Gluten Ataxia (only)?

[tiredofdoctors]

I have been off the Celiac forum for several weeks. I am pretty frustrated. I have no antiendomysial antibodies, no transglutaminase antibodies, and my small bowel biopsy was negative. Hence, no celiac disease. The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

I am now in a wheelchair. I thought things had plateaued, but found out yesterday from the neurologist that I'm getting worse. I've been to Hopkins and Mayo, and have found out that basically, the neurologists there pompous ( s) insert whatever expletive you choose.

Every article I have read about gluten ataxia gives a really grim prognosis for my symptoms improving. Each says that the goal is to stop the progression, but none that I've read mention return to prior function.

Does anyone know ANYTHING that can help me with this?? My neurologists have suggested (months ago) that I apply for Social Security disability, but I have refused, continuing to believe that I'm going to get better. Am I fooling myself?

Any help you can give me would be greatly appreciated

[Guest nini]

sorry you are having such a rough time of it.

chiropractic really works for me, and I don't know if you have considered it or not. It helps to keep the Central Nervous System free from impingement and keeps it functioning better. Years ago I was told that I would be in a wheelchair within 5 years. Well, it's over 10 years since then and no wheelchair.

[tarnalberry]

The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

<{POST_SNAPBACK}>

Regardless of the tTg, EMA, and biopsy results, the fact that you have elevated anti-gliandin antibodies means that your body is immunologically reacting to gluten, so the right thing to do is maintain a gluten free diet. If the damage wasn't severe enough (some doctors require completely flattened villi, not merely damaged) or if enough samples were not taken, then a false negative is quite likely.

[skbird]

Have you had your B12 levels looked at? Many people are B12 deficient and this can present in many neurological ways. If you are deficient, you need to be taking sublingual B12 or getting shots. It can be several months of supplementing before you notice an improvement but people have had many neurological symptoms improve from B12 supplementation. This is a serious condition and should be looked into, if it hasn't been already.

My best to you

Stephanie

[tiredofdoctors]

Thanks for all your input. I read the biopsy of the intestinal villi -- they are pink, healthy, and plump. B12 levels are great -- I just had them checked again. I've tried chiropractic, as well -- no luck there, so far. My biggest concern, I guess, is whether the ataxia and neurological pathologies in my muscles are reversible. If you stumble across anyone who has had their neurological conditions reversed, I would REALLY like to hear that! I'm looking for a support group in my area -- my endocrinologist suggested that I hook up with them, also, so that they can help me learn what to do and what NOT to do. I had thought I was doing O.K., but it appears that I'm not doing as well as I thought I was at reading labels.

[bluelotus]

i have never heard of gluten destroying the cerebellum - can anyone please elaborate on this? scary to me b/c i get "brain fog" after being glutened as well as intense headaches (maybe migranes, but I don't really know what the difference is)......do all of us need to be concerned with brain health? are we more prone to problems in that aspect? any input is appreciated

[Claire]

I have a fairly recent diagnosis of cerebellar ataxia. I have a medical background, am familar with neurological diseases (in general) and am doing ongoing research on the subject.

I will provide here a little personal history before discussing ataxia.

I may or may not have celiac. As I was on a diet (for 15 years) that eliminated bread and just about everything with flour in it, the celiac blood work was negative - more than likely a false negative. Because grains rather than gluten was identified as my problem - I just cut out the big offenders containing grains but did not go 'gluten free'. Big mistake.

I am now into the third year of neurological symptoms - these worsening in the last year. Needless to say idiot doctors have complicated the issue. If I told about that it would be much too long a message. I am slowing approaching some definitive conclusions but much too slowly for my liking.

The second neurologist that I saw suspected celiac ataxia- a degeneration of the cerebellum (the area of the brain that governs conscious motion - balance, gait, talking, swallowing, etc.) When blood work was negative (never should have even done that test) he handed me off to another neurologist - a motion specialist involved in ongoing studies at NIH.

This guy diagnosed the ataxia - but he thinks it is a genetic ataxia rather than a gluten induced ataxia - although he recommends that all patients with cerebellar degeneration be on gluten free diet - celiac or no celiac. I personally think he is wrong about my problem. Soon we will find out. I am scheduled for genetic counseling and gene mapping in mid October. If there is no gene marker, then I most likely have celiac. I have asked them to do the mapping for celiac at the same time they do the other mapping. Hopefully they will

I will make a few remarks here about ataxia but anyone wanting any info that I have gathered can just email me and I will get something out to you. I will be glad to communicate off line.

As most of you know - celiac is not a new entity but it is definitely the new kid on the block as far as doctors are concerned. It has long been considerd a gastrointestinal disorder. The neurological aspects of it are very new in all but the most sophisticated medical circles - think researchers etc. Cerebellar ataxia is one of the many neurological disorders that can be traced to celiac disease. There are other possible causes (B12 deficiency, serious Vit. E depletion, genetic disease etc.). MS, Lupus are two autoimmune diseases that have the same type of cerebellar degeneration - and these have both been related to Celiac - thus to gluten.

Neurologoical damage of this type is not considered to be reversible. It may be slowed down, even halted (if it is gluten related) but generally what is lost is lost. You are better if you are not getting worse.That must be the goal. Physical Therapy (vestibular training exercises) won't make you well but may give you some improvement and doing these exercises 'uses' the neurons - helping to keep them alive.

Anyone with ataxia must be totally, totally gluten free. The neurologist told me that a single grain of gluten put in a petri dish with a drop of blood from a celiac disease patient will activate immediatley and can sustain activity for days - even weeks. This 'activity' even without conscious symptoms is what does the damage.- silently attacking the cells in the brain (or other body cells).

Supplementation with 200 - 400 units of CoQ10 has helped some people. I take this and it has significantly helped my energy level. I may be tired but I am not comletely wiped out as I was.

I do not know if it will improve the gait and balance problems for me - he has done so for others.

I have consulted a Naturopathic doctor and am taking MediClear - Dietary supplement - Thorne Research Inc - Dover, Idaho. This is for inflammation, allergies, detox, and gastrointestinal integrity. Also probiotics. I will have my first accupuncture treatment with the Naturopathic doctor later in October. I am anxious to see if this has any effect.

There is an abundance of material on this subject. I will be more than glad to provide any help I can and to correspond.

The rest is in the details.

Gluten is a demon. Hope these lengthy remarks are not too overwhelming. Claire

[Claire]

i have never heard of gluten destroying the cerebellum - can anyone please elaborate on this?  scary to me b/c i get "brain fog" after being glutened as well as intense headaches (maybe migranes, but I don't really know what the difference is)......do all of us need to be concerned with brain health?  are we more prone to problems in that aspect?  any input is appreciated

<{POST_SNAPBACK}>

HI - I have already posted a long reply (see below)to the initial message. Yes, yes, yes - be concerned about brain health. I am a good/bad example. Note my comments about the neurologist who recomments gluten free for all his patients with cerebellar degeneration. Even if it is not the cause, apparently it acts as an irritant and can make bad matters worse.

Also it is rather intimidating to know how little gluten - just a grain - can set off a reaction - even when you don't 'feel' a thing!

What to do? Eat really really smart. Claire

[Claire]

i have never heard of gluten destroying the cerebellum - can anyone please elaborate on this?  scary to me b/c i get "brain fog" after being glutened as well as intense headaches (maybe migranes, but I don't really know what the difference is)......do all of us need to be concerned with brain health?  are we more prone to problems in that aspect?  any input is appreciated

<{POST_SNAPBACK}>

HI - I have already posted a long reply to the initial message. Yes, yes, yes - be concerned about brain health. I am a good/bad example. Note my comments about the neurologist who recomments gluten free for all his patients with cerebellar degeneration. Even if it is not the cause, apparently it acts as an irritant and can make bad matters worse.

Also it is rather intimidating to know how little gluten - just a grain - can set off a reaction - even when you don't 'feel' a thing!

What to do? Eat really really smart. Claire

[Claire]

Sorry for the double post. I was trying to correct the 'see below' and I messed up. Claire

[Eliza13]

It is truly amazing what the little bugger (gluten) can do to us. I have a looooooonnnnnggggg list of complications. I've had them for years, but was only recently diagnosed. The one thing that I can say for sure is that most doctors are indeed clueless. My doctor sent me home after telling me I had fat in my stool and a high WBC, and after I complained about an elbow rash (on both elbows!), after I told him that I poo 10X per day.....He was also aware of my symptoms below, chalking it all up to STRESS. I know that I am not a doctor, but even I knew that it was odd and not a coincidence that I had a very itchy rash on BOTH of my elbows. He said it was exzema!!!!

SKAR

[Nevadan]

I'm an apparent non-Celiac gluten sensitive person. My symptoms include such things as osteoporosis (male dx'ed at 55), mild anemia, mild peripheral neuropathy, etc. You might want to read "Dangerous Grains..." by Braly and Hoggan, a book which focuses on gluten sensitivity without celiac disease. You might also want to get DNA tested for this as well. It won't prove you have anything, but it will indicate what you are subject to having. I had mine done by Enterolab and found I have a double DQ1 gene pair which makes me unlikely to ever have celiac disease but makes me very likely to have gluten sensitivitly (which I had alread self-diagnosed by diet) with lots of undesirable neurological problems. That was enough to motiviate me to be gluten-free.

Hope this helps.

George

[tiredofdoctors]

Great info -- thank you. I, too, am a medical professional -- I am hoping that someone out there will have developed alternate neuropathways in the cerebellum which restores normal function. There are exercises "Frenkel's Exercises" which were developed in the late 1800's for patients with Parkinsons -- they are also used for patients with ataxia, but very few practitioners know of these. I have BARELY been responding to these, but maybe someone else can find a physical therapist who will know how to implement these and can get better results.

My neurologist has been asking many questions with regard to family history. I have a grandfather who was diagnosed with "Parkinsonism" by a quack old-time family doctor. He had the exact same symptoms as I do: Marked fatigue, ataxic gait, dysphagia, intention tremor, hyperreflexia, spasticity, dysarthria, proximal muscle weakness, dysmetria and arthralgia. In addition, he did not respond to L-Dopa or Sinemet. My father has idiopathic polyneuropathy (often diagnosed in alcoholics as Werneke-Karsakoff's syndrome, but my father is not an alcoholic). The neurologist has also asked if we have had any children born with mental retardation. That has not happened.

My limited understanding of gluten ataxia is that it may very well be linked to a genetic predisposition. Most of what I have read has also indicated that, in addition to antigliadin antibodies, you will also produce anti-perkinje cell antibodies. The cerebellum is made up, in large part, of perkinje cells. The cross-reaction of the antigliadin and the antiperkinje cell antibodies is the process by which the cerebellar tissues are destroyed.

A question which I have not found an answer to is this: Is there a blood test for anti-perkinje cell antibodies? Are the antibodies found in CSF? Are antigliadin antibodies found in CSF?

I am going to try to CoQ 10 which Claire suggested. I am also taking probiotics, and have in the past tried Biozyme and Inflaguard, which have helped with the arthralgias.

I didn't mean to scare anyone out there. Again, I have been confirmed negative for Celiac disease (multiple times over). A personal message to bobcatgirl -- I would talk to my physician about the headaches, brainfog, etc. after ingesting gluten. Also, start looking at your family tree for any neurological diseases any of your "forefathers" or "foremothers" may have had.

Another personal message to Claire: I am VERY interested in what the results are of your genetic counseling and gene mapping. In as much as I am concerned about myself, I have two children. My daughter, who is 19, has already displayed the same thyroid signs which I displayed as a teenager. My son, who is 23, had cerebellar damage during delivery (high forceps -- 9lb 13oz first born to a young mother after 48 hours of labor -- very cruel and incompetent obstetrician). He is fortunate that it is limited to a positive Rhomberg's and the inability to perform tandem gait. The thought that it could get worse, though, frightens me. Please keep me informed with regard to the findings, if it is not too intrusive that I ask.

Sorry this is so lengthy, but I'm starting to get more and more frightened -- I think that, as a healthcare professional, I have chosen to ignore my symptoms too long this time. If I had a patient with these symptoms, I would have insisted that he/she pursue this with a vengeance two years ago or more.

[Claire]

Great info -- thank you.  I, too, am a medical professional -- I am hoping that someone out there will have developed alternate neuropathways in the cerebellum which restores normal function.  There are exercises "Frenkel's Exercises" which were developed in the late 1800's for patients with Parkinsons -- they are also used for patients with ataxia, but very few practitioners know of these.  I have BARELY been responding to these, but maybe someone else can find a physical therapist who will know how to implement these and can get better results. 

A question which I have not found an answer to is this:  Is there a blood test for anti-perkinje cell antibodies?  Are the antibodies found in CSF?  Are antigliadin antibodies found in CSF?

I am going to try to CoQ 10 which Claire suggested.  I am also taking probiotics, and have in the past tried Biozyme and Inflaguard, which have helped with the arthralgias.

Another personal message to Claire:  I am VERY interested in what the results are of your genetic counseling and gene mapping.  In as much as I am concerned about myself, I have two children.  My daughter, who is 19, has already displayed the same thyroid signs which I displayed as a teenager.  My son, who is 23, had cerebellar damage during delivery (high forceps -- 9lb 13oz first born to a young mother after 48 hours of labor -- very cruel and incompetent obstetrician).  He is fortunate that it is limited to a positive Rhomberg's and the inability to perform tandem gait.  The thought that it could get worse, though, frightens me.  Please keep me informed with regard to the findings, if it is not too intrusive that I ask. 

<{POST_SNAPBACK}>

I like your name. Aren't we all.

I will be trying the Frenkels but right now am having the vestibular training and after a month or so with that will be going to Tai Chi exercises. This was recommended by neurologist.

As you no doubt know. Parkinson's is a catch all for everyone of has a tremor or a gait problem that doesn't have some very obvious explanation. Just like 'stress' gets blamed for everything- an overused cop out.

Gluten ataxia is associated with celiac disease and with non-celiac gluten sensitivity - both genetic disorders. From what my most recent neurologoist says, gluten can be a factor in many ataxias where it is not the primary cause. I asked him if he was describing an 'irritant' and he said that more or less was it. He referred to MS and ALS impatients whose symptoms improved when gluten was removed from the diet.

This may be the test you are looking for: Anti-Purkinje Cell Cytoplasmic Antibody.

Good luck with CoQ10. It certainly has been good for me.

Indeed this is a bit scary. I am most anxious to know for certain what I am dealing with.

I will be glad to share the results of my upcoming NIH experience. Claire

[bluelotus]

Thanks for the advice, claire and tiredofdoctors. I have looked into migraines more and am pretty convinced that this explains my headaches and vision issues (prior to headache). Problem with my family - my mother was adopted, so no history there. Do you two think that ataxia is something that those with celiac disease or gluten sensitivity should be monitored for? I wonder if we do, in fact, have a predispositiion. This is just so scary to me. Some people fear heights - I fear things like brain issues or brain tumors (I'm weird, yes, but the idea that these things are often misdiagnosed and the tests used to diagnose them are usually used last minute.....so scary to me). Anyway, best of luck to the two of you. I appreciate the both of you sharing your stories for everyone's benefit. Thank you.

[Claire]

Thanks for the advice, claire and tiredofdoctors.  I have looked into migraines more and am pretty convinced that this explains my headaches and vision issues (prior to headache).  Problem with my family - my mother was adopted, so no history there.  Do you two think that ataxia is something that those with celiac disease or gluten sensitivity should be monitored for?  I wonder if we do, in fact, have a predispositiion.  This is just so scary to me.  Some people fear heights - I fear things like brain issues or brain tumors (I'm weird, yes, but the idea that these things are often misdiagnosed and the tests used to diagnose them are usually used last minute.....so scary to me).  Anyway, best of luck to the two of you.  I appreciate the both of you sharing your stories for everyone's benefit.  Thank you.

<{POST_SNAPBACK}>

I think awareness is half the battle here. Many celiac disease people are not aware of this possible complication and their doctors probably would miss it too. If you know about it then you can only be gluten vigilant and watch for any symptoms that suggest a neurological issue. 'Monitoring' in the case of ataxia would mean MRI testing - not something you want to do all the time! I recognized my symptoms but they came before I related any of my problems to celiac so gluten wasn't even in my thoughts. I was avoiding grains but not gluten specifically. Once I suspected celiac or gluten sensitivity I met with a stone wall from my doctor. Even now, as I said earlier, celiac is on the back burner as far as my doctors are concerned. I have to go along and play the game and see either the latest neurologist or myself proven wrong. I am totally gluten free now as I will be regardless of the ultimate diagnosis. Just be familiar with signs of neurological problems. I was aware but have had to push hard against the doctors who did not take me too seriously at first. The problems had to get worse before they really acknowledged that I had a serious problem. You know how garage mechanics never like women to point out that this or that is wrong with a car. Doctors are like that - they forget that it is your body and you, more than anyone else, know when something is amiss. Hang tough. Just think, you are better prepared than you were even a couple of days ago - you have learned some things. That's what's so great about this forum. You can always learn here. Claire

[tiredofdoctors]

Hi Guys --

Claire, thank you for the info about the blood test -- my doctors are finally listening to me, and I feel pretty certain that one of the two of them will order it. Also, good luck with the Frenkel's exercises. My biggest problem is that I have about 12-14 minutes in which my muscles will function prior to turning to jello -- it's just not enough time to complete the exercises. I am a STRONG proponent of Tai Chi. As soon as my body will accept single leg stance, I'm there! Right now, my neuro symptoms are increasing (lower reflexes are 4+ and uppers are 3+), my most recent muscle biopsy shows neuropathic changes, I've developed L'hermittes sign and I'm starting with a babinski bilaterally. If I had a crystal ball, I'd say a tap is in the not-so-distant future. I'm still with you in that gluten is probably the catalyst to all of this. Scary stuff, huh? I'm tired of being tired, and I'm even more tired of falling! I took a header off the porch the other day that was BRUTAL!

Bobcatgirl -- my sister has the same dilemma as you. She is adopted -- back in our day, all adoptions were CLOSED and NEVER to be opened. In addition, my parents are from the generation of the "stigma" of adoption and simply don't want to discuss it.

I agree completely with Claire. Monitoring would mean MRI's, etc., and it's a hassle with regard to referrals, insurance coverage, etc. Being aware IS the best way to keep in check with whether symptoms are developing. My choice to ignore the symptoms, chalk them up to "fatigue" and "overwork" cost me, ultimately, a significant amount of function. I started out walking differently -- my husband, my secretary, billing clerk, and friends all told me about it. Even my patients! Then, I began bumping into walls -- again, I was told by all. My secretary even told my billing clerk about me falling "all the time". She said she would hear a "thud" and know that I had fallen again. During the entire ordeal, I STILL chalked it up to being tired. Part of this, however, was due to the fact that I had seen a physician who was unbelievably CRUEL, and ultimately, wrong. Believing that he HAD to know more than me, I trudged forward, ignoring the symptoms. Fortunately, in January of this year, I started seeking out kind, determined physicians -- ultimately, they were the ones that suggested the link between Gluten and my neurological conditions.

Another thing that you may want to make sure is in check is your thyroid gland. I had Hashimoto's thyroiditis and a goiter the size of Texas! It started when I was 13, and by the time I was 42, it had grown to wrap its way around my trachea and down underneath my breastbone. Interestingly, my endocrinologist said that some blurred vision can be attributed to myxedema from thyroid dysfunction. From what I have read, also, Celiacs tend to have an increased predisposition to Hashimoto's -- easily detectible by a blood test. Find a good endocrinologist who won't blow you off. These days, healthcare is a consumer's market. You're the consumer -- you're paying top dollar for either the best or the worst -- it makes no difference -- so demand the best.

Another caveat -- I wouldn't waste my time at either Hopkins nor Mayo. I was completely disregarded, and at Mayo, the physician rolled his eyes when I mentioned Gluten ataxia, lectured me of all the things I would have to have to have Hashimoto's DESPITE having my history which included the post-surgical biopsy stating Hashimoto's thyroiditis, and brushed off each question I asked -- even though they were all based on sound medical research and were relevant questions. I found both places to have an air of superiority, and found not only the attendings, but the residents to be pompous and condescending.

Oh well, enough Kvetching! Good luck

[bluelotus]

Thanks again, tiredofdoctors. I have had my thyroid monitored and, not suprisingly, have hypothyroidism. Not sure as to the type per se, whether autoimmune-related, etc. Brought this lack of knowledge up with my doctor and he didn't see the point in figuring it out. I will definitely keep my eye out, so to speak, regarding the walking. I just hope my doc's will be more understanding/empathetic, though I think pigs will have to fly first!

[tiredofdoctors]

Bobcatgirl: Find a new doctor. He/She is not listening. Get to an endocrinologist and have the antibodies tested. Often, you don't need a referral. You have a known autoimmune disease -- don't let autoimmune thyroid disease compound it.

Don't wait until you're my age (43) before taking up for yourself and letting the MD's know that you are there for business, not just to take up waiting room space. It's a consumer's market, and you're the consumer. Demand the best, and don't back down. I was so worried about making waves and it impacting my practice and the referral sources I had that I was completely passive until this year. NOT ANYMORE. I had to close my practice because I can't walk, much less work, and I'm NOT going to let them get by with not listening to me. Learn at an earlier age than I did. If you offend them, so what? Doctors are a dime a dozen anymore -- and none of them carry their black bags to your house like they used to, so you don't have to worry about them not coming back if you make them mad!

Put your foot down -- I'm rooting for you!!

[Claire]

Bobcatgirl:  Find a new doctor.  He/She is not listening.  Get to an endocrinologist and have the antibodies tested.  Often, you don't need a referral.  You have a known autoimmune disease -- don't let autoimmune thyroid disease compound it. 

Don't wait until you're my age (43) before taking up for yourself and letting the MD's know that you are there for business, not just to take up waiting room space.  It's a consumer's market, and you're the consumer.  Demand the best, and don't back down.  I was so worried about making waves and it impacting my practice and the referral sources I had that I was completely passive until this year.  NOT ANYMORE.  I had to close my practice because I can't walk, much less work, and I'm NOT going to let them get by with not listening to me.  Learn at an earlier age than I did.  If you offend them, so what?  Doctors are a dime a dozen anymore -- and none of them carry their black bags to your house like they used to, so you don't have to worry about them not coming back if you make them mad!

Put your foot down -- I'm rooting for you!!

<{POST_SNAPBACK}>

Cheers! Reread Bobcatgirl's post more than once. You have to take charge if you want to win the battle. What's the worst thing that can happen if you challenge a doctor? He can tell you to find another doctor. Now that's not such a bad idea! Claire

PS - you say you can't walk? Is this ataxia?

[debmidge]

Tired of Doctors: what kind of practice did you have? I must have missed that (my computer/AOL is acting up and my cursor keeps jumping and it's going to and fro different posts...)

As to collecting SSI, if you wait too long you will be disqualified....my husband was too ill to work many years ago, but he kept thinking he'd get better (during misdiagnosed celiac years and he never got healthy enough to go back to work, they just furloughed him and told him to come back when he felt better...) Anyway, a year later we applied for SSI and were rejected because it was year later! We lived on my salary only for that year. Social Security office told me that in order for my husband to collect he'd have to go back to work for a number of weeks/months and then re-apply. That was impossible with his health condition. We were between a rock and hard place and very young, didn't know the "system". Years later I contact a congressman/senator to undo red tape, he was willing, but the gastro would NOT release his records to me only to senator, and senator had to write the letter. Again, a dead end as congressman/senator didn't want to be involved that deeply....I was to do my own letter.

So we've been like this ever since and I've pretty much accepted it that I was the income maker and my husband, who was diagnosed properly in 2003 was the "houseperson."

So my point is, go immediately to SSI never wait.

I have a friend who is on SSI due to other intestinal disease issues, not celiac, and had to get an attorney to prove to SSI that she had health problems which qualify for SSI.

In court the judge said to her "Why can't you work even part time?" well we all know that you can't pay rent, at least not here in NJ, on a part time clerk's salary. She was smart, she said to judge (after they discussed how she gets diarrhea attacks and she worked in food store as one of those people who give you samples of new foods and products, and that was not acceptable to food store, etc. and she was out of work a lot due to stomach pylori uclers - this is before they discovered that pylori was the cluprit and had treatment for it. Once she had treatment she ended up in hospital as anti biotic nearly killed her. but I digress..) So she says to the judge, "Well perhaps your office can hire me then? No one else seems to want me with my medical conditions..."

Judge awarded her SSI that day.

[debmidge]

Q: Does Gluten Ataxia start with peripheral neuropathy? Are they connected?

[Claire]

Q:  Does Gluten Ataxia start with peripheral neuropathy?  Are they connected?

<{POST_SNAPBACK}>

In my case it did not. No indication in anything that I have read that this neuropathy is any indicator. Many people with ataxia do not have neuropathies at all. Claire

[tiredofdoctors]

Hi Claire! Correction -- I can walk, but like a drunk. I stagger, bob and weave, and fall a LOT! It's like someone is turning a light switch on and off on my muscles -- they give out, then overcorrect. I use a walker for short (very short) trips, but a chair for any length of time. I also have some neuropathy/myopathy issues. The neuropathy we knew about -- the myopathy we just found out about through a second muscle biopsy. They're still puzzled in that I have a profound amount of muscle fatiguability -- as I said about the Frenkel's exercises, 12-14 minutes of work, and my muscles are jello. After posting to the message board, my arms are finished. It takes about 30 minutes to recover. Strangely, baths are the worst -- can't get out of the bathtub independently. Sounds a lot like MS, but so far I have only 3 lesions on my brain which has not changed as this has progressed, and I have a new lesion at C2-3 on the cord. No oligoclonal banding in the CSF previously. Haven't had a Tensilon test, but don't have anticholinesterase antibodies. Any thoughts????

[tiredofdoctors]

deMidge: Thanks for the advice. I'll be there Monday Morning. I'm a physical therapist. I had the practice of my DREAMS. I scheduled each patient for one hour with me -- no 16 year old kids overseeing exercises, etc. I started with lots of manual therapy, then as we progressed to exercises, I was right there with them - watching for compensatory movements and facilitating the neuromuscular results I wanted while they were doing the exercises. I treated all ages -- from toddlers with hypotonia, LOTS of sensory integration kids, to field hockey, soccer, baseball and football kids, to general orthopedic to women's health -- I treated urinary/fecal incontinence, pelvic pain and obstetric patients. It was FANTASTIC. That has been the part that I have grieved the most. I was finally in an environment where I could practice WELL and do the very best for my patients. It was so fulfilling. Okay, all you asked was what I did -- sorry for the impassioned extras!