Anyone Have An Autoimmune Disoder With Pots?

[mjan]

My new neuro that I have only seen 1 time did confirm I have an autonomic problem..from reading my medical reports and history..and listening to me telll him all that I have been through..that felt good to hear someone agree with me.

I just went through the autonomic testing to measure whats going on. Awaiting the results and a call from him.

BUT.. he did mention that often an autoimmune disease accompanies autonomic ones. Just wondering if folks here think its true?

What kinds do you have? HE thinks I have Sjogrens..due to my severe dry eyes..ears and mouth. I HAD that DX one time from a Rheumy but the next took it away. They thought I had MS.. ruled out. He also thinks my autonomic episodes end up with a NARCOLEPSY..with cataplexy. ITs not the drop t othe floor kind..its a slower version..where I end up looking unresponsive but I can still hear. He still has to finish the testing for that.

So..what do you guys know?

Thanks..Jan

[all4family]

I have the antibodies to the ganglia that are called ACHR.neurol.gangl.AB, as most of you have probably heard me mention before. When she tested me she said they are antibodies that are related to cancer, and cancer cells. Because of this I (ignorantly) kind of didn't pay close attention to the rest as I didn't think it would come out positive. When I was told it was positive she said I would need to see a neurologist because it is a autoimmune neurological disease. Which part is autoimmune I don't know. I assume just having the antibodies makes it autoimmune. Until I came on here I thought all dysautonomia was considered autoimmune. I am right now very interested in finding out more about this link between autoimmune, and the pots. Whether it means there is an additional autoimmune component, or if the pots in itself can be autoimmune. I had heard somewhere that people can recover from this in 5 years from the onset. That was my plan. Well I would be interested to learn more also. I am planning on presenting the neuro with a list of questions, and this will be several of them. like why the antibodies, and what do they mean to me.

Suzy

[firewatcher]

I've got anti-thyroglobulin anti-bodies. I was hypo-thyroid after #2 was born, but everything tests OK right now. Endos #2 and #3 say that I will probably progress to Hashimoto's thyroiditis. My PCP thinks my Diabetes Insipidus might be auto-immune as well.

[jump]

There was another thread about this earlier, if you search for it you may find more information....

I have autoimmune thyroid disease and celiac (which is autoimmune), and at the moment I have pre-diabetes (diabetes is an autoimmune disorder as well) but that is most likely related to my thyroid being poorly managed, as opposed to my body attacking the insulin or whatever happens in "real" diabetes (I forget).

There are four autoimmune disorders that are "linked" on the same gene: hashimoto's and grave's thyroid diseases, celiac disease/gluten intolerance, rheumatoid arthritis, and type I diabetes. There are a lot of people here who seem to have autoimmune disorders on this spectrum.

[mancmm19]

Hi!

I just wanted to share that I have been sick for 2 and a half years now after I thought I was perfectly healthy. I had my first "episode" in October of 2006 and about a year into being sick, (Sept. 2007) I thought that I finally had my answer when I tested positive 3 times for Lyme Disease. However, after being on anti-biotics for a year and 3 months and seeing little-to-no improvement, I came off of the anti-biotics this past December. I was finally diagnosed with POTS 2 weeks ago and have been having a very hard time determining if there is any correlation between the 2. My Lyme tests still come back positive so i don't know whether I need to go back on the meds or if it's POTS causing all of my symptoms. It's also been difficult trying to figure out if I do have Lyme, whether it caused the POTS. If anyone has any feedback, please let me know. However, my reason for commenting on this forum is that the more I read about POTS, the more I see that it is commonly caused by an illness or disease so I would assume that it can be brought on by an Autoimmune disorder, such as Lyme in my case.

[green]

Hey,

For those of you who know that you have autoimmune problems, that you have elevated levels of a certain antibody, etc. How did you find out? Are there specialty labs for dysautonomia that include autoimmune testing as part of their standard approach to diagnosing dysautonomia?

Furthermore, once you found out you had an autoimmune condition, could you do anything about it? Immunosuppressants?

I have narcolepsy and asthma and I guess I've pre-diagnosed myself as having dysautonomia that is autoimmune in origin and I want to prove it and do something about it (do something other than eat an "anti-inflammatory diet" )

Hi!

I just wanted to share that I have been sick for 2 and a half years now after I thought I was perfectly healthy. I had my first "episode" in October of 2006 and about a year into being sick, (Sept. 2007) I thought that I finally had my answer when I tested positive 3 times for Lyme Disease. However, after being on anti-biotics for a year and 3 months and seeing little-to-no improvement, I came off of the anti-biotics this past December. I was finally diagnosed with POTS 2 weeks ago and have been having a very hard time determining if there is any correlation between the 2. My Lyme tests still come back positive so i don't know whether I need to go back on the meds or if it's POTS causing all of my symptoms. It's also been difficult trying to figure out if I do have Lyme, whether it caused the POTS. If anyone has any feedback, please let me know. However, my reason for commenting on this forum is that the more I read about POTS, the more I see that it is commonly caused by an illness or disease so I would assume that it can be brought on by an Autoimmune disorder, such as Lyme in my case.

[all4family]

Hi Green,

I had a test called ACHR.neurl.gangl.AB. I don't think this is a real common test, it is part of a paraneoplastic screen. It shows antibodies to the ganglia, or in the ganglia, I really don't know. The reason for the antibodies CAN be many different things. When the doctor first told me I was positive she said it was a neurological autoimmune disease. I had this test before I had the TTT. The bad part about this test is that paraneoplastic syndrome is a syndrome caused by cancer cells, and tumors. BUT you can have a positive test for this if you just have POTS, and no cancer. I had it done at the Mayo clinic. I am not sure who else does it, and do not know how you would go about getting tested for it. I never would have been diagnosed with POTS if I hadn't had this test.

Suzy

[Lizzegrl]

I have some sort of autoimmune disorder, but they can't really put a name to it. I have severe allergic asthma and allergic reactions which are getting out of control. I am actually wondering if it might be a mast cell thing and will probably discuss it more with Dr. Grubb next time I see him or Beverly. When we discussed the POTS diagnosis he made reference to how I reacted with flushing, hot flashes, skin issues, rashes... I am wondering if he was talking about a mast cell disorder along with the pots.It was all so overwhelming. Is the mast cell thing considered an immune disorder? It looks like there are several of us trying to feel our way through this maze.

The docs say my immune system is hypersensitive to soo much it can't handle even a little extra irritant. I have had gamma globulin, in the past which helped a great deal to get past the big hurdles. Next week, I'll be starting on Xolair to see if that will help control the reactions. My pulmonary doc says that his bag of steroid tricks in running empty and my body is not handling the reactions as well as it used to, so Xolair is the next step unless I want to get regularly intubated with the reactions. Which I do not.

Here is an aside question: Dr. Grubb said I even looked like a hyperadrenergic Pots patient. He confirmed the diagnosis with tests, but it made me curious what was the "look: or visual cues that would indicate the Hyperadrenal variant.

[green]

Here is an aside question: Dr. Grubb said I even looked like a hyperadrenergic Pots patient. He confirmed the diagnosis with tests, but it made me curious what was the "look: or visual cues that would indicate the Hyperadrenal variant.

I think they have pale clamy skin.

[Desperate Mom]

My daughter tested positive for lyme 2 years ago and was given the standard 30 day treatment. She never got better. She then tested negative, but was given another 30 day treatment. Then a few months ago she tested positive and was put on minocycline. She also was told she has POTS and chronic fatigue syndrome. I think there is definitely a relationship between this. I read where alot of POTS patients initially had an infection and they never seemed to recover. She was diagnosed with epstein bar virus throughout all of this. She has not gotten any better. We just took her off the minocyline to see if there is any change in her symptoms, but nothing so far. She initially got sick three years ago from a bad kidney infection which left scaring on her kidney. It was after that that everything to seemed to go downhill. Did you ever notice a rash after being bitten, and if so how long afterwards did you start treatment. I have heard from the lyme disease foundation that sometimes more than one antiobiotic should be given and sometimes for quite a long time, especially if treatment didn't start right after being infected. My daughter didn't start treatment for lyme until nearly 8 months after noticing the rash on her arm. Some doctors have told me that you can have a fasle positive lyme test if you have other infections, such as epstein bar virus, and other doctors have said you can test negative and still have it. It is just as confusing as POTS. Have you looked up the lyme disease foundation on the web. They have alot of good information also. Hope I was of some help.

[cbahagrl1234]

I there I was DX with Ulcerative Colitis in 2002ish, then DX with POTS and tachycardia... At one time ,the dr.'s also thought I had fibromalygia or Rheumatoid Arthritis.. so YESSS

[morgan617]

Yes I do, but I suggest you look up Periodic Paralysis. I am on another forum for this disease and so many symptoms over lap. I think there are a fair amount of people on here where they have one thing that overlaps another and that throws the doctors way off. They tested me for narcolepsy too, but I have a huge problem with the way potassium works in my muscles, so it's like a slow motion cataplexy. To them. Please just google PP and see if that doesn't fit with your symptoms before you spend a whole lot of money, only to be told you are "normal" except for being crazy. Good luck, morgan

[Lizzegrl]

I think they have pale clamy skin.

That is certainly my look..lol

pale as the moon

[Poohbear]

There are many suspected causes for POTS and there is a theory that some people do have an autoimmune disease as the root cause. There is at least one facility getting ready to undertake a research study on this (if they haven't already recently started) to look for the antibody potentially responsible. To date, in most cases, even when the POTS is suspected to have an autoimmune root cause the antibody responsible is unknown.

There has been some talk about trying IVIG treatment but the GENERAL agreement among most of the specialists at this point is that it's too risky. If they know what antibody to target then IVIG therapy might become a more promising option but without knowing what antibody to target it's not been very successful in most cases.

There was also discussion in the past about plasmapharesis but again---the risk was too big, hypovolemia could be a severe issue in patients like us so most physicians agree that this too is an option that would be too dangerous with the knowledge that is currently known.

It is also true that if a person has one autoimmune disease they are much more likey to have several autoimmune dysfunctions/disorders. It doesn't surprise me to hear people say they have multiple autoimmune problems.

[jjb]

He also thinks my autonomic episodes end up with a NARCOLEPSY..with cataplexy. ITs not the drop t othe floor kind..its a slower version..where I end up looking unresponsive but I can still hear. He still has to finish the testing for that.

So..what do you guys know?

Thanks..Jan

I am SOOOOO interested in this.

My daughter has similar episodes, like you say, the slow type but we are trying to figure out what is autonomic dysfunction, what is autonomic seizure and what may possibly be cataplexy.

I think you and I may have connected once last summer on another forum about this topic, no?

We will be seeing an autonomic neuro next month. I am hoping he can help us to sort out what is what.

[mjan]

He also thinks my autonomic episodes end up with a NARCOLEPSY..with cataplexy. ITs not the drop t othe floor kind..its a slower version..where I end up looking unresponsive but I can still hear. He still has to finish the testing for that.

So..what do you guys know?

Thanks..Jan

I am SOOOOO interested in this.

My daughter has similar episodes, like you say, the slow type but we are trying to figure out what is autonomic dysfunction, what is autonomic seizure and what may possibly be cataplexy.

I think you and I may have connected once last summer on another forum about this topic, no?

We will be seeing an autonomic neuro next month. I am hoping he can help us to sort out what is what.

Hi..why dont you PM me and we can discuss this further. Unlike the typical narcolepsy with cataplexy..my episodes always always come on with autonomic symptoms first. With my emgerncy beta blocker dose..it helps me get to that point of cataplexy. I also have "micro sleep" they think. Its my biggest concern.. I seem to have absence seizures but they are not seizures. I can be talking and such ..but my brain shuts down for a second or two...up to more to catch up on needed sleep..only I do not know it..make errors..and then have NO memory of what I did.

Jan

[mjan]

CORRECTION: When I take my extra Beta blocker..I can prevent going into cataplexy..but still end up so weak..barely able to move.