Multiple sclerosis support - The battle against doctors and getting a diagnosis

Author

The battle against doctors and getting a diagnosis

Jordan Powell

2005-03-19, 5:15 pm

Whether I have a neck injury, a virus, MS or whatever, I am finding it
frustrating that I can't get a lot of support from neurologists or my family
doctor. I suppose I'm been horribly unrealistic to expect to get a quick
consultation from a professional at the drop of a hat, but at the same time
I find I'm getting desperate for answers and no one seems to be acting fast
enough.

When I call any of my doctors (I have a family doctor and a neurologist),
I'm made to feel like I'm burdening them with the call. The usual line I
get from their receptionist or nurse is, "if you feel really bad, go to the
emergency room." Unfortunately, the emergency room (aside from being
expensive), is designed to stabilize those involved in a life-threatening
emergency, not someone who is enduring some sort of chronic injury or
illness. So that leaves me alone at home, wanting to call my girlfriend
every 10 minutes, or my brother or my mother. But I've been emailing and
calling them so often now that the conversation usually degrades into
something like this:

Me: "It seems to be getting worse....I don't know what's happening to
me....I'm so scared!"

Them: "That's horrible! I wish there was something I could do or say to
make you feel better."

Of course, there isn't. I know I shouldn't be putting this kind of extra
strain on my relationships...they don't want to hear me hyperventilating
over the phone any more than I want to do it...

But every website that describes the kinds of Peripheral Neuropathy and
other symptoms I have emphasize how important it is to seek medical
attention immediately to avoid permanent nerve damage, etc. etc. Yet when I
make an appointment with a neurologist, it seems I can only manage an
appointment that is weeks away.

I suppose --like all of you who first came to this area-- I'm looking for
people who know what I'm going through right now and can relate to it.
Please tell me you're out there.

Any suggestions on what I can do to calm myself, or work better with my
doctors without coming off like a panicked hypochondriac, would be greatly
appreciated. I'm scared and I don't know what to do with myself but sit
here in my house and worry.

Michael

2005-03-19, 5:15 pm

Get your Neuro's and GP's email addresses and tell *them* that it's getting
worse.

By the way... waiting from two to 10 weeks for a neurology consult is
perfectly normal in the USA.

Here in Canada, the wait is generally more like 3 to 20 weeks.

((U))
M

Jordan Powell wrote:

> Whether I have a neck injury, a virus, MS or whatever, I am finding it
> frustrating that I can't get a lot of support from neurologists or my
> family doctor. I suppose I'm been horribly unrealistic to expect to
> get a quick consultation from a professional at the drop of a hat,
> but at the same time I find I'm getting desperate for answers and no
> one seems to be acting fast enough.
>
> When I call any of my doctors (I have a family doctor and a
> neurologist), I'm made to feel like I'm burdening them with the call.
> The usual line I get from their receptionist or nurse is, "if you
> feel really bad, go to the emergency room." Unfortunately, the
> emergency room (aside from being expensive), is designed to stabilize
> those involved in a life-threatening emergency, not someone who is
> enduring some sort of chronic injury or illness. So that leaves me
> alone at home, wanting to call my girlfriend every 10 minutes, or my
> brother or my mother. But I've been emailing and calling them so
> often now that the conversation usually degrades into something like
> this:
> Me: "It seems to be getting worse....I don't know what's happening to
> me....I'm so scared!"
>
> Them: "That's horrible! I wish there was something I could do or
> say to make you feel better."
>
> Of course, there isn't. I know I shouldn't be putting this kind of
> extra strain on my relationships...they don't want to hear me
> hyperventilating over the phone any more than I want to do it...
>
> But every website that describes the kinds of Peripheral Neuropathy
> and other symptoms I have emphasize how important it is to seek
> medical attention immediately to avoid permanent nerve damage, etc.
> etc. Yet when I make an appointment with a neurologist, it seems I
> can only manage an appointment that is weeks away.
>
> I suppose --like all of you who first came to this area-- I'm looking
> for people who know what I'm going through right now and can relate
> to it. Please tell me you're out there.
>
> Any suggestions on what I can do to calm myself, or work better with
> my doctors without coming off like a panicked hypochondriac, would be
> greatly appreciated. I'm scared and I don't know what to do with
> myself but sit here in my house and worry.

jim s

2005-03-19, 5:16 pm

Jordan Powell wrote:
> Whether I have a neck injury, a virus, MS or whatever, I am finding it
> frustrating that I can't get a lot of support from neurologists or my family
> doctor.

Try writing a letter to the department head ,the neuro and primary
doctor expressing your concerns , not only as a patient, but as a paying
customer. Even if you are an HMO member or have some other insurance,
you are still the consumer and are thus entitled to some basic care.

If you suspect you may have ms or a spinal injury ( or both, like me )
then you should be evaluated with a thorough neurological exam, not to
exclude, ct scan, mri, lumbar tap etc. to determine the nature of your
problem. Then you should be offered some options as far as treatment and
palliative care.
If you indicate that you will escalate your concerns as far as it takes
to get some help, then you will usually get some satisfaction.

Don't ask me how know this, but it seems to be that some doctors, hmos
etc. expect us to freak out before they do anything for us.
But don't really freak out, just do the next indicated thing and you'll
get through it.
It might take you a few months, but you will get through it.
And remember, the only thing that lasts forever is temporary anyway.
Jim S

Jim S

2005-03-19, 5:16 pm

"jim s" <elkabong@colevalley.net> wrote in message
news:KZrZd.21808$OU1.21348@newssvr21.news.prodigy.com...

Oh, now I have read your first posting, where you describe your tests etc.
It's probably unlikely that you have ms. Lucky you, but unfortunately that
leaves you with a messed up neck, and maybe you still have ms.

in my case, a few months after a hyperextension injury of myc-spine, I
started really getting weird stuff happening....after the usual 30 month
"bullshit and advil" regimen ... an mri of my brain didn't show anything,
but when they mri'd my neck and t-spine they found a number of suspicious
patches...which led to my favorite thing, a spinal tap, given by an
incompetent moron.
And to top it off, it confirmed the dx of ms. hrumph.
Maybe if I had stayed home instead of showing up for those last two tests, I
would never have gotten ms, and would've just gone through life without any
sensation on the left side of my body, and never missed it...
well maybe not.
So maybe you need to just give it some time, and either you'll get better or
you'll get a definitive diagnosis.
In any case , I wish you the best of all outcomes, that you will be just
fine.
good luck!
Jim S

Chuck

2005-03-19, 5:16 pm

Jordan Powell wrote:
> Whether I have a neck injury, a virus, MS or whatever, I am finding
it
> frustrating that I can't get a lot of support from neurologists or my
family
> doctor.

Your situation almost brought me to tears as I recalled myself a couple
of years ago. I have no easy answers for you other than to keep
searching and be strong.
http://www.mercurypoisoned.com/chuck_balzer.html

All the best
Chuck

Gromit

2005-03-19, 5:16 pm

jim s wrote:
<snip>
Try writing a letter to the department head ,the neuro and primary
doctor expressing your concerns , not only as a patient, but as a
paying
customer. <snip> If you indicate that you will escalate your concerns
as far as it takes to get some help, then you will usually get some
satisfaction. Don't ask me how know this, but it seems to be that
some doctors, hmos etc. expect us to freak out before they do anything
for us. But don't really freak out, just do the next indicated thing
and you'll get through it. <snip>

I heartily agree with these points. The medical industry has changed,
and sometimes you have to be demanding in order to get better
treatment. I had similar issues, and demanded to speak to the doctor
directly (the doctor was fine, it was the office staff with their 'go
to ER' crap that was the problem). I find following the same plan as
above really helps resolve treatment issues.

I also have a therapist, for purely ranting purposes

Xoxo,
Heather in Oregon

abdi

2005-03-19, 5:16 pm

Indeed some neurologists are not all that good. I have found the local
teaching hospital to be very good, but some times diagnosis of MS is not
easy and its based on eliminating all the possible causes and observing the
deterioration.

--
Quaecomque sunt vera ----
"Gromit" <gromit@glabrous.net> wrote in message
news:1110927873.636772.295840@l41g2000cwc.googlegroups.com...
>
> jim s wrote:
> <snip>
> Try writing a letter to the department head ,the neuro and primary
> doctor expressing your concerns , not only as a patient, but as a
> paying
> customer. <snip> If you indicate that you will escalate your concerns
> as far as it takes to get some help, then you will usually get some
> satisfaction. Don't ask me how know this, but it seems to be that
> some doctors, hmos etc. expect us to freak out before they do anything
> for us. But don't really freak out, just do the next indicated thing
> and you'll get through it. <snip>
>
> I heartily agree with these points. The medical industry has changed,
> and sometimes you have to be demanding in order to get better
> treatment. I had similar issues, and demanded to speak to the doctor
> directly (the doctor was fine, it was the office staff with their 'go
> to ER' crap that was the problem). I find following the same plan as
> above really helps resolve treatment issues.
>
> I also have a therapist, for purely ranting purposes

>
> Xoxo,
> Heather in Oregon
>

Rob Duncan

2005-03-19, 5:16 pm

"Jordan Powell" <lonewolf@one.three.net> wrote in message
news:113cc988guitjaf@corp.supernews.com...
> Whether I have a neck injury, a virus, MS or whatever, I am finding it
> frustrating that I can't get a lot of support from neurologists or my
> family doctor.

What do you expect to be done? They obviously feel nothings wrong with you,
have they brought up visiting a psychiatrist yet?

You have no inflamation or scarring on MRI, no oligoclonal bands, no clonus,
etc., so what exactly would you like them to do? Steroids are unneeded,
actually contraindicated in your case, and any of our treatments are
unsuitable for you, so, what do you want to be done? If its a second
opinion... go get one. Stop waiting around on other people to do stuff for
you. Pick up the phone book, find a goog neurologist, and schedule an apt.
(and always keep your own copies of MRI's) You can get extra copies by
lying when you have an MRI and say "I need an extra set to give to docter
"X".

Take charge of your situation. Dont become victim to it. Not to mention
that MS isnt even diagnosed until after the second exacerbation. By
definition. It could be anything thats wrong with you. Hell, all your
syptoms except your floaters (which everyone has) and the pain you feel when
you bend your neck forward, can be caused by hyperventilation. The neck
thing is probably caused by your slipped discs. Just an opinion. But dont
wait on others, take charge. Be a huge GIANT XXX until the situation is
resolved to your satisfaction. Hell, you could have an endocrine problem
thats causing you to subtely hyperventilate. Who knows? But dont wait for
permission from others to go see more neuro's. If its psychiatric, bite the
bullet and deal with it like a man.

Rob

Jordan Powell

2005-03-23, 5:34 pm

"Rob Duncan" <robduncan@gbronline.com> wrote in message
news:nuKdnbXrJp3j5affRVn-> What do you expect to be done? They obviously
feel nothings wrong with you,
> have they brought up visiting a psychiatrist yet?

No -I can assure you, I've NEVER had any physical problems or history of
hyperventilating or anything like this prior to January of this year. This
came on sudden and is progressing just as quickly.

> Take charge of your situation. Dont become victim to it. Not to mention
> that MS isnt even diagnosed until after the second exacerbation. By
> definition. It could be anything thats wrong with you. Hell, all your
> syptoms except your floaters (which everyone has) and the pain you feel
> when you bend your neck forward, can be caused by hyperventilation. The
> neck thing is probably caused by your slipped discs. Just an opinion.
> But dont wait on others, take charge. Be a huge GIANT XXX until the
> situation is resolved to your satisfaction. Hell, you could have an
> endocrine problem thats causing you to subtely hyperventilate. Who knows?
> But dont wait for permission from others to go see more neuro's. If its
> psychiatric, bite the bullet and deal with it like a man.

This is the frustration. I know I'm getting worse and yet so far, the
symptoms can't be observed to anyone on the outside. I suppose I'll have to
wait until I have a clear physical deficit before any of the doctors will
acknowledge that this is a bigger emergency than they have led themselves to
believe.

The doctors seem to be running all the right tests, and in that sense I
suppose I'm grateful, but at the same time I feel as though they are letting
too much time pass in between tests and it's getting to the point now where
I'm finding it difficult to do certain things related to fine motor skills
(even typing is becoming difficult). I suppose at this point I DO worry and
hyperventilate over it because I feel sort of helpless. I have been calling
and bugging my doctors and scheduling appointments with different
neurologists....but that may actually hurt me with too many cooks in the
proverbial kitchen.

My boss's advice seemed to make sense, and he supports me in it: find the
best doctor in this type of medicine your insurance can afford, spend a week
with them taking tests instead of going to sporadic doctor appointments over
the course of several months. I'm not sure if that's really going to help
me find the answer any faster, but if I can find a clinic that really is the
premier place to go for these types of problems, and see a doctor who has
encountered my symptoms thousands of times, I might stand a chance.

Rob Duncan

2005-03-23, 5:34 pm

"Jordan Powell" <lonewolf@one.three.net> wrote in message
news:113sasf2ctjh3b5@corp.supernews.com...
>
> "Rob Duncan" <robduncan@gbronline.com> wrote in message
> news:nuKdnbXrJp3j5affRVn-> What do you expect to be done? They obviously
> feel nothings wrong with you,
>
> No -I can assure you, I've NEVER had any physical problems or history of
> hyperventilating or anything like this prior to January of this year.
> This came on sudden and is progressing just as quickly.
>
>
> This is the frustration. I know I'm getting worse and yet so far, the
> symptoms can't be observed to anyone on the outside. I suppose I'll have
> to wait until I have a clear physical deficit before any of the doctors
> will acknowledge that this is a bigger emergency than they have led
> themselves to believe.
>
> The doctors seem to be running all the right tests, and in that sense I
> suppose I'm grateful, but at the same time I feel as though they are
> letting too much time pass in between tests and it's getting to the point
> now where I'm finding it difficult to do certain things related to fine
> motor skills (even typing is becoming difficult). I suppose at this point
> I DO worry and hyperventilate over it because I feel sort of helpless. I
> have been calling and bugging my doctors and scheduling appointments with
> different neurologists....but that may actually hurt me with too many
> cooks in the proverbial kitchen.
>
> My boss's advice seemed to make sense, and he supports me in it: find the
> best doctor in this type of medicine your insurance can afford, spend a
> week with them taking tests instead of going to sporadic doctor
> appointments over the course of several months. I'm not sure if that's
> really going to help me find the answer any faster, but if I can find a
> clinic that really is the premier place to go for these types of problems,
> and see a doctor who has encountered my symptoms thousands of times, I
> might stand a chance.

Then bite the financial bullet and pay for your own visit to Barrow's
Neurological Institute, or the Mayo Clinic, etc. Or wait.

You do understand, if this "is" MS... what your experiencing isnt an
Emergancy. Its going to happen to your dozens, if not hundreds of times, in
all different sorts of ways, for the rest of your life. Our treatments do
little. Theyre better than nothing, but truth is, they dont do a whole
bunch. the best of them only decreases exacerbations by once a year and
none have been shown to be beneficial over the long haul.

So really, even if it is MS, and your diagnosed 5 minutes from now, in the
long run, youll be no better off than if youre diagnosed 2 years from now.
So relax, okay? I know its difficult, if not impossible given the
situation... but the only possible thing worrying can do is make things
worse. Permanently. So relax for your healths sake.

At OHSU they performed a well touted study on Yoga and MS. It has proven
beneficial physical effects. It actually improves outcome. So if youde
like to be proactive, instead of waiting for a brick to land on your head, I
suggest yoga, or tai chi. (which is what I learned in order to calm down.)

Theres tons of things that could cause what your experiencing. Im not sure
why youre interested in MS specifically. Maybe youve been exposed to
neurotoxic chemicals, have some odd screwball virus. Who knows? Ask to be
tested for mycoplasma fermentans incognitus. In some people its completely
indistinguishable from MS. I hope the best for you. In your investigations
dont allow yourself to be bogged down with one particular theory.
Aknowledge it, set it aside, and move on. That way you dont get stuck
fixating on the wrong thing.

Rob

Jordan Powell

2005-03-26, 10:14 am

Rob Duncan

2005-03-29, 7:15 pm