Question About New Diagnoses...

[k&ajsmom]

So as i posted earlier last week, I've been diagnosed myasthenia gravis and sfn, pots.

I'm very confused....still

Myasthenia isn't associated with pots or sfn or dysfunction in any article i can find.

So does this i still don't have my cause of pots since the neuropathy is considered mild?

I feel like im back at ground zero in a way.yea i know one of the reasons i feel bad but not"the" reason ive had autonomic issues.

Any ideas i can discuss with the doctor? I'm at a loss and feeling quite hopeless with this new diagnosis. I don't wanna give up and have to keep fighting but am way over my head now. Thx

[Guest Hanice]

Well.. were you sick before you got pots? Have you done a brain MRI? Have you done a Metanephrines and Catecholemines test?

[k&ajsmom]

Hi hanice

Thank u for responding.

I have had none of those done actually. I was told initially i would have a MRI to rule out chiari, so hopefully that will be done. I will ask doctor about the other two.

I was diagnosed ncs with autonomic dysfunction as a child and had other ailments (Migrane, gerd etc) i adjusted over the years and"dealt" with the condition.it was bearable butlooking back, only because i altered my life greatly. Last year i became very I'll with automatic issues and fatigue as well as gi and pain issues.was diagnosed pots and now mg. Last year was def. the turning point. I feel there is something still missing. If mg doesn't cause automatic issues, why did they both flare at the exact same time??? The million dollar question i suppose...lol =/

[Guest Hanice]

You need to get a few tests done then before you worry. Worrying does us the opposite of good. I just cant believe you've had this (but mild-er) since you were a child and you still havent done these tests. Always remember to ask for all your documents including CD imaging and all because in this world we live in, we order tests and sometimes no one really takes their time to look at the thoroughly. I once went to a neuro where the tech told me he didnt actually look at the images, that he didnt know how to read them that that was the DOCTOR'S job. Then I asked the doctor if he had gone through my results and he said no, that he doesnt actually look at the images unless the tech tells him somethings wrong.... So what Im trying to get at is we live in a place where some people just dont care. It is pretty rare to find a good doctor, I hope you've found YOUR jem of a doctor! These tests are uber important to find the CAUSE of POTS. I hope you find your reason (and I hope its not a bad one) and I hope you feel much better soon. ♡Huggies♡

[HopeSprings]

I was curious what would happen on follow up. I thought there was some question over whether it might be LEMS or MG? Can the antibodies you tested positive for signify anything other that MG? Do you have MG symptoms? Were the antibody levels high enough to be considered very significant? What does the Dr. say?

[looneymom]

I would be asking what medication is used to treat MG. From what I have read this is an autoimmune disease and can make POTS worse. The cardiologist that treats my son was concerned that this might be his problem. My son's test came back negative. However, I might be investigating what medications are used because maybe it would help ease your POTS symptoms. It sounds like you have found a condition that may be causing the POTS to be worse. Do you think the MG could have been missed early on. I have read disease can start at any age. Have you had the blood test to confirm the MG? There is medication to treat MG. Don't give up! Just keep asking your doctor questions. You will find the answers, it just takes time.

[arizona girl]

I'm glad you found out what is wrong, sorry that it is MG. Now that you know though they have many ways they are treating it now. Is your neuro a specialist in autoimmune neurmuscular disease? They know better how to manage this. My neuro treats MG patients and I met a few of them at his infusion center.

I'm not surprised at all the you have sfn and autonomic dysfunction along with it. MG is autoimmune. They are finding more and more autoimmune diseases that attack the sfn's as part of the disease process. Most of the research has focused on large fiber and other reasons why mg or other autoimmune disease happens. The skin biopsy test has really only been being used for about 10-15 years. So, they really are only starting to diagnosis sfn and not as often as it exists. It is missed a lot still. If you have sfn there is usually a cause, but it is sometimes hard to find the reason.

I think you've found your reason. What are the treatment options your doctor is offering you? I think you will find that treating the MG, which may take some trial and error, will help to improve you autonomic symptoms. So far there are no cures for many of these autoimmune diseases, but as one of my doctors said they can be managed. I think she told me that, so I would be realistic about my prospects. It is hard when we don't have all the answers or a good treatment plan to not let it take our joy away. I've learned I'm not my disease and I refuse to let it rob me of the good stuff in life. Not that there are times when it is still a challenge.

Take care!

[Guest Hanice]

Hi hanice

Thank u for responding.

I have had none of those done actually. I was told initially i would have a MRI to rule out chiari, so hopefully that will be done. I will ask doctor about the other two.

I was diagnosed ncs with autonomic dysfunction as a child and had other ailments (Migrane, gerd etc) i adjusted over the years and"dealt" with the condition.it was bearable butlooking back, only because i altered my life greatly. Last year i became very I'll with automatic issues and fatigue as well as gi and pain issues.was diagnosed pots and now mg. Last year was def. the turning point. I feel there is something still missing. If mg doesn't cause automatic issues, why did they both flare at the exact same time??? The million dollar question i suppose...lol =/

I just read about mg and maybe that is why you have POTS.. It seams like it was bacterial? Im sure you have googled it already but keep looking up info on mg and find out what tests sound like they would help.

[Guest Alex]

Sarah,

is it possible that you're actually dealing with a case of autonomic peripheral neuropathy? This can occur in conjunction with a somatic neuropathy as well as in isolation. Also it's possible to have only sympathetic neuropathy or parasympathetic like LEMS, and LEMS is really similar to MG. I remember at one point your dr was evaluating you for LEMS and MG (or my memory is playing tricks on me), have you been diagnosed with MG?

Not sure though what your situation is and I don't want to speculate further.

You might want to take a look at the article below and see if it rings a bell for you in terms of symptoms. It can also help with tests you may want to ask your dr for as well as possible treatment options. (it's not too heavy on medical terminology, but not a light lecture either)

http://www.japi.org/september2006/U-727.pdf

Approach to a Case of Autonomic Peripheral Neuropathy

I hope this helps.

Best,

Alex

[HopeSprings]

My thought when the possible LEMS diagnosis was on the table was this could be the reason for the SFN (autonomic neuropathy=POTS symptoms), but I don't think they have found MG to be associated with SFN. However, as was suggested above maybe any autoimmune condition can affect small nerve fibers and they just haven't made that connection yet. What does Dr. Chemali say?

[k&ajsmom]

Sorry its taken so long to reply, had to work today and was exhausted...blah.

Anyways, hanice,i can't believe the lack of

communication with your doctor and tech! =o crazy, but yr totally right in the fact that we have to be our own advocate. =)

Naomi,

My achr ab was .04 ref less than.02

Striational was h 1<480 ref 1<60

According to the doctor that s pretty high and undeniable mg (possiable thymoma)

I haven't actually gone back for my follow up yet, but until my ct results are in it would be pointless.

I did however speak to them again and lems is still possiable but not as likely considering blood work indicates mg, but because of automatic issues wants to be certain there is no carcinoma. So just waiting and waiting now..sigh.

Looneymom,

Mestonin is being mentioned as a first line med for me assuming there is no cancer

[k&ajsmom]

Oops...wasn't done there. Lol

Anyways,

I can't find any article connecting mg and pots, but i guess off one things out of whack maybe it was just a dominoe effect.

Infusions of steroids are his second choice I believe fir mg. Yuck. =(

Arizona,

Hm, that makes sense to me. There is just so much we don't understand with autoimmune diseases. I wish they would find some missing links. Im reading Alot on it but not yet dove into sfn but it has to all fit somehow. I'll know more about treatment soon =p nervous...

Alex,

Wow! I'm printing that out to take to my follow up. The only thing is my titers were significant for mg so? I'm gonna be researching this some more.thanks for the lead.its def.something to discuss.

Naomi,

I can't find a connection either but its def a question for Dr.Chemali! I am symptomatic.i have breathing"heaviness". Mild swallowing issues and daily muscle exhaustion and fatigue.i just thought i was definitioned but couldnt figure out why i was so unable to pull myself out of it. I do get double vision mildly and tracking issues as wellbut no Ptosis.

Thank you all for the feed back and support and will keep you posted after i interrogate the poor Doctor soon! Lol take care

[k&ajsmom]

+deconditioned

[corina]

Hi k&ajsmom!

Although I'm not diagnosed with MG, I have been on mestinon in treating POTS, it helped me in keeping my temperature up. Sorry for your diagnosis, I hope you will find good treatment!

[HopeSprings]

Ugh, it's so frustrating when we get more clues, but they only lead to more questions and not definitive answers! We just need things to make sense. Hopefully the CT will be normal. And I hope the Dr. will have some insight for you. Let us know what he comes up with.

[Guest Alex]

I'm on mestinon as well without having MG though - I tested negative for it. It really does make a difference in my symptoms, particularly in my HR - not as big as I'd like though. I'm currently trying to gradually up my dose and see if it helps.

Sarah, when you say the AChR antibody, is it the nicotinic one or the ganglionic one? The one for MG is the nicotinic one. Also the striational muscle antibody is characteristic but not diagnostic of MG. 10-15 % cases of LEMS have that antibody. Have you also had the calcium channel antibody test? That is one antibody that it not found in MG or in people with a thymoma.

I think that article I shared with you might help your dr (if willing to read it) figure some things out.

Best of luck and keep us posted.

Alex

[k&ajsmom]

Thank you Corina for the encouragement. I am quite shocked that so many are on this med. Pleasantly though. =) maybe it will help both conditions for me!

Thx Naomi, sometimes i wish i didn't need to know and could just trust blindly. But we both know that could be a mess with our medical system.

Still waiting for results btw....=/