Autoimmune Autonomic Ganglionopathy - Anyone Else Out There??

[Babis]

Hi Hanna,

Is there any chance you could get IVIg? To me it seems the ideal treatment for AAG, since you do not become immunosupressed and, in your case, I think there is no risk to the fetus.

It was difficult for me to get IVIg covered in the US, but it has been much easier to get it covered in Germany (and other coutries with a social healthcare system).

I have tested positive for the acetylcholine ganglionic antibody. Dr. Grubb told me it confirmed his suspicion that my dysautonomia has an autoimmune cause. When I was diagnosed with rheumatoid arthritis, I was put on methotrexate and felt better than I have felt in years as far as orthostatic symptoms/fatigue goes. I had to stop the methotrexate because I wanted to get pregnant. My symptoms got much worse. I'm currently taking a low dose of prednisone, and just started sulfasalazine, which is used as an immune suppressant. I'm hoping the sulfasalazine works magic too. I probably won't know for a while, as it takes time to build up in the body.

Edited August 28, 2012 by corina
medical advice

[Friedbrain]

OMG, this is fascinating and so timely! Thank you so much for sharing, Cfmartin! I've been positive for SSB for a while now, but thought it was the least of my worries (I mean-dry eyes? I can deal with that much better than crashing so thought it was no big deal!). Gah! Because the profile described fits my initial crisis so perfectly! Down to the rapid onset, and including urinary retention and cranial nerve problems! In my case, I ended up in the ER with seizures (status epilepticus). Ironically, I've been on cortef since around then maybe because of an intial treatment (solumedrol in the hospital, maybe resulting in secondary adrenal insufficiency) which may have reduced autoimmune consequences over the past 9 ys......until I try weaning off (at which point the dizziness, cranial nerve dysfunction and sometimes achiness would resume). I reduced the cortef in March and was okay except for increase in urinary retention and some other mild-but-not-ER-worthy issues, which may support the need for immune suppressant. My new rheum suggested one (over the phone) but I can't get in to see her.

What's also interesting...I've been on a strict diet because I am carb-sensitive. Now, when I eat a normal meal, besides feeling tired from the food, I also end up going to bed feeling bloated. I thought it was because I don't eat much usually, but maybe I don't eat much because my GI tract is messed up! All catch-22 until I can find a doc to try treating the symtoms. I was annoyed with my newendo (who was a jerk in general, long story), who said that if I felt better eating tiny portions and restricted diet then yay me, keep it up (instead of appreciating that it's not normal to not be able to eat like a normal human being).

Btw, it would be great to get the name of the Cleveland Clinic doc, if possible. I drove there in order to see a good endo (because the local one was a jerk); I certainly would drive up there for a good doc who might be able to help with this!! Thanks!

Editted to add... just went to Cfmartin's blog and went to the CC link that has an interview with Dr. Jaeger.....wow, cool! He talks about the pulse pressure issue, cognitive problems.......me!

[Babis]

Hanna,

Could you update us on what happened? Did Sulfalazine work? Did you get pregnant?

Thanks,

Babis

I have tested positive for the acetylcholine ganglionic antibody. Dr. Grubb told me it confirmed his suspicion that my dysautonomia has an autoimmune cause. When I was diagnosed with rheumatoid arthritis, I was put on methotrexate and felt better than I have felt in years as far as orthostatic symptoms/fatigue goes. I had to stop the methotrexate because I wanted to get pregnant. My symptoms got much worse. I'm currently taking a low dose of prednisone, and just started sulfasalazine, which is used as an immune suppressant. I'm hoping the sulfasalazine works magic too. I probably won't know for a while, as it takes time to build up in the body.

[E Soskis]

Does anyone with AAG have experience with plasmapheresis? - I have been undergoing plasma exchanges for over 2 years now - about every 2-3 weeks. The treatments seem to not be as effective as they were at the beginning. I received IV immune globulin for about 2 years (once/ every week) before the plasmapheresis and it definitely quit working at the end of 2 years. Where do I go from here? Suggestions? Experiences?

[Guest mattgreen]

E Soskis - Can you try IVIG again?

[diabeticgonewild]

E Soskis,

I am sorry to hear about this. In several publications (journal articles) it says that plasmapheresis or IVIG alone, is often ineffective, in terms of long-term benefit. Basically, what the "experts" on AAG say is that the benefits of plasmapheresis or IVIG alone are often "transient".

Next time I go to my neurologist, I am going to pass by chemotherapy drugs, in addition to IVIG or plasmapheresis as a potential treatment, in hopes of increasing chances of remission.

When I was diagnosed with AAG in January 2012, I had five treatments, every other day, over two weeks of plasmapheresis. That did not work and I ended up in the hospital again. A month later, I was started on IVIG and I stayed on that for about a year, until the end of February 2013. I then switched to plasmapheresis, with the first five treatments, every other day, over two weeks. Now, I receive plasmapheresis every 3 weeks for two treatments each time. I have that order and treatment until mid-September, when I hope for the plasmsapheresis to end and I also hope to get my dialysis catheter out (I have poor access).

My neurologist said that after awhile, IVIG becomes ineffective and you have to switch to another treatment for six months, and then afterwards, you are fine from an IVIG standpoint. IVIG gives me terrible headaches. I have to basically lock myself in my COOL, DARK bedroom for two days. I also have to drink TONS of fluids to get rid of the headache. Also, the following week is minimally productive for me.

[Babis]

Well, it's been two years since I started IVIg (three years that I have had AAG), and I am afraid that, for me too, IVIg is not as effective anymore as it was initially. I receive IVIg every 8 weeks. It is still somewhat effective but, compared to the beginning, it takes longer (2 weeks) to feel the positive effects, and stops working earlier, 3-4 weeks before the next cycle. That leaves me with only 2-3 weeks that I feel "good" between cycles, and it is only half as "good" as I felt a year ago.

So, overall, I have started to get worse, or the IVIg is not as effective anymore. Moreover, I have now moved to the UK, and it is quite difficult to get IVIg here. I may have to seek alternative treatments, but immunosuppressants are highly carcinogenic, so I do not want to go there. The neurologist I saw in Greece warned me that Plasma exchange can have nasty autonomic side effects. I am afraid and not sure what to do...

I have done some research, reading many pubmed articles, regading substances that help with autoimmunity in general, without causing cancer. I also looked at myasthenia gravis in particular (its AChR antibodies are in some sense similar to those of AAG, though they target the neuro-muscular junction, rather than the neuron-neuron junction). It seems that vitamin D3, vitamin K2, and an antioxidant/mitochondrial cocktail (ubiquionol, alpha lipoic acid, vitamin B complex, vitamin E, glycocarnitine, selenium), can help reduce inflammation and autoimmunity in various ways (e.g. inhibiting interleukin-5, etc), if dosed properly. This cocktail has indeed helped me, and I get worse a week or two after I stop it. It is not a cure, but at least it does not cause cancer.

The literature said that AAG usually lasts 2-5 years, with slow but incomplete recovery, but it seems many people have it longer than that. I just feel exchausted and want to find a way to put AAG into remission...

Has anyone else taken immunosuppresants for AAG, and for how long? Did you have toxicity side effects, or develop cancer?

[E Soskis]

I'm about to be hospitalized in a few days for several procedures. First, I lost my central IV access (permcath) due to sepsis - I also lost my infusaport. So, the vascular MD is going to place a femoral/groin line for temporary plasmapheresis then a couple of days later, perform a "necklace" procedure. I am intimidated by this procedure. It seems quite invasive and disruptive to critical vasculature in the chest region. I'm growing weary battling the AAG. 2 years of IVIG and 3 years of plasmapheresis have worn me down. This seems to be just another insult to my body after a series of on-going insults: failed AV fistula creation with multiple attempts, permcath for plasmapheresis hanging off my shoulder for 3 years only to become infected and septic; increasing gastroparesis that will necessitate a feeding tube sooner rather than later; and now the re-arrangement of my chest vascular system to accommodate a graft that will tunnel under my skin like a "necklace" from shoulder to shoulder - I mean, when does it stop? - is this a forever torture sentence? - if AAG isn't likely to kill me, then all the treatments and attempts at treatment will. I shall visit the idea of an immunosuppressant with my neurologist while I am in the hospital - to me, it is just another "treatment" that promises to lead me down the path of further complications and incessant torture.

[RichGotsPots]

So happy I you posted on this older posting so I could find it. I have autonomic neuropathy which is actually what gangliopathy means in medical translation becaypuse the ganglia are the autonomic nerves so they got all fancy with calling it ganliopathy.

So first off everyone who has AAG or autoimmune Pots needs to get a baseline with either a QSART or Skin Biopsy so that they can retest their nerves to see if a particular treatment is working.

Next before and after every IVIG treatment or atleast the first few months. IgG levels need to be taken before and after via blood. Doesn't matter if they are low or high what matters is that after the IVIG treatment they go much much higher. If they don't go much higher then the amount of IVIG is not enough and a high dose is needed until there is a boost. This affects how well IVIG will work.

IVIG is usually tried first and if it doesn't work well or if you can't handle the side effects they do Plasma. I have never heard of autonomic problems caused by Plasma and I know a few AAG ppl on Plasma doing well. With Plasma the danger is blood clots when they take the blood out but they mix in anticlotting agentqs to minimize that greatly. With IVIG the treatments need to be done very slowly from 5-8 hours, you need to take tylenol, get IV saline before and after and take an allergy pill to minimize side effect symptoms.

Lastly, Mayo did a few case studies on AAG meds and said,"There is preliminary evidence that novel immunosuppressant agents such as Mycophenolate mofetil (MMF) and Rituximab may be effective in certain patients who are unresponsive to IVIG or PE." Also I read a cleveland clinic report for sarcoid which is autoimmune too that said once patience had autonomic neuropathy steroids stopped working and only IVIG helpped 66% of patients recover. So I believe that if you test with autonomic neuropathy then it gets to the point where it doesnt show up on a skin biopsy they these immunosuppressants can be affective.

private message me if you have questions

[diabeticgonewild]

Babis,

I just got done with my first cycle of chemotherapy, in the form of Cytoxan IV.

I probably vomited over 20 times over the course of three days, but the chemo wasn't that bad.

I am already starting to respond--I think.

E Soskis,

I would do whatever it takes to treat the AAG properly. YOU deserve to have a manageable disease. Syncope and near-syncope on a TTT, in combination with "recurrent arrhythmias" is eligible for SSI/SSDI, or Social Security Disability. Please consider this if immunosuppression will make you unable to work. Make sure your doctors write letters supporting the Blue Book impairments that you have, before you apply for disability.

From the Blue Book:

http://www.socialsecurity.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_05

4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).

3. How do we evaluate arrhythmias using 4.05?

a. We will use 4.05 when you have arrhythmias that are not fully controlled by medication, an implanted pacemaker, or an implanted cardiac defibrillator and you have uncontrolled recurrent episodes of syncope or near syncope. If your arrhythmias are controlled, we will evaluate your underlying heart disease using the appropriate listing. For other considerations when we evaluate arrhythmias in the presence of an implanted cardiac defibrillator, see 4.00F4.

b. We consider near syncope to be a period of altered consciousness, since syncope is a loss of consciousness or a faint. It is not merely a feeling of light-headedness, momentary weakness, or dizziness.

c. For purposes of 4.05, there must be a documented association between the syncope or near syncope and the recurrent arrhythmia. The recurrent arrhythmia, not some other cardiac or non-cardiac disorder, must be established as the cause of the associated symptom. This documentation of the association between the symptoms and the arrhythmia may come from the usual diagnostic methods, including Holter monitoring (also called ambulatory electrocardiography) and tilt-table testing with a concurrent ECG. Although an arrhythmia may be a coincidental finding on an ETT, we will not purchase an ETT to document the presence of a cardiac arrhythmia.

RichGotsPots,

I do not recommend any of these treatments, which includes IVIG, plasma exchange/plasmapheresis, and immunosuppressive agents. There is nothing enjoyable about these forms of treatment. All of them make people sick, one way or another and there are always serious consequences with all of the treatments.

For those of us with AAG, the benefits of treatment have often been "transient" and "partially helpful", giving us temporary functionality without control or manageability of our disease.

I would only recommend such treatments to people who are unable to work without major adjustments or unable to go to traditional school, due to highly probable autoimmune dysautonomia. If AAG or another readily identifiable form of autoimmune dysautonomia is not diagnosable via an antibody panel, I would be very reluctant to recommend such therapies. I am no medical professional, but I would imagine this would be determined after having the autoimmune dysautonomia panel performed, being seen by a neurologist who is a diplomat in the sub-specialty of autonomic disorders (only ~20-30 neurologists in the US have this certification), and having been seen by a immunologist who is familiar with dysautonomia or is studying autoimmune dysautonomia (there are doctors out there doing this). After this, if autoimmune dysautonomia is suspected, I would not be reluctant to recommend such treatments.

Keep in mind AAG is considered to be "severe dysautonomia".

[Babis]

Note that there is a huge difference in effects and side effects between different brands of IVIg. I had very different responses to Privigen, Octagram and Gamunex.

diabeticgonewild

My neurologist recommended against Plasma Exchange, as it depletes blood volume and causes hemodynamic instability and arrythmias, something that people with dysautonomia cannot tolerate. So I'm surprised you were under Plasma Exchange, I'm not surprised you didn't torelate it.

I'm also surprised you are receiving such a cytotoxic drug like Cytoxan. Do you have cancer? Cytoxan kills many kinds of cells and can cause infertility, among others. Ironically, although it is used for chemotherapy, it is itself carcinogenic.
Why not opt for a more specific drug that targets only B cells, such as Rituximab? This is what my neurologist recommended as the 'least evil' immunosupressant (it is also mildly toxic and carcinogenic, no immunosupressant isn't, but much less than cytoxan). There are a few articles out there documenting its efficacy for AAG, and you only need one cycle every six months.

Ideally, one would want an even more specific drug, that targets only the B cells that produce ganglionic antibody, but science is not there yet.

[looneymom]

Hi Babis,

How is Rituximab given? My son has just had some more autoimmune testing. My son tested negative for AAG but he is being checked for Paraneoplastic antibodies. My son has been seen by an immunologist and has a low IgA. So IVIG and plasma exchange may not be an option at this time. Our cardiologist has mentioned Rituximab as a possible alternate. Have you used this medication before and if so did you notice any side effects?

Rachel

[Babis]

Hi, looneymom.

I have not taken Rituximab yet. I have to apply for funding and it will take some time. And the side effects can be serious (cancer, JC Virus, etc). My neurologist suggested it is more dangerous than IVIg and PLEX, but less than Methotrexate, Cellcept and Cytoxan.

I want to try safer alternatives first. One thing I intend to try is LDN (Low Dose Naltrexone), which supposedly helps with autoimmune disease. I am suspicious about the claims but I do not have much to lose by trying LDN before toxic alternatives. I just got a prescription and will start in a few weeks, but do not expect results in less than a few months.

[Babis]

My neurologist said that after awhile, IVIG becomes ineffective and you have to switch to another treatment for six months, and then afterwards, you are fine from an IVIG standpoint. IVIG gives me terrible headaches. I have to basically lock myself in my COOL, DARK bedroom for two days. I also have to drink TONS of fluids to get rid of the headache. Also, the following week is minimally productive for me.

I got horrible headaches from Privigen (it has the highest headache incidence among all brands), but none from Octagram and Gamunex. And Gamunex seemed more effective, despite my neurologist thinking the contrary. Have you considered switching IVIg brands?

[diabeticgonewild]

Note that there is a huge difference in effects and side effects between different brands of IVIg. I had very different responses to Privigen, Octagram and Gamunex.

diabeticgonewild

My neurologist recommended against Plasma Exchange, as it depletes blood volume and causes hemodynamic instability and arrythmias, something that people with dysautonomia cannot tolerate. So I'm surprised you were under Plasma Exchange, I'm not surprised you didn't torelate it.

I'm also surprised you are receiving such a cytotoxic drug like Cytoxan. Do you have cancer? Cytoxan kills many kinds of cells and can cause infertility, among others. Ironically, although it is used for chemotherapy, it is itself carcinogenic.

Why not opt for a more specific drug that targets only B cells, such as Rituximab? This is what my neurologist recommended as the 'least evil' immunosupressant (it is also mildly toxic and carcinogenic, no immunosupressant isn't, but much less than cytoxan). There are a few articles out there documenting its efficacy for AAG, and you only need one cycle every six months.

Ideally, one would want an even more specific drug, that targets only the B cells that produce ganglionic antibody, but science is not there yet.

I do not have cancer, but the problem is that rituximab is not routinely covered by insurance for autoimmune diseases. My doctor said that patients with diseases like CIDP have a lot of trouble getting rituximab authorization through insurance, and so that was why Cytoxan was the initial choice.

[diabeticgonewild]

So first off everyone who has AAG or autoimmune Pots needs to get a baseline with either a QSART or Skin Biopsy so that they can retest their nerves to see if a particular treatment is working.

The antibody involved with AAG does not actually damage the nerve, so there would be no real benefit in doing a skin biopsy.

[RichGotsPots]

So first off everyone who has AAG or autoimmune Pots needs to get a baseline with either a QSART or Skin Biopsy so that they can retest their nerves to see if a particular treatment is working.

The antibody involved with AAG does not actually damage the nerve, so there would be no real benefit in doing a skin biopsy.

In my opinion the G in AAG stands for Gangliopathy. Ganglia are the autonomic nerves and Pathy refers to the damage. Just like Neuropathy. So Gangliopathy refers to autonomic nerve damage. Also when autoantibodies are high enough to detect they are causing damage, that is not just the case in AAG but that is true for all autoimmune disease. In AAG the autoantibodies that have been found so far attack and damage the cholinergic synapse which is connection btwn pre and post ganglion nerves.

My comments about AAG treatment were directed towards AAG treatment alone hence my reference to only AAG so I am not sure I understand, since by the end you say if autoimmune dysautonomia is suspected you would not be reluctant to recommend such treatments.

The other day a Dr. at Mayo said that 33% of AAG patients who got IVIG got much better after. That is about half of the positive results then for other autoimmune attacking illnesses like Vasculitis and CIDP.

In regards to Cyclophosphamide (chemo med used in autoimmune disease), I can't speak of any published studies of it's success in treating AAG, but in researching other autoimmune nerve damaging illness there are some studies I can mention. For example in some forms of vasculitis they treat it with a double punch of both Cyclo and high dose prednisone at the same time with about 75% success rate. They also just completed million dollar trial where Rituximab and high dose prednisone proved to be as effective with slightly less and or different side effects.

[looneymom]

Hey Rich,

Just wondering if you were able to get IVIG treatment yet?

Rachel

[diabeticgonewild]

Quote from RichGotsPots

________________________________

In my opinion the G in AAG stands for Gangliopathy. Ganglia are the autonomic nerves and Pathy refers to the damage. Just like Neuropathy. So Gangliopathy refers to autonomic nerve damage. Also when autoantibodies are high enough to detect they are causing damage, that is not just the case in AAG but that is true for all autoimmune disease. In AAG the autoantibodies that have been found so far attack and damage the cholinergic synapse which is connection btwn pre and post ganglion nerves.

My comments about AAG treatment were directed towards AAG treatment alone hence my reference to only AAG so I am not sure I understand, since by the end you say if autoimmune dysautonomia is suspected you would not be reluctant to recommend such treatments.

The other day a Dr. at Mayo said that 33% of AAG patients who got IVIG got much better after. That is about half of the positive results then for other autoimmune attacking illnesses like Vasculitis and CIDP.

In regards to Cyclophosphamide (chemo med used in autoimmune disease), I can't speak of any published studies of it's success in treating AAG, but in researching other autoimmune nerve damaging illness there are some studies I can mention. For example in some forms of vasculitis they treat it with a double punch of both Cyclo and high dose prednisone at the same time with about 75% success rate. They also just completed million dollar trial where Rituximab and high dose prednisone proved to be as effective with slightly less and or different side effects.

__________________________________________________

In my opinion it doesn't. -opathy refers to dysfunction, not damage.

I have AAG and I specifically asked my neurologist if AAG damages my autonomic ganglia and she said no.

The answer to this question can be found here:

Approximately 50-60% of patients with AAG have antibodies to gnAChR antibody and these specifically bind to the a3 subunit. These receptors are present in all peripheral autonomic ganglia including sympathetic, parasympathetic, and enteric systems. Ganglionic nicotinic AChRs are antigenically different, but genetically and functionally similar to muscle ACh receptors. The gnAChR consists of a pentamer with two a3 subunits associated with the B2, B4, or a5 subunits. Antibodies against these receptors decrease the strength of synaptic transmission at the autonomic ganglia by reducing the number of functional gnAChR.

This source (a book chapter from Dr. Vernino) states that the disease process involved with AAG does not damage the autonomic ganglia.

[E Soskis]

I suppose that the ganglia could remain intact and functional - it's just when the antibodies attach to them, they are rendered useless. So, we could assume the actual ganglia are not damaged but, they are not functional either. My cardiologist said that the cardiac ganglia are different from the ganglia in the rest of the body. He said once the antibodies attach they do actually destroy the ganglia and the destruction is progressive. Whether it is the actual ganglia or the nerve pathways that become damaged, I don't know - the end result is the same: dysfunctional nervous conduction in the cardiac tissue causing arrhythmias and poor cardiac function. I have noticed that since starting plasma exchanges, I have recovered some nervous system functioning in all areas except the cardiac system - my heart continues to deteriorate with much arrhythmias and dysfunction. I do become quite ill after plasma exchange and it takes up to 48 hours to recover but, then I'm "good" for a few weeks until the antibodies build up again requiring another plasma exchange - kind of a never-ending cycle......

[diabeticgonewild]

I suppose that the ganglia could remain intact and functional - it's just when the antibodies attach to them, they are rendered useless. So, we could assume the actual ganglia are not damaged but, they are not functional either. My cardiologist said that the cardiac ganglia are different from the ganglia in the rest of the body. He said once the antibodies attach they do actually destroy the ganglia and the destruction is progressive. Whether it is the actual ganglia or the nerve pathways that become damaged, I don't know - the end result is the same: dysfunctional nervous conduction in the cardiac tissue causing arrhythmias and poor cardiac function. I have noticed that since starting plasma exchanges, I have recovered some nervous system functioning in all areas except the cardiac system - my heart continues to deteriorate with much arrhythmias and dysfunction. I do become quite ill after plasma exchange and it takes up to 48 hours to recover but, then I'm "good" for a few weeks until the antibodies build up again requiring another plasma exchange - kind of a never-ending cycle......

My orthostatic hypotension is much less significant since starting treatment. I still do have resting tachycardia, which worsens while standing, to a certain degree, depending on the day.

I am not an expert on the disease and I am not going to go against the word of a medical professional.

I am just pointing out my specific case, but I think the AAG is less severe in my personal situation, although I have another autoimmune disease that is metabolic in nature that can cause progressive autonomic failure.

I think at this point of time the worst component of my AAG is the fatigue, energy, and concentration issues that I have that I think are consequences of my other symptoms (severe nausea, chronic headaches from blood pressure issues, etc.). I actually have a gastric pacemaker/neurostimulator for severe nausea from severe gastroparesis (it's called Enterra, manufactured by Medtronic). It is FDA approved on a compassionate basis in the US, so you would have to find the right gastroenterologist who has the right connections to a hospital whose internal board has approved the implantation of the device.

My doctor gave me the choice of either a feeding tube or the gastric neurostimulator, and I chose the neurostimulator. I can pretty much eat whatever I want, in limited quantities. It is a life-changer.

[looneymom]

Bump up.

[Babis]

I could not help but notice that, 6 months prior to AAG, I had first developed hypothalamic hypogonadism (testosterone deficiency). I always thought this was no coincidence. I also noticed that when I received testosterone therapy, my symptoms of AAG got better too. I have been taking a university course in immunology, and I think I finally know why!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2200579/pdf/cei0106-0410.pdf

"It is thus suggested that reduced levels of testosterone, together with an abnormal level of oestrogen, may trigger the onset or exacerbate the course of human autoimune diseases"

Some neurologists had suggested cortisone for AAG, but endocrinologists warned against it as it would worsen hypogonadism, so I avoided it. That was a good thing, as the above article suggests that (male) patients with hypogonadism and autoimmune disease need testosterone, not cortisone, to moderately supress their immune system.

If you have endocrine problems, get tested and treated by a competent endocrinologist (I had to see 10 to find a good one), as it may help your AAG.

[Folo]

On 11/6/2011 at 10:46 PM, Babis said:

I have had POTS for a year, and was recently diagnosed with AAG. I was positive for the alpha-3 ganglionic acetylcholine receptor autoantibody. There is a test called "Mayo Clinic Autoimmune Dysautonomia Evaluation"

http://www.mayomedicallaboratories.com/articles/hottopics/2011/02-auto-dys-eval/index.html

but most of my doctors refused to order it. I had to see 10 specialists before someone agreed to order the test, and when it was finally performed the result was positive. I then visited the Mayo Clinic neuroimmunology department, and they did a very good job, catching many things my previous doctors had missed. They also recommended immunotherapy, with IVIg or steroids, followed by azathiopine or CellCept. I am in a hospital in Germany right now and just finished my second day of IVIg (0.4 g / kg / day). I pray that it works; if not I will need plasma exchange or immunosupressants.

Hi babis? Where in Germany can one get this and can one get testing for aag in Germany as well?

BR, Olof