questions

[joan99]

Hello,

I post once in awhile, everytime I get a new symptom that no one can
put a finger on. So here I go again. I have head weird symptoms for
about 30 yrs, thankfully I am still pretty healthy. It started with
vertigo that only happened once in awhile, maybe I would have it
for a week and then it would disappear for two years, then come back.
Plus odd symtoms like my skin felt as if I had a sunburn, but I didn't,
dull pains in my fingers but not the joints. My blood tests always came
back fine so it was attributed to fatigue or overuse, which seemed
logical back then. About 8 yrs ago, everything upped a notch with
pretty frequent vertigo, pins and needles, numbness, bad headaches,
clumsiness. My doctor sent me for an mri which came back showing I
had a 6 to 7 mm lesion in the posterior frontal white matter, which
was nonspecific. I was sent to a neuro who said I probably had mild
MS or a small stroke and it wasn't anything to be concerned about.
He didn't set a follow up appointment so I went on my way. I then
went to see an MS specialist at a university on my own, just to be safe,
who told me he thought I did not have MS, that it was probably anxiety.
I essentially got used to the symptoms until a couple of years ago
when I developed trigeminal neuralgia and my primary sent me to a new
neuro. I got another brain mri which showed the same lesion, my spinal mri
was fine. I see this neuro every few months because I am on tegretol
for the tn. A few months ago I started to have a bit of double vision
and also experienced the words on webpages moving around when
they weren't supposed to be. I think it's called oscillopsia, or something
like that. The neuro sent me to an opthamologist who said my eye
muscles were out of sync but it was nothing serious. About a month
ago, I was sitting in my easy chair, when I went to reach for something
and discovered my hand didn't work. It wasn't weak, what happened
was when I tried to bend my fingers I had so much tremoring that
I could not control my hand or make it do anything. It only lasted about
10 minutes then went back to normal and has not happened again.
I reported it to my doctor, who sent me for an untrasound of my
carotids, which was fine. I'm now 58 and am considered too old for
MS, plus I only have one lesion. Now I am wondering if I might be
getting parksinson's or essential tremors, or maybe the tremors are
just a reaction to the tegretol. I am now waiting to see what happens
next, hopefully nothing, or nothing terribly serious, but am wondering
if any of this rings a bell with anyone or if anyone has suggestions
of how I may be more proactive, if that seems necessary. I really
am at a loss. Maybe this is all normal for someone my age. I have
always found kind souls on this board. Thank you as always for any
help or encouragement.

[annelb]

Hi Joan, Sorry you have been having all these problems without any definitive answers.

One often overlooked reason for neurological symptoms is celiac disease/gluten sensitivity - reaction to wheat and other related grains. Dr. Hadjivassiliou of the UK has written many article about the connection between gluten and neurological damage. He contends that gluten directly attacks both the central and peripheral nervous system. Here is a link to his articles. http://brain.hastypastry.net/forums/showpost.php?p=9023&postcount=2

Here is one abstract about opsoclonus in a child with celiac disease. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16638509&query_hl=8&itool=pubmed_docsum

This lists more reasons for opsoclonus: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17215685&query_hl=8&itool=pubmed_docsum

Have you been tested for lyme disease? There is an active lyme disease forum here http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=&f=175

Hope you find some answers.
Anne

[waggoner1]

Hi Joan,

Your symptoms fit many different syndromes/disease sets, which is way it may be hard for someone to pin point a diagnosis.

Please do some research on APS (Antiphospholipid Antibody Syndrome), it is often misdiagnosed as Multiple Sclerosis. Here are some of the symtpoms:

"APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness."

You can find more info about APS at http://www.apsfa.org/ if any of the symptoms sound familar.

Take care,
Kristina

[JeanieI]

You wouldn't be considered too old for MS...you started having undiagnosed problems 30 years ago.

You could have a mild case that only causes a few weird symptoms or inconviences throughout your life. I have a mild case of MS...minor tingling and dizziness from time to time, fatigue, stiff fingers when the weather is just right.

[timaca]

Another possibility is Lyme disease....although often joints are involved as well, and you didn't mention that. Follows is some info on Lyme disease:

A good symptom list on lyme is www.canlyme.com/patsymptoms.html.

A good article on lyme is www.canlyme.com/donta.html. Another article on lyme is at www.lyme.org/conferences/98_abstract.html (scroll down and read “Lyme Borreliosis and Related Disorders”—it’s about halfway down the page). Also at www.ilads.org, look on the left side. Click on “Treatment Guidelines.” Click on the article by Dr. Burrascano. Also at www.ilads.org, on the right hand side, click on “National Guideline Clearinghouse Treatment Guidelines.”

An article about chronic fatigue syndrome, fibromyalgia and lyme is www.canlyme.com/fibrocfslyme.html.

Some good labs for lyme testing are Igenex lab www.igenex.com
Medical Diagnostics Lab www.mdlab.com
and SUNY at Stony Brook www.path.sunysb.edu/labs/ticklab/TICKLAB.htm
It is suggested that one orders an IgG and IgM Western Blot test, at the very least. Ask the lab to report ALL bands. Ordering tests from more than one lab is also a good idea.

Some good articles on lyme testing are www.canlyme.com/wb.html and www.igenex.com/labtest.htm and www.igenex.com/lymeopt2.htm. Please note that there is NO definitive test for lyme disease. Lyme disease is a CLINICAL diagnosis….lab data is supportive ONLY. See the recent reseach from John Hopkins University: http://tinyurl.com/pjnkm.

A lyme magazine is Lyme Times and can be found at www.lymetimes.org

Some good lyme web sites are www.canlyme.com
www.columbia-lyme.org
www.lymediseaseassociation.org
www.lymepa.org
www.lymeinfo.net/lymefiles.html
www.ilads.org
www.unh-lyme.org
www.lymenet.org (a lyme disease support group)

To find a doctor that knows about lyme, go to www.lymenet.org. Click on flash discussions. Click on seeking a doctor and post there. Also go to www.lymediseaseassociation.org. Look for “Doctor Referrals” on the left hand side. Post there. They will get back to you in a week or so.

[Buttons2]

Joan, how much have you researched Tegretol? Are you using a generic?

Here's just one site you might read: http://www.crazymeds.org/tegretol.html

You didn't mention how long you've been on this drug or the dosage? You might do some research,read some patient's comments about the drug & then discuss with your doctor about your concerns.

I also would ask for the most complete Lyme testing possible because of the lesion, Lyme & MS have many symptoms in common. I've never heard of age being a factor on having MS, personally I'd stay away from any doctor that close-minded!:rolleyes:

Good luck!
Buttons

[joan99]

Your suggestions have given me some things to ponder about and
ask my doctor about. A couple of things have come to mind also
from reading your posts. One, about the lyme disease, a few yrs
back I went to bed feeling perfectly fine and woke up about an hour
later with my knee swollen and red and so painful that I could not
bear to even have a sheet touch it. My doctor did not take xrays but
sent me to have an ana (I think that is what it was called) test for
lupus. It was negative and she said I just had osteoarthritis. This
has not happened again--another random symptom, but I don't believe
I have been tested for lyme disease. I grew up in New England
and loved to go in the woods and have been bitten by ticks many
times, but it was decades ago. Another thing I recalled was that
I used to have Raynaud's syndrome when I lived in cold weather.
Maybe there is a circulatory issue also.
I will ask my doctor about these things at my next visit and check
out the tegretol side effects also. I don't take very much but I
am small so it could have an effect.

[timaca]

HI Joann99~ Well, lyme disease should certainly be considered since you've been bitten by ticks many times and had a swollen knee. It can present in ways like you describe, or it can present in such a way that a person goes from very healthy to very disabled in a short period of time (which is what happened to me).

I would highly suggest you read carefully the links I posted. I would also wander over to www.lymenet.org and click on "flash discussions" and then "medical questions" then read the newbie links there. It will get you more familiar with lyme disease to see if it seems to be a match for you.

If so, then find yourself a lyme literate doctor. Unfortunately, most doctors know squat about lyme....I went to 17 who didn't have a clue. Sounds like you've been to quite a few yourself...and they didn't consider the possibility. :confused: I ended up with a specialist at Columbia Univ. Medical Center who evaluated me and found me so sick as to need IV antibiotics! :eek:

Good luck....post here or lymenet if you have further questions.

Timaca