Multiple sclerosis support - How likely is it to be MS?

Author

How likely is it to be MS?

cacklebunny@hotmail.com

2005-03-19, 5:17 pm

How likely is it to be MS if you start off with simultaneous tingling
in hands and feet? From what I understand, MS usually appears in one
or two extremeties at a time?

I had a brain MRI done and it showed nothing, plus MRI's on my lumbar,
thoracic and two MRI's on my cervical spine.

An EMG done showed everything normal.

An Evoked potential test showed everything normal.

I've had two lumbar punctures, one of which had the MS profile test.
It showed no oligoclonal bands.

Any ideas? I'm currently being tested for Lyme, heavy metal poisoning,
etc.

Did anyone in this group start off with simultaneous tingling and
numbness in the hands and feet, plus a tingling in the lips and one
side of your face, show nothing on your brain and spine MRI's, and
your spinal taps were also negative?

>From what I've read, it seems unlikely that MS would cause simultaneous
tingling, numbness and muscle pain in the hands and feet, arms and legs
without showing something on an MRI and the other aforementioned tests.

QQQte@webtv.net

2005-03-19, 5:17 pm

are you on any colestrol ( sp ) meds. the pills that lower your blood
fats.... if so they could be your culprit...

have a knowlegable doc, check your b-12 level...

because you have these symptoms going on on both sides of the body it
doesn't sound like m.s........ but you do have something going on. the
worst part is waiting for the doc's to find the problem.

what ever is going on i hope they find it soon so you can get the help
you need...
best wishes.... dory

abdi

2005-03-23, 5:34 pm

Unfortunately MS is diagnosed two ways, either you do have visible lesions,
some marker in spinal fluid or by
a lengthy observation period, during this period if you have a decent
doctor. he will look for other things, like allergies or lime disease and
.... .In the end if no cause is found, MS will be diagnosed. So at this point
find a doctor willing to find alternatives.

--
Quaecomque sunt vera ----
<cacklebunny@hotmail.com> wrote in message
news:1111168975.913904.195110@z14g2000cwz.googlegroups.com...
> How likely is it to be MS if you start off with simultaneous tingling
> in hands and feet? From what I understand, MS usually appears in one
> or two extremeties at a time?
>
> I had a brain MRI done and it showed nothing, plus MRI's on my lumbar,
> thoracic and two MRI's on my cervical spine.
>
> An EMG done showed everything normal.
>
> An Evoked potential test showed everything normal.
>
> I've had two lumbar punctures, one of which had the MS profile test.
> It showed no oligoclonal bands.
>
> Any ideas? I'm currently being tested for Lyme, heavy metal poisoning,
> etc.
>
> Did anyone in this group start off with simultaneous tingling and
> numbness in the hands and feet, plus a tingling in the lips and one
> side of your face, show nothing on your brain and spine MRI's, and
> your spinal taps were also negative?
>
> tingling, numbness and muscle pain in the hands and feet, arms and legs
> without showing something on an MRI and the other aforementioned tests.
>

cacklebunny

2005-03-23, 5:34 pm

Thanks...it's getting scary. I seem to be getting worse and the
frustrating thing is that I can't seem to get doctors to look at me
within a reasonable time. My appointments are usually weeks away. It
seems for something this serious, they should be admitting me to a
clinic for a week and just run a battery of tests until they find
something. But I can't seem to get anyone to take me seriously.

So far, in the past two months, I went from being absolutely fine to
losing my sense of touch (all over my body...I can feel things based on
pressure and hot/cold only); I've got intense pain in the lower back
and can only manage small bowel movements; sometimes frequent need to
urninate; muscle spasms all over my body (both legs and arms); pain in
my calf and upper leg muscles that are made worse when walking; intense
pain in my neck and back (sometimes I get the sensation that my spine
is crawling behind me); eye pain, loss of sense of taste and smell;
tingling/numbness and pulling sensation in my face (the left side) and
numbness of my tongue; my tongue can't discern hot and cold; intense
ringing in the ears ---what the hell?

Of all the stories of MS that I've heard, it sounded as though the
problems either crept up slowly or when they did seem acute, it was
limited to only certain areas of the body (for example, the left leg
and arm)....but this seems to be symmetrical and the sense of touch is
lost throughout. And this all is continuing to happen and seems to be
getting worse.

My god, what is happening to me?!?

Rob Duncan

2005-03-23, 5:34 pm

"cacklebunny" <cacklebunny@hotmail.com> wrote in message
news:1111276601.987466.226410@z14g2000cwz.googlegroups.com...
> Thanks...it's getting scary. I seem to be getting worse and the
> frustrating thing is that I can't seem to get doctors to look at me
> within a reasonable time. My appointments are usually weeks away. It
> seems for something this serious, they should be admitting me to a
> clinic for a week and just run a battery of tests until they find
> something. But I can't seem to get anyone to take me seriously.
>
> So far, in the past two months, I went from being absolutely fine to
> losing my sense of touch (all over my body...I can feel things based on
> pressure and hot/cold only); I've got intense pain in the lower back
> and can only manage small bowel movements; sometimes frequent need to
> urninate; muscle spasms all over my body (both legs and arms); pain in
> my calf and upper leg muscles that are made worse when walking; intense
> pain in my neck and back (sometimes I get the sensation that my spine
> is crawling behind me); eye pain, loss of sense of taste and smell;
> tingling/numbness and pulling sensation in my face (the left side) and
> numbness of my tongue; my tongue can't discern hot and cold; intense
> ringing in the ears ---what the hell?
>
> Of all the stories of MS that I've heard, it sounded as though the
> problems either crept up slowly or when they did seem acute, it was
> limited to only certain areas of the body (for example, the left leg
> and arm)....but this seems to be symmetrical and the sense of touch is
> lost throughout. And this all is continuing to happen and seems to be
> getting worse.
>
> My god, what is happening to me?!?

Im sorry. It doesnt sound anything like MS though. Have you been tested
for ALS and other peripheral nerve diseases? It doesnt sound like MS. I
hope you dont glom onto this particular disease as your diagnosis. Might it
be because you know we have rather normal life expectancies and you fear
ultimately being diagnosed with something much worse? So you prefer to
obsess over MS?

You do know, if it is MS, really, as urgent and panicked as you feel (and
understandably so I might add.) being diagnosed now, or in a year, isnt
going to make much difference to the disease over the long run. You have no
inflamation. You have nothing to treat.

What is it you would like them to do? If you talked them into treating you
for MS somehow (prescribing an interferon or such...) youde be taking those
shots and medications for the rest of your life. Most likely... for no
reason at all. Give it time. Its not even MS unless it occurs more than
once. How do you know this isnt a singular event? You dont. So you cant
legitimaley consider MS as your disease. Theres no reason to. Many people
(tens of thousands) every year, have singular events. Millions of people
have lesions. With no ill effects at all. So even an MRI showing brain
damage isnt proof of MS. Unless its able to be viewed over time. Which is
what youre not giving it. I know you want answers now, but demanding the
wrong answer will do you no good. Start calling around and find your own
neurologist and get a second opinion. One who knows nothing about your
case. Maybe youve been unlucky and have seen some twits? Good luck.

Rob

abdi

2005-03-23, 5:34 pm

Just like Rob said, it is much much more likely to be some thing else, I
have found teaching hospitals, the best place to get attention.

--
Quaecomque sunt vera ----
"cacklebunny" <cacklebunny@hotmail.com> wrote in message
news:1111276601.987466.226410@z14g2000cwz.googlegroups.com...
> Thanks...it's getting scary. I seem to be getting worse and the
> frustrating thing is that I can't seem to get doctors to look at me
> within a reasonable time. My appointments are usually weeks away. It
> seems for something this serious, they should be admitting me to a
> clinic for a week and just run a battery of tests until they find
> something. But I can't seem to get anyone to take me seriously.
>
> So far, in the past two months, I went from being absolutely fine to
> losing my sense of touch (all over my body...I can feel things based on
> pressure and hot/cold only); I've got intense pain in the lower back
> and can only manage small bowel movements; sometimes frequent need to
> urninate; muscle spasms all over my body (both legs and arms); pain in
> my calf and upper leg muscles that are made worse when walking; intense
> pain in my neck and back (sometimes I get the sensation that my spine
> is crawling behind me); eye pain, loss of sense of taste and smell;
> tingling/numbness and pulling sensation in my face (the left side) and
> numbness of my tongue; my tongue can't discern hot and cold; intense
> ringing in the ears ---what the hell?
>
> Of all the stories of MS that I've heard, it sounded as though the
> problems either crept up slowly or when they did seem acute, it was
> limited to only certain areas of the body (for example, the left leg
> and arm)....but this seems to be symmetrical and the sense of touch is
> lost throughout. And this all is continuing to happen and seems to be
> getting worse.
>
> My god, what is happening to me?!?
>

cacklebunny

2005-03-23, 5:34 pm

Thanks, Rob. I do realize I seem to be obsessing over MS, simply
because when I did my own "research" on the Internet it seemed to point
that way...but as some of my relatives have observed, once I came to
that conclusion, I haven't looked too deeply into other causes.

It just seems that after over two months, I'd get some answers...my
loved ones are equally getting frustrated that this seems to be getting
dragged out and my appointments with the neurologist(s) seem to be
weeks or a month apart. Since most of my symptoms so far have been
sensory related, it's difficult to convince anyone that the problem is
there and very real.

I've seen three neurologists, officially. The first was during a
three-day hospital stay back in early February. He ran several tests,
including an EEG but everything came back normal. I did have an
elevated protein count in my CSF for my lumbar puncture, but they
attributed that to an epideral of steroids I had had only two days
before. (but what if that WASN'T the reason for the elevated level?)

The second neurologist was based on a doctor referral made prior to my
hospital visit and he was with the same group that the first
neurologist was with. It didn't make sense to him why I was seeing him
instead of the first neurologist (and I would have to agree), so after
he ran several more tests and did another cervical MRI with contrast
and found nothing, he suggested I go back to seeing the original
doctor.

I then started seeing another neurologist from a group that had worked
on my mother when she had successful aneurysm clipping surgery last
year. This neurologist is very young and they figured that might be a
good thing because she'd be abreast of all the latest developments.
She is running heavy metal tests, Lyme tests and some other more
obscure disease tests. So far, nothing has come up.

The hardest thing about this is that I can't "feel" or taste anymore.
When I touch my girlfriend's hand, I only know it's her based on
pressure and heat. The touch factor is completely gone. It's
horrifying. And if that is being caused by my cervical spine and it
ends up that my spinal cord is more compressed than they had thought,
then that kind of nerve damage could be permanent...and that's truly
horrifying, especially when I can't get these doctors to see me fast
enough.

At night, my lips and face on my left side tingle and my left eye
starts to water down the outermost corner...I understand this is
usually how Bell's Palsy starts...and I know several spinal disorders
have Bell's Palsy as a complication....this morning, I noticed a
strange crease in that corner of my eye, as though something had been
pulling down there during the night. Then I noticed a small amount of
yellow fluid in both my ears, and my ears seem hypersensitive to sound.

I truly appreciate everyone reading this and being understanding here.
It's sort of therapeutic typing this all out and posting it, because it
seems I have little other recourse but to "wait it out."

Joyce

2005-03-23, 5:34 pm

yes it certainly is a beast or monster to diagnose, I had all those tingling
numbness things way before I ever thought of MS. also foot problems, getting
out of bed one day about 15 years ago and just falling to the ground.
terrible foot cramps, hand spasms, draggy tired all the time. but it was not
until 8 or 9 years ago anyone thought to give me an MRI, that sealed my
fate, yes MS. but at least I had an answer.after 30 or more years of being
told nothing was wrong with me and yet I knew their was. people at work
once accused me of being drunk because I bounced off walls and I don't even
drink.

Joyce

Rob Duncan

2005-03-23, 5:34 pm

"cacklebunny" <cacklebunny@hotmail.com> wrote in message
news:1111339716.857140.160270@f14g2000cwb.googlegroups.com...
> Thanks, Rob. I do realize I seem to be obsessing over MS, simply
> because when I did my own "research" on the Internet it seemed to point
> that way...but as some of my relatives have observed, once I came to
> that conclusion, I haven't looked too deeply into other causes.

Not only isnt that unusual. Thats normal. Thats how we all are. We search
and search to find the most pluasible explanation. And to you, you think MS
sounds plausible. Well, from my perspective, knowing a bit about MS, I dont
feel it is. If I were your attending neurologist I wouldnt be thinking MS
is the cause.

Do you have any family members with any forms of Muscular Dystrophy? Do you
know what Wilsons disease is? Any copper metabolism problems in your
extended family?

> It just seems that after over two months, I'd get some answers...my
> loved ones are equally getting frustrated that this seems to be getting
> dragged out and my appointments with the neurologist(s) seem to be
> weeks or a month apart. Since most of my symptoms so far have been
> sensory related, it's difficult to convince anyone that the problem is
> there and very real.

Dont let yourself drive yourself crazy by imagining people dont believe you.
Of course they do. Why wouldnt they? If they felt you were a hypochondriac
they would have said so and recomended a psychiatrist. Doctors do that all
the time. They dont care if they hurt your feelings or make you feel crazy.
They just want to cure you. Fix the body, the mind will recover in time.
Its a myth that people believe a doctor who suspects hypochondriasis wont
bring it up to the patient. Propogated by a moronic media/hollywood. I
cant even imagine why a real doctor wouldnt bring up the possibility. So
dont worry on that front. If they thought it was in your head theyde have
brought it up.

> I've seen three neurologists, officially. The first was during a
> three-day hospital stay back in early February. He ran several tests,
> including an EEG but everything came back normal. I did have an
> elevated protein count in my CSF for my lumbar puncture, but they
> attributed that to an epideral of steroids I had had only two days
> before. (but what if that WASN'T the reason for the elevated level?)

Why woulndt it be? Thats what happens sometimes. These tests are very
specific and markers for MS stand out. They dont hide.

> The second neurologist was based on a doctor referral made prior to my
> hospital visit and he was with the same group that the first
> neurologist was with. It didn't make sense to him why I was seeing him
> instead of the first neurologist (and I would have to agree), so after
> he ran several more tests and did another cervical MRI with contrast
> and found nothing, he suggested I go back to seeing the original
> doctor.
>
> I then started seeing another neurologist from a group that had worked
> on my mother when she had successful aneurysm clipping surgery last
> year. This neurologist is very young and they figured that might be a
> good thing because she'd be abreast of all the latest developments.
> She is running heavy metal tests, Lyme tests and some other more
> obscure disease tests. So far, nothing has come up.
>
> The hardest thing about this is that I can't "feel" or taste anymore.
> When I touch my girlfriend's hand, I only know it's her based on
> pressure and heat. The touch factor is completely gone. It's
> horrifying. And if that is being caused by my cervical spine and it
> ends up that my spinal cord is more compressed than they had thought,
> then that kind of nerve damage could be permanent...and that's truly
> horrifying, especially when I can't get these doctors to see me fast
> enough.

So stop waiting on those neurologists. Call some neurologists office and
make an apt.

> At night, my lips and face on my left side tingle and my left eye
> starts to water down the outermost corner...I understand this is
> usually how Bell's Palsy starts...and I know several spinal disorders
> have Bell's Palsy as a complication....this morning, I noticed a
> strange crease in that corner of my eye, as though something had been
> pulling down there during the night. Then I noticed a small amount of
> yellow fluid in both my ears, and my ears seem hypersensitive to sound.
>
> I truly appreciate everyone reading this and being understanding here.
> It's sort of therapeutic typing this all out and posting it, because it
> seems I have little other recourse but to "wait it out."

Be tough. Dont fixate on your symptoms like youre doing. Itll just drive
you crazy and wont help you one tiny bit. For heavens sake... youre worried
about a sleep wrinkle. Relax... They will eventually figure this out. In
the meantime, stop waiting on others. Find a new neurologist, a new doctor.
Im not suggesting doctor shopping which is what many hypochondriacs do, but
simply starting over. Obviously the ones you have now arent performing up
to your standards.

And keep in mind, this happens to thousands and thousands of people all the
time. And they get better and never discover what caused their illness.
Medicine is in its infancy. Its not nearly as good as we pretend it is.

Rob

Celeste

2005-03-23, 5:34 pm

It does not sound like MS or ALS to me. you did not mention swallowing
problems.

I would look into more obsure things like Wilsons disease or possible
adrenal failure because of the low back pain. an endocrinologist should be
able to tell. Of course kidney prolems can cause that too. Have you been
taking any protien supplements? Have you ever had any bad sporting
accidents? A urologist can check this out. maybe you have a
disintegrating disk and a pinched nerve. Then you should see an Doctor of
Osteopathy.

I think your best bet is to talk to a rhuematologist. They are real god at
diagnosing the most unusual problems. and they tend to span multiple
specialties.

cacklebunny

2005-03-23, 5:35 pm

Thanks. I am admittedly going insane with this. I've noticed now that
my legs feel shaky and they ache so bad from intense spasms. I'm
wondering if I haven't been damned with the even more harsh disease
known as Devic's Syndrome. But so far my eyesight hasn't deteriorated
but I have had eye pain and an increase in floaters in my right eye.

QQQte@webtv.net

2005-03-23, 5:35 pm

i feel bad for you enough to bring tears to my eyes...

my brother symptoms of " arnold chari
' wasn't found for years... god how he suffered and went thru 27
operations to relive symptoms similar to yours.... i know you don't have
that dx but i just wanted to mention his struggle and that he is fine
now.

the doc's thought he pinched nerves all over the place so did
surgery... in the end they found the problem.... i can't remember
exactly anymore how to discribe it.. but it where's a part of the brain
stem slides down into the spine.

there's been others that were dx with m.s and had arnold charii..... and
thank god after being labeled nuts they are doing just fine.....

by the way i have sensory problems all over my body but most to the
right side.... i can no longer imagine life with out them guess i'm used
to it and there as normal as heck to me.... neurontin a med does
help..... your fear alone can compound and bring on more symptoms...

sounds like you have a real bad case of anxiety which is a hell of
problem and needs to be treated... get it treated and then go from
there.... wishing you well. must go to spell check now before i
forget..dory

There is so much good in the worst of us and so much bad in the best of
us that its rather hard to discern which of us ought to reform the rest
of us.....Alain Fournier

abdi

2005-03-23, 5:35 pm

You should go see a neurologist, it does not help you to speculate.

--
Quaecomque sunt vera ----
"cacklebunny" <cacklebunny@hotmail.com> wrote in message
news:1111445407.686171.16380@z14g2000cwz.googlegroups.com...
> Thanks. I am admittedly going insane with this. I've noticed now that
> my legs feel shaky and they ache so bad from intense spasms. I'm
> wondering if I haven't been damned with the even more harsh disease
> known as Devic's Syndrome. But so far my eyesight hasn't deteriorated
> but I have had eye pain and an increase in floaters in my right eye.
>

Rob Duncan

2005-03-23, 5:35 pm

"cacklebunny" <cacklebunny@hotmail.com> wrote in message
news:1111445407.686171.16380@z14g2000cwz.googlegroups.com...
> Thanks. I am admittedly going insane with this. I've noticed now that
> my legs feel shaky and they ache so bad from intense spasms. I'm
> wondering if I haven't been damned with the even more harsh disease
> known as Devic's Syndrome. But so far my eyesight hasn't deteriorated
> but I have had eye pain and an increase in floaters in my right eye.

You dont have Devics disease. And floaters have nothing to do with
anything. Floaters exist in all people. Though were either unaware of
them, or ignore them. We all have crap floating in our eyes, or on the
surface.

Rob

andrewJ

2005-03-23, 5:35 pm

> Be tough. Dont fixate on your symptoms like youre doing. Itll just
drive
> you crazy and wont help you one tiny bit. For heavens sake... youre
worried
> about a sleep wrinkle. Relax... They will eventually figure this
out. In
> the meantime, stop waiting on others.

Wonderful advice :-) ! Don't let the fear of tomorrow destroy today...

andrew

Joyce

2005-03-24, 12:27 pm

Celeste

2005-03-29, 7:15 pm

cacklebunny

2005-03-29, 7:15 pm

andrewJ

2005-03-29, 7:15 pm