results have gone missing.
>
> [Snip B12 and Dad]
>
> It might be. It might get our doctor to thinking, too.
Hi Bill,
Well, apparently the ANA can be positive or increase as we age.
"Some older adults (5% to 40%) may have mildly elevated levels. ..."
We are products of both our parents genetically.
You may be closer to your mother genetically.
I ran a search of this newsgroup's archives on (the word) walnut.
They've been discussed but as far as I could see, never in conjunction with
mouth sores.
Mostly discussing likes or not.
I also ran a Google search with "walnut" and SLE or Lupus, and nothing
interesting came up.
The other thing I found is just one website that said "if a person has an
allergy to walnut, they problably have an allergy to other nuts, including
peanuts", but the allergy symptoms described anaphylaxis type symptoms.
This website says that alcohol can cause flareups
<http://www.arthritis.ca/types%20of%...default.asp?s=1>
"can also trigger inflammation and increase symptoms"
It's a Canadian webiste. Maybe we're less politically correct and tell it like
it is? <smile>
How's your mother? Is she on medications that can cause a Lupus like sydrome
(heart or BP meds?)
Does she have to avoid the same things as you?
Any suspicion that she may have Lupus or something related?
J
| |
| William R Thompson 2005-06-05, 8:53 am |
| "J" <tropical@invalid.anon> wrote:
> Hi Bill,
> Well, apparently the ANA can be positive or increase as we age.
> "Some older adults (5% to 40%) may have mildly elevated levels. ..."
> We are products of both our parents genetically.
> You may be closer to your mother genetically.
>
> I ran a search of this newsgroup's archives on (the word) walnut.
> They've been discussed but as far as I could see, never in conjunction
> with
> mouth sores.
The walnuts don't cause my usual sores; they make the roof of
my mouth very irritated. Sorry I didn't make that clearer.
I've got no idea what causes that. It's happened with
both packaged and freshly-shelled walnuts, so I don't
think it's some problem with additives or preservatives.
> This website says that alcohol can cause flareups
> <http://www.arthritis.ca/types%20of%...default.asp?s=1>
> "can also trigger inflammation and increase symptoms"
> It's a Canadian website. Maybe we're less politically correct and tell it
> like
> it is? <smile>
Or you aren't afraid to tick off your distillers. I do know
that, the last few times I had a drink, the effects were
definitely not like a hangover. I'm fairly certain that
a nosebleed isn't a typical hangover symptom (unless
you get fall-down drunk and land on your face, which
didn't happen. Honest.)
> How's your mother? Is she on medications that can cause a Lupus like
> sydrome
> (heart or BP meds?)
She's taking Fosamax for osteoporosis. Once in a great while her
tic doloreux acts up and she goes to the dentist for an injection.
She hasn't shown any lupus-like symptoms, so far as I know,
and she doesn't have any trouble with sunlight/fluorescent lighting.
One doctor had her on Neurontin for the tic (which causes extreme
facial pain), but that was some years ago. Neurontin made her sleepy
much of the time, but when a doctor had me try it, it gave me a
heavy-duty case of insomnia. Go figure.
--Bill Thompson
| |
|
| William R Thompson wrote:
> "J" <tropical@invalid.anon> wrote:
>
>
> The walnuts don't cause my usual sores; they make the roof of
> my mouth very irritated. Sorry I didn't make that clearer.
> I've got no idea what causes that. It's happened with
> both packaged and freshly-shelled walnuts, so I don't
> think it's some problem with additives or preservatives.
Hi Bill,
apparently there's tannins in walnuts.
Tannins are acidic and drying out.
Tannins are in grapes and wine.
I don't where to go with this info. That might explain the roof of your mouth
soreness.
I don't drink alcohol (for years now), so I don't know if it causes drying out,
which might explain your nosebleeds.
I think I would want to see an ENT (ear, nose and throat doctor) and have them
have a look, both because of the snoring and because of this oddity. What came
to mind is vascular oddities, or even mouth or nasal cancers.
I think should be ruled out. (scans might be required)
The reverse is probably true too; dry nasal passages from not enough humidity
in the air; tannins or other drying out problems, can cause snoring.
Do you feel dried out? There's Srogen's (sp?) dry eyes, dry mouth and I forget
the rest.
>
> Or you aren't afraid to tick off your distillers.
I'm not, but I don't drink.
Others walk on egghells about that.
You've heard the one where:
The definition of an alcoholic is someone who drinks more than their doctor.
(?)
In other words, doctors rarely ask and/or if the person says "I'm a social
drinker", well, that can be a wide range of drinking and doctors rarely ask for
each person's definition of "social drinker".
> I do know
> that, the last few times I had a drink, the effects were
> definitely not like a hangover. I'm fairly certain that
> a nosebleed isn't a typical hangover symptom (unless
> you get fall-down drunk and land on your face, which
> didn't happen. Honest.)
Then what I see here is of concern
<http://www.cfpc.ca/English/cfpc/pro...default.asp?s=1>
Most nosebleeds occur in the front part of the nose and stop in a few minutes.A
few nosebleeds stem from large vessels in the back of the nose. These
nosebleeds can be dangerous. They may occur after an injury. This type of
nosebleed is more common in the elderly and is often due to high blood
pressure, kidney disease, daily aspirin use or bleeding disorders. Usually, the
older the patient, the more serious the nosebleed.
You'll need to get medical attention if a nosebleed goes on for more than 15
minutes or if it occurs after an injury, such as a punch in the face,
especially if you think you may have a broken nose. A nosebleed after a fall or
a car wreck could be a sign of internal bleeding. Frequent nosebleeds may mean
you have a more serious problem. For example, nosebleeds and bruising can be
early signs of leukemia. Nosebleeds can also be a sign of blood clotting
disorders and nasal tumors (cancerous and non-cancerous).
,end copied text.
So if your doctor can rule out high BP, kidney disease (and I would think that
most kidney diseases show some indication through bloodwork) and you can rule
out aspirin (or aspirin containing medications and foods, such as cabbage),
we're back to blood disorders; anemias, Vit B12, clotting disorders and
leukemias.
Ok, so you realize we're just exploring possibles and what the best
(economincal) way to get answers is.
I hope you're keeping notes and adding some and deleting others <smile>
Maybe you should see an ENT and if nothing is found there, see a hematologist?
Here's an example of one leukemia
<http://cancer.nccs.drtango.com/411....d=&otherParams=>
Acute lymphoblastic leukemia is usually diagnosed because patients have signs
and symptoms of leukemia including fatigue, weight loss, bleeding, easy
bruising or unexplained infections. Occasionally, the diagnosis is made on
routine physical examination by performing a white blood count, platelet count
and red blood cell determination.
I'm sleepy and now I forget if your doctor ran the above bloodwork and what was
low or wasn't, so let's continue this and/or think about it a bit.
J
| |
|
| William R Thompson wrote:
>
> She's taking Fosamax for osteoporosis. Once in a great while her
> tic doloreux acts up and she goes to the dentist for an injection.
> She hasn't shown any lupus-like symptoms, so far as I know,
> and she doesn't have any trouble with sunlight/fluorescent lighting.
> One doctor had her on Neurontin for the tic (which causes extreme
> facial pain), but that was some years ago. Neurontin made her sleepy
> much of the time, but when a doctor had me try it, it gave me a
> heavy-duty case of insomnia. Go figure.
Mom had tic douloureux. Some here call it Trigeminal Neuralgia and some here
have had it.
I don't think it's specific to Lupus.
I don't know what to make of the Neurontin. Perhaps it depends if you only
tried it once or a few times?
I think most say that it makes them sleepy.
So I think we're ruling your Mom out in the search for clues as to what you
have.
J
http://www.ninds.nih.gov/disorders/...l_neuralgia.htm
What is Trigeminal Neuralgia?
Trigeminal neuralgia, also called tic douloureux, is a condition that affects
the trigeminal nerve (the 5th cranial nerve), one of the largest nerves in the
head. The trigeminal nerve is responsible for sending impulses of touch, pain,
pressure, and temperature to the brain from the face, jaw, gums, forehead, and
around the eyes. Trigeminal neuralgia is characterized by a sudden, severe,
electric shock-like or stabbing pain typically felt on one side of the jaw or
cheek. The disorder is more common in women than in men and rarely affects
anyone younger than 50. The attacks of pain, which generally last several
seconds and may be repeated one after the other, may be triggered by talking,
brushing teeth, touching the face, chewing, or swallowing. The attacks may come
and go throughout the day and last for days, weeks, or months at a time, and
then disappear for months or years.
| |
| Shelagh 2005-06-05, 11:51 am |
|
"William R Thompson" <wrthomps@ix.netcom.com> wrote in message
> The walnuts don't cause my usual sores; they make the roof of
> my mouth very irritated. Sorry I didn't make that clearer.
> I've got no idea what causes that. It's happened with
> both packaged and freshly-shelled walnuts, so I don't
> think it's some problem with additives or preservatives.
> --Bill Thompson
>
Oddly, that happens to my mouth as well, just from walnuts, not the other
'nuts'.
I wonder what it is in the nuts to cause such irritation?... kiwi skins
also give my mouth an 'allergic reaction' of sorts by making it 'itchy', my
lips as well; my husband gets a similar reaction from rhubarb.
I will have to look these things up to see if there is a related chemical in
the product....
FWIW,
Shelagh
| |
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| J wrote:
>
> Then what I see here is of concern
> <http://www.cfpc.ca/English/cfpc/pro...default.asp?s=1>
>
> Most nosebleeds occur in the front part of the nose and stop in a few minutes.A
> few nosebleeds stem from large vessels in the back of the nose. These
> nosebleeds can be dangerous. They may occur after an injury. This type of
> nosebleed is more common in the elderly and is often due to high blood
> pressure, kidney disease, daily aspirin use or bleeding disorders. Usually, the
> older the patient, the more serious the nosebleed.
>
> You'll need to get medical attention if a nosebleed goes on for more than 15
> minutes or if it occurs after an injury, such as a punch in the face,
> especially if you think you may have a broken nose. A nosebleed after a fall or
> a car wreck could be a sign of internal bleeding. Frequent nosebleeds may mean
> you have a more serious problem. For example, nosebleeds and bruising can be
> early signs of leukemia. Nosebleeds can also be a sign of blood clotting
> disorders and nasal tumors (cancerous and non-cancerous).
> ,end copied text.
>
> So if your doctor can rule out high BP, kidney disease (and I would think that
> most kidney diseases show some indication through bloodwork) and you can rule
> out aspirin (or aspirin containing medications and foods, such as cabbage),
> we're back to blood disorders; anemias, Vit B12, clotting disorders and
> leukemias.
>
> Ok, so you realize we're just exploring possibles and what the best
> (economincal) way to get answers is.
> I hope you're keeping notes and adding some and deleting others <smile>
> Maybe you should see an ENT and if nothing is found there, see a hematologist?
>
> Here's an example of one leukemia
> <http://cancer.nccs.drtango.com/411....d=&otherParams=>
>
> Acute lymphoblastic leukemia is usually diagnosed because patients have signs
> and symptoms of leukemia including fatigue, weight loss, bleeding, easy
> bruising or unexplained infections. Occasionally, the diagnosis is made on
> routine physical examination by performing a white blood count, platelet count
> and red blood cell determination.
>
> I'm sleepy and now I forget if your doctor ran the above bloodwork and what was
> low or wasn't, so let's continue this and/or think about it a bit.
I was just looking at John's first post (in 2001) and he:
1) was taking warfarin, which could explain his frequent nosebleeds
2) mentioned a biopsy for Membranous Glomerulonephritis. (not solely bloodwork)
http://www.nlm.nih.gov/medlineplus/...icle/000472.htm
3) diagnosed w/SLE in July of this year, after a 4 yr.on and off game of hide and seek, with " The Patient One"
4) enlarged lymph nodes in the neck and abdomen - abdominal pain - swollen legs but he was on Presnisone
5) he was screened for TB, Aids and cancer (lymphoma - bone biopsy) and a number of other investigations and treatments in case it
was TB
http://groups-beta.google.com/group...80ff615b767dad3
He's Canadian so all the investigations were covered by our Health Plan
So Bill, I don't want to steer you wrong into unnecessary testing.
On the other hand, I don't want you to think wait and see is okay either.
I just don't know if it is or isn't Lupus.
What I would do is take the blookwork and compare what they tested to what is mentioned in KC's FAQ to see if something was missed
and then compare the values to that website that I provided.
I think I've exhausted all my ideas, but I'm by no means an expert on all or any of the diseases of the world.
So don't rely solely on anything I say, ok?
Keep in touch,
J
| |
|
| Shelagh wrote:
> "William R Thompson" <wrthomps@ix.netcom.com> wrote in message
> Oddly, that happens to my mouth as well, just from walnuts, not the other
> 'nuts'.
> I wonder what it is in the nuts to cause such irritation?... kiwi skins
> also give my mouth an 'allergic reaction' of sorts by making it 'itchy', my
> lips as well; my husband gets a similar reaction from rhubarb.
> I will have to look these things up to see if there is a related chemical in
> the product....
Thanks Shelagh,
Nobody was chiming in, so it was hard to say.
Now that you've posted, I guess the general population (your husband) has this
problem too with walnuts.
So, it's non specific .
I haven't eaten kiwi in ages, so I can't remember if I ate the skins (or not).
Thanks and hugs
J
| |
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|
| William R Thompson 2005-06-06, 8:57 am |
| "J" <tropical@invalid.anon> wrote:
> William R Thompson wrote:
[vbcol=seagreen]
> Hi Bill,
> apparently there's tannins in walnuts.
> Tannins are acidic and drying out.
> Tannins are in grapes and wine.
> I don't where to go with this info. That might explain the roof of your
> mouth
> soreness.
> I don't drink alcohol (for years now), so I don't know if it causes drying
> out,
> which might explain your nosebleeds.
I rarely drink, and even when I went to parties in college I never had more
than two drinks at a time. I don't remember if I had morning-after
nosebleeds
back then. They've happened often in the shower; my thought is that when
I get out of bed and have a hot shower, my blood pressure goes up. I'm
probably
getting sores inside my nose as well as in my mouth. The nosebleeds have
been
much less of a problem since I started staying out of the sun. When they've
happened
since then, it's been after I've had too much UV light. That's what made
this
post-drink bleeding such a surprise.
> I think I would want to see an ENT (ear, nose and throat doctor) and have
> them
> have a look, both because of the snoring and because of this oddity. What
> came
> to mind is vascular oddities, or even mouth or nasal cancers.
> I think should be ruled out. (scans might be required)
I did have a doctor look in my nose at one point, and he didn't find
anything
wrong.
> The reverse is probably true too; dry nasal passages from not enough
> humidity
> in the air; tannins or other drying out problems, can cause snoring.
> Do you feel dried out? There's Srogen's (sp?) dry eyes, dry mouth and I
> forget
> the rest.
I checked on Jogren's, and the symptoms don't match my problems. My
eyes and mouth don't dry out.
--Bill Thompson
| |
| William R Thompson 2005-06-06, 8:57 am |
| "J" <tropical@invalid.anon> wrote:
> So Bill, I don't want to steer you wrong into unnecessary testing.
> On the other hand, I don't want you to think wait and see is okay either.
> I just don't know if it is or isn't Lupus.
> What I would do is take the bloodwork and compare what they
> tested to what is mentioned in KC's FAQ to see if something was missed
> and then compare the values to that website that I provided.
> I think I've exhausted all my ideas, but I'm by no means an expert on all
> or any of the diseases of the world.
> So don't rely solely on anything I say, ok?
Okay, but I do appreciate the time and energy you and everyone else have put
into this.
--Bill Thompson
| |
| William R Thompson 2005-06-06, 8:57 am |
| "J" <tropical@invalid.anon> wrote:
> William R Thompson wrote:
[vbcol=seagreen]
> Mom had tic douloureux. Some here call it Trigeminal Neuralgia and some
> here
> have had it.
> I don't think it's specific to Lupus.
>
> I don't know what to make of the Neurontin. Perhaps it depends if you only
> tried it once or a few times?
I was on it for three weeks, and the insomnia started right away. I would
get
about two hours of sleep every night. The rest of the time I felt wide
awake,
even when I had trouble concentrating.
> I think most say that it makes them sleepy.
The doctor who prescribed it told me the same thing. After that I was
careful
not to ask him about side-effects or other details. I was seeing him as a
therapist, the theory being that my problems were psychosomatic, and I
didn't want to give my subconscious any idea of what to expect in the way
of side-effects.
> So I think we're ruling your Mom out in the search for clues as to what
> you
> have.
I think so, too. She's never complained of any lupus-like symptoms.
--Bill Thompson
| |
|
| William R Thompson wrote:
> I rarely drink, and even when I went to parties in college I never had more
> than two drinks at a time. I don't remember if I had morning-after
> nosebleeds
> back then. They've happened often in the shower; my thought is that when
> I get out of bed and have a hot shower, my blood pressure goes up. I'm
> probably
> getting sores inside my nose as well as in my mouth. The nosebleeds have
> been
> much less of a problem since I started staying out of the sun. When they've
> happened
> since then, it's been after I've had too much UV light. That's what made
> this
> post-drink bleeding such a surprise.
Well, it sure sounds like Lupus to me.
And now that I think about it, John had probably been chasing after his cat or
dog, just prior to the nosebleeds, but I can't remember if it was dark or
daylight when we were chatting and these events occurred. I sure wish he was
here.
Have you tried lowering the temperature a tad on your water heater?
(we were talking earlier that too hot isn't good for the blood vessels) and your
logic there might be right.
J
| |
| William R Thompson 2005-06-09, 8:54 am |
| "J" <tropical@invalid.anon> wrote:
> William R Thompson wrote:
[vbcol=seagreen]
> Have you tried lowering the temperature a tad on your water heater?
No. The water temperature was never scalding or uncomfortably hot.
This seems like a UV-light issue, because I can take hot showers
without a problem if I haven't done any light recently. My blood pressure
isn't high, but I'm guessing that a nasal sore acts like a thin spot on
an inner tube. Put a little pressure on it and it blows.
> (we were talking earlier that too hot isn't good for the blood vessels)
> and your
> logic there might be right.
I hope so. I'd hate to think I've become allergic to water.
--Bill Thompson
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