Autoimmune Form Of Pots And Paraneoplastic Syndrome/aag And Mestinon

[tgleiker]

Hi, All

I finally got into an appt at Stanford on Tuesday at their Autonomic Clinic and unfortunately it seems as though there aren't too many options as far as medications for me since I also have OH and taking Midodrine at the lowest dose brought my BP high enough and it didn't help. I couldn't take a higher dose because then it would bring my BP too high. I tried Propranolol at the lowest dose and it didn't really help my tachy and brought my BP too low, therefor couldn't increase the dose.

Dr. Miglis at Stanford believes my POTS since it started five days after I got my gallbladder removed, is caused by a festering small fiber neuropathy that was sent over the top/triggered by the surgery, but that doesn't make too much sense since the neuropathy I have didn't start until a couple months into it. Or, that it is caused by what he says is autoimmune form of POTs which probably seems more likely due to the sudden onset for me.

He put me on Mestinon to try which is used for the autoimmune form and it is the only med that is seeming to help somewhat so far. He also ordered a skin biopsy and a Paraneoplastic Blood Panel with AAG to help determine if it's one or the other that is in fact causing my symptoms in POTS.

Do any of you take Mestinon or have any knowledge of this potential form of POTS and what it means exactly being possibly linked to Paraneoplastic Syndrome or Autoimmune Autonomic Ganglionapthy? From what I've read so far it seems like it is linked to cancer and the possible treatment is iv immunoglobulins like a form of chemo.

Is this similar to what others have been tested for? I have fears around knowing whether my issues are stemming from this, and also around the alternative of not finding the answers for a cause to what I'm experiencing that all of a sudden changed my life.

~Tara

[looneymom]

Hi Tara

My son does not have AAG but had testing that showed high levels of basal ganglia antibodies. These antibodies are caused by strep infections. My son's POTS condition kept getting worse. To clear the body of any autoimmune antibodies, usually IVIG or Plasma exchange is used. My son tried ivig first but it made his symptoms worse and could not see any improvement. IVIG is used to boost the immune system but Plasma exchange will remove the bad and good antibodies. My son had to have many plasma exchange treatments to get his autoimmune antibodies out. After a year of treatment, he has made much progress.

If you have AAG, Plasma exchange or IVIG will help that condition. Another medication you might want to look into is Low Dose Naltrexone. It helps modulate the immune system and helps with chronic pain. This medication is used to treat many other autoimmune diseases.

If you have autoimmune antibodies, you will need some type of treatment to get them out, or something to boost your immune system to fight off the invasion. The stronger chemo drugs are used if cancer is involved. IVIG and Plasma Exchange are a much better alternative than chemo drugs.

Wish I could be of more help. My son was never tried on Mestion. If autoimmune antibodies are involved with your POTS condition, the quicker your doctor can figure this out, the quicker you can start treatment. My son's POTS condition just kept getting worse but stablized after several months of treatment. Hang in there and keep searching for your underlying cause. It does sound like you have a doctor that's willing to do that.

[Psalm 23]

Hi Tara,

I have a diagnosis of autoimmune autonomic neuropathy as well as a number of other things. I am positive for the n-type calcium channel binding antibody which is part of the paraneoplastic panel. When I first became positive for it there was a cancer concern and I had to go through a series of CT scans and gyn exams which were fortunately negative. That was18 months ago. The level has been retested three times and has remained abnormal but it is no longer being interpreted as a cancer indicator but an indicator for the presence of other antibodies adversely affecting my autonomic nervous system. The n-type paraneoplastic antibody is found in many patients that are diagnosed with AAN and are cancer free. I had meningitis a number of years ago with a very elevated protein level in the spinal fluid and it may likely have been the trigger for autoantibodies. It has taken a very long time to finally arrive at this diagnosis. In any event I was prescribed Mestinon for POTS back in 2011 and it has proven to be one of my best medications in terms of symptom control. In regards to the recent AAN diagnosis I was offered IV Methylprednisilone or IVIG.

I hope this information is helpful. I pray you find the answers you need.

Janet

[Guest ANCY]

HI Tarra,

I've also tried Mestinon and found it helpful in lessening symptoms however I had intolerable side effects and after about 3 months it also became less effective for me.

My neurologist believes I have an autoimmune cause for my dysautonomia because my onset followed an infection. I do have unspecified positive autoimmune blood work but dont remember the specific tests. My neurologist decided to go ahead and try treating me with IVIG even though he had not pinned down an exact autoimmune diagnosis, he mentioned it a year prior and after his diligent research decided to forge ahead.

The IVIG has been the most helpful treatment for me since my onset 4 years ago. I've gone from unable to sit up without passing out to recently being able to stand or walk for about 30 seconds before passing out, which I had not done in almost 2 years.

I hope you are able to figure out what works for you.

Wishing you all the best!