Natops

Dr Chemali is my doctor and he is the best of the best when it comes to understanding and treating POTS. I drive 4 hours to him for my visits then 4 hours drive back home We are very lucky to have Dr C on the east coast.

My doctor and I just discussed Cymbalta - he said it would make my dysautonomia worst and he did not recommend it.

I tested positive for the calcium channel N-type AB (part of the Mayo Clinics paraneoplastic panel)

Yup, I feel worst in the morning at wakeup. I am a deep sleeper so I don’t notice it until I wake up, but as soon as I wake up- it feels like I just hiked 20 miles. Legs/feet are supper weak ripped with pain. Takes my medicine and a hot shower to stabilize them. As for the rest of my body – I have been looking for the words to describe my symptoms but you have hit the nail on the head – “adrenaline dumps” is exactly how I feel. I have this slow motion, brain fog, with tachycardia.

Dr. Chemali somewhat dx me with Lambert Eaton last year. I tested positive for the antibody and share about 40% of the symptoms. I actually had the antibody test ran again by a different doctor and the exact results came back. I get screened for cancer every 6 months - so far negative - so doctors think my LEMS is autoimmune in nature. I am going to Mayo Clinic Rochester at the end of August for further evaluation. I hope they can find specifically what's wrong with me. I imagine you have tested positive for some specific antibody.

I just had my skin bio .... I havent yet talked over the results with my doctor. Mine said - "nerve fiber density is within normal limits but there is extensive fiber segmentation and some nerve fiber swelling". So Im not sure what that means. "Extensive fiber segmentation" ? I had a 5.1 (which was marked below average) and i got 11.6m and a 14.5m On one part of the report one doctor said everything was normal and then at another point it said "the density of nerve fibers sweat glands demonstrate length- dependant neuropathic process affecting post ganglionic autonomic nerve fibers". So that doesn't sound normal.

Heheh, You are going to have us all drinking cabbage juice by the end of the week

Hello, I suffer from autoimmune POTS. I have SFN. Weakness. Pain. Autoantibody. So in just the last two week I have developed G.I. issues. I saw on this site some of the symptoms of dysautonomia - (Delayed gastric emptying, Bloating after meals, Abdominal pain, Constipation) and it fit me like a glove. Was wondering if any of you knew some good links to the medical literature on dysautonomia and G.I. issues. What are some of the things you do to cope with G.I. issues?

I've had Dr Chemali's TTT and qsart. Thats how I have my dx. I'm very lucky that his office is only a few hours away. POTS doctors are hard to come by.

Thanks for posting Issie. This is the first piece of literature that I have seen that associates my paraneoplastic syndrome with the sensory neuropathy that is plaguing me.

This monday I am asking my doctor for a referal to Mayo in Minn

I was just at Hopkins Bayview Neuro a few days ago for a follow up. I don't think their neuros do much in the way of dysautonomia. On a plus note - my doctor there did give me an unscheduled skin biop that day because he was interested in my case and wanted to help me. It was very nice for him to just make that happen the way he did.

I'm with you SeattleRain. I smoked and chewed for 15 years. Finally quit. Could not imagine doing it again. I think I would pass out. Thats not to say I don't crave it like crazy. Been clean of it for 1-2 years and I would love to take a puff. I chewed nic gum for like 3 years (small amounts - like three 2mg a day). I'm wondering if that had something to do with my acute illness. You are only suppose to chew that stuff for a few months.

That’s good information kitt. I’m trying to find the TEST ID on for this Alpha 3 acetylcholine antibody test on the Mayo’s website. I can’t find it. I want to see if it was part of my paraneoplatic panel. I don’t think it was. If it wasn’t – I am definitely going to ask my doctor to have it run.

Miqual, I have the N-type antibody. It’s been verified twice at the Mayo Clinic lab. As my doctor has told me and as my research on the internet confirms – this calcium channel antibody has a strong association with Lambert Eaton disease. Usually (95%) of LEMS patients test positive for the P/Q antibody – but the N-type can show up in up to 50% of patients. The AB attack the calcium channel at the muscle and nerve junction (Channalopathy) reducing the Ach to the muscle. 50% of LEMS patients either have or will develop cancer – specifically Small Cell Lung Cancer (90%). The other 50% is autoimmune in nature. My doctor told me regardless that he believes mine to be autoimmune in nature – I have to get screened for cancer (CT/PET) every 6 months for the next two years as a precaution. While I do have weakness (the primary symptom of LEMS) I do not share all the other autonomic symptoms associated with LEMS (dry mouth, erectile dys, double vision, droopy eyes, difficulty swallowing) Also LEMS usually shows up on an EMG. I’ve had 4 EMG and they were all normal. POTS/ SFN are not symptoms of LEMS. My POTS doctor told me he does not believe this N-type AB is the cause of my POTS or small fiber neuropathy or feet/legs body pain. He believes some other AB is the cause of which he does not know. The key thing I took away from this was the medicine used to treat LEMS. It’s called 3,4 DAP. 3,4 DAP is only available through clinical trials. My doctor was able to obtain it for me (after a 6 month wait…approval through FDA). I take it in conjunction with my Mesiton. It supposed to improve strength by expanding the calcium channels. It does help me.

I tested postitived for Calcium Channel AB N-type from the Mayo Clinic last year! I'll private message you.

I cannot get over the high price tag on ivig. My first month’s treatment was 35k. The second month’s treatment was 33k. The insurance company at first didn’t pay for it. I called them and told them I didn’t realize it was so expensive. They agreed to pay for it but could not guarantee that the remaining 4 months will be paid for. Needless to say I stopped the treatment. I’m not going to be on the hook for 100k+. I’m not bed ridden or incapacitated. For that kind of money I would expect to be superman and fly.

My doctor prescribed me Lyrica for my feet/leg/body pain. It helps about 30%.

The consensus from every neuro I have seen (Ive seen like 20 doctors) was that a viral infection caused my autoimmune disorder and POTS. They are basing this on - Two years ago when I got sick my liver enzymes went through the roof for a month then return to normal. Since then neuropathy, Lambert Eaton disease and POTS. No one else in my family has an autoimmune or neuropathy problem.

Hey Arizongirl. In my blood work- I have had this done twice. - IEP INTERPRETATION Both times (urine and Serum) the results say - Serum immunofixation fails to show monoclonal IgG, IgA, IgM, kappa light chains, or lambda light chains. So, what does that mean? Does it mean my immune system is ok?

Katybug is right. Each doctor has his own specialty. I saw one of their top neurologists. He even did a spinal tap on me. He could find nothing wrong with me. He told me there was nothing more he could do for me. (Btw I suffer from complete body pain, POTS , weakness and SFN.) So when I continued to find another neurologist in my local area to help me, they all wrote me off. They said Dr. X from John Hopkins was the best and if he couldn’t find anything wrong with me they weren’t even going to try. So I had to travel 4 hours away and find my current neurologist who didn’t write me off… and he clinically diagnosed me with POTS, SFN and located a paraneoplastic antibody in me (which I had confirmed with a 2nd test from a different doctor). I don’t think I’m not done with finding exactly what’s wrong with me but I’m sure in a much better place. It seems when one expert writes you off, they all write you off. It was very disheartening and a very tuff time in my life.

Im sorry if this is a repost question, but does anyone have an extensive list of antibodies that should be checked for autoimmune POTS/SFN?

I’ve been clinically diagnosed with POTS and SFN. I am desperately looking for some relief from the SFN. Have any of you tried Amitriptyline? Any success from it?

Ramakenstesh - could you post a link to that Mayo Clinic "new" autoantibodies?

My doctor identified my antibody by running the Mayo Clinics paraneoplastic panel. He just ordered it ....send away.... and in 30 days I had a dx (autoimmune disease). I imagine your local Neuro wouldn't even know about the panel. My doctor was a Neuro POTS specialist. http://www.mayomedicallaboratories.com/test-catalog/Overview/83380