Dysautonomia caused by autoimmune disease? HELP!

Hello! I was excited to find out that there is a dysautonomia forum out there! Isn't it great that we can be connected with other people experiencing the same unusual symptoms?

I haven't been formally dx'ed with dysautonomia. I'm 29 years old, and was perfectly healthy until recently! I am thin, don't smoke, and don't take any medications. But for the last 5 months I've been having daily symptoms related to the nervous system. It started about 2 years ago with some tingling in a patch on my back that would come and go, then I had a major "episode" while pregnant with my daughter last year. Out of the blue I suddenly lost my ability to understand and produce speech, felt confused, forgot words, and had the oddest sensations in my body like something was pressing down on me. I got tingling in my arm, both legs, and one side of my face and scalp. My vision was a bit blurry in one eye and I got very weak. I recovered completely after about 3 hours. My doctor ordered an MRI, EKG, and heart doppler, which were all normal so she decided that it was a silent migraine.

I began occasionally having heart palpitations (with no obvious trigger) that would resolve once I coughed. I started getting brief bouts of vertigo and nausea. Then I had a week-long migraine (headache, tingling, vision problems). Swollen hands and feet followed for a few days along with a burning sensation in the backs of my hands. Then in November of 2010 I had an episode where I suddenly became very cold and couldn't stop shivering. My hand and arm went numb and tingly, followed by both legs, one side of my face, my lower lip, and tongue. I felt weak and I kept needing to have bowel movements (at least 5 times within a couple hours) and had a sensation like I needed to pee over and over again as well, though I didn't. I had this weird feeling of something pressing down on me though I was also lightheaded. It's hard to describe. We went to the ER eventually and were given a referral to a neurologist. I recovered after about 4 hours so I thought it had possibly been another silent migraine. But the same thing happened again the next day. These episodes occur about 3 times a month now, but I have other symptoms daily.

I get swollen hands and feet in the morning sometimes, occasional joint pain in my hands/wrists, discomfort and cracking in my neck, heartburn and excessive burping, clenching of my muscles (without trying), sudden flushing or feeling very hot, sudden feelings of cold, muscle pain in my thighs, pressure around my cheekbone and teeth along with tingling (one side only), one-sided headaches, vision changes, etc. I also have polyneuropathy in my feet/legs with lessened vibration and temperature sense and this is beginning in my hands/arms as well. I have "severe vasomotor dysfunction" in my hands and feet which results in them becoming very cold and blue and numb for hours at a time sometimes. Lately I sometimes feel like I can't breathe adequately (not wheezing or short of breath exactly - hard to describe).

I have had a normal MRI (brain, spine) and EEG. My bloodwork showed a positive ANA (1:640 speckled) but no other specific antibodies so we don't know which autoimmune disease might be present. I also had low iron and high blood sugar (getting evaluated for diabetes on Monday). The vascular studies were abnormal, of course. I am starting to take a calcium channel blocker for the blood vessel spasms.

The neurologist thought I was getting silent migraines (acephalgic). The rheumatologist thinks I have some sort of connective tissue disease and that possibly my "attacks" (with the dizziness, cold, shaking, weakness, excessive bowel movements, etc.) could mean that my parasympathetic nervous system becomes overactive sometimes. He doesn't know why, of course. I have been to the ER a couple times since this all started and been told "I don't know" by one doctor and "probably anxiety disorder" by another.

My question is, does any of this sound familiar to you guys?! I would love to talk to anyone who has had similar symptoms, as well as hear from anyone who has dysautonomia related to autoimmune disease. Or just hear your ideas about causes and treatment for this type of dysfunction.

Thanks!

[buddysmom1]

I recently went too Vanderbilt and they tested me for autoimmune dysautonomia there is a blood test for this that you can request from your Dr. Mine came back negitive, but I did have a neurologist that wanted to put me on IVIG and Vanderbilt said absolutly not, unless you test positive for autoimmune dysautonomia I suffer like you with various complaints the worse being some sort of tremors in my head, I don't know if its a varient of a headache but I have had no relief from any of the Doctors I have been too for this I get tremors in my feet and hands, and the cold feet I can relate too, but find out about getting the blood test for autoimmune dysautonomia. From what I understand this type of dysautonomia is very rare.

[kluesy]

I went to Vanderbilt where they diagnosed me with hyperadrenergic POTS.  I am having trouble finding any drug I can tolerate.  Did you have any continuing correspondance with VAnderbilt or did they just diagnose you.  I have sent messages to them but they do not respond.
How was your experience there?

[buddysmom1]

They are no help I traveled far away too see them and they told me nothing. They do not know what form of pots I have but said they think its pots/iST I asked about hyperadrenergic pots but the DR I saw said since I did not show those symptoms during the autonomic testing it was not that at this time, but I disagree with that as in the beginning I was showing all of those symptoms and even now my BP goes up when I stand not down. And like you they have not responded to my questions on one of my test results I asked them about and that was three weeks ago and I e mailed them twice so go figure. Which Dr did you see I  know someone else that went there and also was not happy maybe their Dr's have changed who knows. And what meds are u currently on?

[kluesy]

I drove 5 hours, spent 2 nights and 3 days there.  They did diagnose me with hyper-pots and recommended I try aldomet(methyl-dopa) to block the adrenaline, but it totally flattened me even in small dosages. (mentally and physically).  My neurologist is having me try a small amount of Mestinon and it seems to help increase my muscle strength but only lasts 4 hours.  It also at first caused my asthma to kick in.....I use my inhaler now first, then take it and it does ok.  I tried to ask if the dr at Vanderbilt thought this was a good thing to do...but that has been 3 weeks ago and no response.
Vanderbilt did recommend I use compression hose (ankle to waist) and increase my salt and water which I did and it has helped the most.  If I have the hose on and drink gatorade all day I am able to stay upright much longer without the flushing, rapid heartbeat, chest pain, shaking and running to the bathroom to urinate that used to happen when I tried to be upright and walk very far.

I know they are very busy, but I think I will call the office tomorrow.  I really had high hopes since they are one of the places that is producing cutting edge of research on POTS.

[kluesy]

My neurologist also told me the Mestinon might help is the cause of POTS is autoimmune in nature, which I think in my case it is.   20 years ago I had a very positive AnA and was diagnosed with Mixed Connective Tissue Disease.  It went into remission after 3 years and my ANA is now negative, but I have very high anti-thyroid antibodies now.  (Hashimoto's)

And the real tell is the fact that when I receive a steriod shot it is like I am almost cured for about 2 1/2 wks, then it starts to go back to the way it was.

But steriod shots have BAD side effects long term.

I also have Addison's (adrenal failure)and take hydrocortisone to replace.  I for some unknown reason require much more than most. (35-40mg a day).  I think it is because I have an autoimmune issue going on,too.

What kind of blood test is it to test for autoimmune pots?

[Zoe5710]

There is an antibody that can be found for autoimmune dysautonomia, but I can't remember which it is at the moment. I'll look it up and get back to you. I haven't been tested for it yet.

I'm curious to hear about your MCTD that went into remission. Did that happen with steroid treatments? I'm not on any medications yet except for a calcium channel blocker for Raynaud's. My ANA was 1:640 speckled.

I am hesitant to start using steroids too because of the long-term effects. I have heard many people call them a "magic poison" because they do work so well yet are dangerous in their own right.

Several people in my family have Hashimoto's. I've heard that while specific AI diseases don't get passed to relatives (e.g. I shouldn't worry too much about my children developing lupus if that's what I have), they happen in clusters in families. My aunt and cousins have Hashimoto's. My grandmother had RA.

I will check on that blood test.

Zoe

[buddysmom1]

I am surprised that they did not test you while you were there it is called an Antinictine Ganglionic test that is what they tested me for as my Dr wanted to start me on IVIG and the neruologist there said absolutly not unless I have this test done, unlike you I have not had any positive ANA's or anything like that in the beginning of this disease I had very high SED rates and C reactive proteins showing i had severe inflammation at the time now I test normal . At least you have some sort of clue as too what you have I do not I feel like I am in Limbo the only thing is that when I first got this I had very high BP's and High Heart rates and was tested at NIH for a Pheochromocytoma which mimics hyperadnergic pots now I am more stable on my feet I am not increasing my fluid intake that much b/c I was peeing too much did you look at Dr. Grubb's web sit for H pots and his recommdations he actually does not recommend fluid overload or increased salt. I have been on a clonodine patch just .1mg changed weekly that has helped me a lot maybe you can ask about that let me know ok take care

[kluesy]

My MCTD started after an exposure to pesticides by a cropduster 23 years ago.  I was a rural mail sub and was eating my lunch in the car going between two cornfields when I was blasted by this cropduster.  I had to turn on my windshield wipers it was so bad.  I had my windows down and kept on eating cause I had no idea that could make me sick.

By the end of the route I had such a bad headache I could hardly see.  My neck was burning and in the following weeks kept the headache and had neurological weakness in my eyes and legs and arms.  I never worked another day at the post office.  I quit cause I could not see straight to drive for over 6 wks.   Three months later terrible joint pain started along with the headaches.  That was when I had the positive ANA (I believe mine got 1:640).  They sent me along to a rhemotologist that told me I had MCTD.  I could not tolerate prednisone, but took lots of asperin and just had lots of pain and weakness for three years, then it went into remission.  Immediately after my ANA went to normal I started having swellings in the corners of my eyes that would last 2-3 days.  That continues.  I take zyrtec and benadryl to control them most of the time.  I really wonder if I have the mast cell activation disorder that goes along with POTS due to the red flushing and swellings that I have.  Vanderbilt did not test me for that.

My mother had autoimmune temporal arteritis when she was in her 60's and asthma runs in my family, but other than that, no one else in my family has adrenal & thyroid failure along with the POTS.  I often think it was the environmental exposure of the pesticides that triggered my immune problems.

Kluesy

[kluesy]

Thanks for the info.  The problem at Vanderbilt might be that I saw a cardiologist, not a neurologist.  The fact that steriods help me so much is a real good indicator that my problems stim from autoimmune.  

[TRM210]

There is a great neurologist who specializes in dysautonomia:  Dr. Jeffery Tramonte at Scott and White University Medical Center in Georgetown, Texas, just outside Austin, Texas.  He is brilliant and very kind and very compassionate.  There are many forms of dysautonomia and 30% do not show positive for antibodies.  I was diagnosed with a rare form called "autoimmune autonomic dysautonomia".  Dr. Tramonte has helped me tremendously.  If you can afford to get to him, you won't regret it. (Research him and the hospital on the Internet.

[TRM210]

There is a great neurologist who specializes in dysautonomia:  Dr. Jeffery Tramonte at Scott and White University Medical Center in Georgetown, Texas, just outside Austin, Texas.  He is brilliant and very kind and very compassionate.  There are many forms of dysautonomia and 30% do not show positive for antibodies.  I was diagnosed with a rare form called "autoimmune autonomic dysautonomia".  Dr. Tramonte has helped me tremendously.  If you can afford to get to him, you won't regret it. (Research him and the hospital on the Internet.

[TRM210]

Correction:  my diagnosis is "autoimmune autonomic gangliopathy" which is a form of dysautonomia.

[Zoe5710]

Just wanted to update in case this is useful to anyone... I was diagnosed recently with scleroderma, which is an autoimmune disease. It causes tightening and scarring of the connective tissues in the body, including the skin and within some internal organs. It can cause neuropathy (including dysautonomia) thought this isn't a very common manifestation. When it occurs it is usually caused by vasculitis (inflammation and/or hardening of blood vessels) supplying blood to the nerves. It is a difficult disease to treat and can be life-threatening.

There are blood tests that can be done to check for the antibodies related to scleroderma. I suggest that everyone with dysautonomia get an ANA test at the very least.

Zoe

[kluesy]

Do you take steriods for treatment for autoimmune autonomic gangliopathy?

When I get a steriod shot I feel so much better.

How did they diagnose you with this?  What tests were positive?
Thanks for your help!

[kluesy]

My antibodies all come back ok for scleroderma, my ANA is now neg (was very high 20 years ago).  

Hopefully now that they know about the scleroderma they can help you.  

Is steriods the therapy for that too?

[Heiferly]

Is this your doctor?  I don't see anything related to dysautonomia here, but maybe this is someone else or he has more than one specialty?

http://www.ncbi.nlm.nih.gov/pubmed?term=jeffrey%20tramonte

At any rate, it does sound like he really knows his stuff.  AAG is not an easy diagnosis to make because a lot of doctors aren't even aware of it.  Well, to be honest (as we see around here quite often), a lot of doctors aren't aware of dysautonomia at all let alone the specific subtypes of it.  I'm so glad you found a doctor who can help you!!  Do you know what his board certification is in?  I want to guess neuromuscular, but I think that's a personal bias because for some reason that's where I've been having the most luck lately.

AHA!!  I finally managed to track him down on the hospital site ... I hate how when you just search a doc's name/location nowadays the top hits on google are always 50 different "doctor rating" sites that don't give much useful info at all and just clog up the search results!  He IS a neuromuscular guy (or at least that's what he did his fellowship in) and seems to have the same general scope of specialties as the doctor I've had luck with lately!  Go figure!  If anyone else wants to check him out, here's his hospital bio page:

http://www.sw.org/Dr-Jeffrey-J-Tramonte

Basically it looks like he has a focus in neuropathies (including autonomic) and various neuromuscular conditions.  We definitely need more doctors in that area of the country who can diagnose and treat autonomic, so this is great news for our community.

[AgnesP]

Hi Zoe
I was resonably heathly before getting pregnant. As soon as i got pregnant i started getting joint inflammation and very low bp. I vomited for about 3 months and generally speaking had a hideous pregnancy, in the last trimester i developed labile high bp and was bedrested. After the c section i had a strange response-sweating and shaking for 2 days. Shortly after that i realised i couldnt walk due to chest pain. After about 2 weeks of prgressively worsening symptoms including vertigo, flushing, anxiety, nausea, massive hr, loss of memory, i was admitted and diagnosed with dysautonomia. That was about 16 months ago. Im just about to have the nicotinic, ganglionic AChR antibody testing. I know someone else who got dys through pregnancy and she likes to take mestinon. I tried it and hated it but might try it gain.

[kelligreen]

Yes, I think you hit the nail on the head. I have many of the same symtoms (symptoms) although my rheumatologist hasn't put a label on it. I live in a rural area when I was a teen and we were  crop-dusted regularly along with our garden, livestock, and water well. I have had some relief through cutting gluten out entirely. I don't know exactly why this helps - I tested negative for Celiac but it did help and it is worth a try. We all need to wake up to the reality that we are poisoning ourselves with pesticides. Chemicals that kill rodents, insects, weeds, mold and fungi also kill US! It should be obvious - humans are living organisms too.