neurological issues

[daisymay]

Hi, all! I took a break for a while because everything has just been plugging along the same. There's not really anything new happening to me, but the neurologist has been running some tests and I'd like some input

I suffer from ataxia and peripheral neuropathy. I trip often, and my muscles fatigue quickly too, which the dr is calling muscle weakness. I also have a tremor, but it has been there since childhood. I once had a dr tell me I might have sjogrens (I have the dryness symptoms and some joint issues), but the only positive test I had was an ANA of 1:80. I have raynauds, but the rheumy I was seeing back then thought it was probably primary. Add to that, some of the joint stuff can be attributed to by hypermobility syndrome.

Fast forward to now. The neurologist finally decided that my ataxia was worth investigating. He sent me to another neuro who specializes in neuromuscular disorders. He has tested me for a ton of stuff, all of which has come back normal except having a slightly low C3 twice (within 10 points of the low end of normal). Normal mri and emg, too. He suggested me going to a rheumy, which I'm a little resistant to. I spent 10 yrs of my life going to rheumys with nothing but the weak positive ANA. I've wondered for a long time if my muscle issues are more tied to the tremor I've had my whole life.

Since I've heard of neuro issues sometimes being tied to autoimmune stuff, I was looking for thoughts on if I should attempt going to the rheumy. For now I talked him out of it. I don't want to go against my dr, but my main fear is of the neurologist just  assuming all of my neuro issues are autoimmune based. Some may be, but the tremor and quickly tiring muscles have been there as far back as I can remember. I'm afraid he'll not continue to investigate the cause of those things if I get wrapped up in seeing a rheumy. That he will not separate out the things I've had since childhood from the things I've had in recent yrs. I guess it's a case of knowing a lot about your own body, but still wanting to trust the dr, too.

[irish]

Hi daisymay, Good to hear from you again. I am wondering if the neuro checked you out for myasthenia gravis. You can do a search on that and see if you have symptoms that might be pertinent. I have had ataxia since early 1990's and have had several diagnoses that could account for it. First off, back then I asked docs if the ataxia could be from my thyroid issues and of course they said no. I had trouble knowing where to place my feet when I walked plus the poor balance. I always have to watch where I walk and watch for curbs, etc. One of the symptoms of thyroid disease is ataxia as listed in Mercks Manual which is a long standing medical book.

I have since learned that neuropathy is often one of the first symptoms of Sjogrens and I have noticed that quite a few people on here have had this happen to them. The peripheral neuropathy can cause some ataxia also just because it is a sensory thingy. The ears, eyes and feet play important parts in our balance---along with darkness!

The testing for the myasthenia gravis is the antistriated muscle antibodies. This is the one that was really high for me and has stayed high all these years even with the IVIG. For the record, a person can have Sjogrens without the positive blood work and the same is true of Myasthenia. These autoimmune issues are something else.

I am on your side when it comes to putting off the rheumatologist for now. I am going to suggest an immunologist is it is possible. One of these docs would probably be able to do the more complicated testing necessary to hone in on diagnosis. I know met immunologist does some of the most unusual blood work and will figure out what is going on. Most doctors have never heard of the blood work he does. Immunologist are usually interested in genetics also and do some of the testing for some of the weird diseases. Neurological diseases are often in this category and you might well benefit from this aspect of the immunologist.

I hope you can get some help sorting this out. Your neuro may be your best option also cause of the testing they can do. Good luck and let us know how you are doing. Irish

[daisymay]

Interesting about the immunologist...I will do some research on that!

He just tested for myasthenia gravis and that came back negative. I don't know the numbers, just that it was negative. At the last visit the neurologist said "how about you and I keep looking" when I turned down the rheumy idea. So that's where I am now. Will see him again in 3 months. That will give me some time to research immunology.

Thanks so much!

[Joe S.]

My new doctor at the VA looked over my supplements and said that Acetyl-L-Carnitine and R-Lipoic Acid were good for nerve issues.

[daisymay]

Thanks! My pcp just recommended a regimen of vitamin C, fish oil, and tumeric w/black pepper. Haven't tried it yet and he said it takes 3 wks to make a difference

[Dawnmist]

With EMG and Nerve Conduction studies being normal, another thing to ask your Neurologist for is testing for Small Fibre Neuropathy via a Skin Punch Biopsy.

I agree with Joe regarding Acetyl-L-Carnitine and R-Lipoic Acid being good for neuropathy. Also include Vitamin D and Vitamin B12 - but absolutely avoid any supplements containing B6 *unless* you have been confirmed to be deficient in it, and if you are confirmed deficient make sure that your doc keeps an eye on your B6 levels so that you can stop taking it before pushing it too high/can balance the dose to be right for maintenance for you. B6 can build up in the body, and if it gets too high it becomes neuro-toxic and can itself cause Small Fibre Neuropathy...and it is sadly easy to push it too high by taking supplements as most people get plenty of B6 through what they eat (provided that they don't have a condition that blocks absorption). The last thing you want to do is to accidentally make things worse thinking you were looking after yourself.

[daisymay]

Dawnmist, he mentioned a punch biopsy, but said that it would only tell us if I have small fiber neuropathy, not tell us what's causing it...so he's hesitant to go there. He mentioned that it is possible to do a muscle biopsy but he "doesn't want to put me through that."

I've had all the tests that can weed out a B deficiency with all negative results, but thanks for the tip on that!

[irish]

With your new regimen including the turmeric with black pepper I thought I should tell you to include lettuce. Just a tease. Your list sounded like it would fit on a nice salad. Hope this regimen helps your out. Irish

[daisymay]

Thanks for the smile you gave me, Irish! 

[vrystaat]

I have SS and Polymyopathy. My legs are predominantly affected. I am ataxic and a fall risk. My muscle enzymes (CPK) have always been elevated, and go up and down. I am off all medications due to side-effects. The best way to diagnose is a muscle biopsy. My polymyopathy lasted for 15 years without a diagnosis. I encourage 2nd or even 3rd opinions. Early treatment with Cellcept may have staved off the disease.

[daisymay]

The dr said  he could do a muscle biopsy, but "doesn't want to put me through that."