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Babis

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Everything posted by Babis

  1. 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.
  2. 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?
  3. 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.
  4. 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.
  5. 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?
  6. Hanna, Could you update us on what happened? Did Sulfalazine work? Did you get pregnant? Thanks, Babis
  7. 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).
  8. Hi Arizona Girl, My doctors give me a round of IVIg every 6-8 weeks. In each round, I receive 30 gr / day for 5 days. I was told that is reasonable, since the half life of IVIg is about 3-4 weeks. This regimen was advised by European University doctors (Greece and Germany). It is very similar to that used for Myasthenia Gravis. I am now told that the dose will be reduced to 3 days (30 gr / day) every 8 weeks (probably to save money). I am a little scared this might be insufficient, but we will see. The protocol suggested by Mayo was a little different (5 days of IVIg initially, then once a week for 5 weeks, then stop IVIg and start immunosuppressants). The sides of immunosupressants are steep, so I have managed to avoid that so far, sticking to the (much more expensive) IVIg. The Mayo neuroimmunologist (Dr Andrew McKeon) said the European protocol is also reasonable. The symptoms that I had and improved dramatically with immunotherapy were disabling & numerous. They included sympomts of dysautonomia (dizziness, faintness, POTS, crashing fatigue, heat intolerance, GI dysmotility, irritable bowel, aerophagia etc etc). They also included symptoms of encephalitis (sensory integration dysfunction; severe vision problems such as "frame-skipping" or jittery vision, inability to process moving or bright or complicated patterns, palinopsia; sensitivity to sound; brain 'numbness' or extremely uncomfortable "cotton brain" sensations, etc etc). My doctors did not take these symptoms seriously and for a year thought they were migrainous or psychological. I kept insisting it was not migraine nor psychological but nobody listened. Even Dr McKeon at Mayo thought these symptoms were migrainous initially. But then the Mayo radiologist did an excellent software analysis of my brain PET scan, which showed hypometabolism in the visual cortex and elsewhere. Then, given the AChR antobody positivity, Dr McKeon immediately suspected autoimmunity could cause the visual problems (in addition to dysautonomia), and suggested trying IVIg. This worked, which proves that his second hypothesis was right, finally...
  9. Just wanted to note that I had a further 25% imrpovement one week after my third round of IVIg. I am now 75% recovered :-) I hope this continues after the next round of immunotherapy. It looks like I will be receiving 5 days of IVIg every 6 weeks, for at least a year.... From my experience, and my delayed diagnosis (which happened only after I insisted for the autoimmuned dysautonomia evaluation), I think AAG is massively underdiagnosed, and many people suffer unnecessarily.... Many autonomic labolatories, such as Froedert Hospital, are sometimes able to tell that someone has POTS, but do little to discover the underlying cause. So they give people symptomatic treatments, instead of the therapy that could actually cure them. I am lucky that I ended up in Mayo clinic neuroimmunology, and evel luckier to be in Europe now for treatment, where doctors are much more willing to offer IVIg, giving me my life back...
  10. Steven Vernino, MD, University of Texas at Dallas, neuroimmunologist, worked at Mayo clinic, specializes in autoimmune dysautonomia.
  11. Sue, the autoimmune dysautonomia evaluation detects roughly 50% of cases of autoimmune dysautonomia. Than means there is another 50% of cases in which the antibodies are not known, and yet may still respond to immunotherapy. So, if you had subacute onset and there is suspicion of autoimmunity, a couple of months of IVIg may be worthwhile to try, even if you are antibody negative... Since this conclusion comes from articles written by Steven Vernino himself, you could ask him if it might be worth trying IVIg even if you are antibodies come back negative negative. You can also have a look at this . Autoimmune dementia shares many similarities with autoimmune dysautonomia and autoimmune encephalitis (they all have subacute onset, they are commonly missed treatable conditions, they are immunotherapy responsive, etc).
  12. Hey Sue, If the neurologist you refer to is Steven Vernino, he seems an excellent choice. He has published many articles on AAG and is among the leaders in the field. He was in the team that discovered the ganglionic acetylcholine receptor autoantibodies, and designed the essay used to detect and measure them at Mayo. And yes, most doctors I saw shrug their shoulders or offered my salt and water or symptomatic treatments; nobody was willing to test for antibodies; I had to see tens of doctors and beg them for testing me for a whole year, before somebody agreed to order the test. Even after it came back positive, they thought little of it and were unwilling to offer immunotherapy. Extremely frustrating. They said many things that contradicted the literature and common sense, just to avoid the responsibility of immunotherapy. I explained to them I had severe visual symptoms and many things that my brain could no longer do, and they told me I was stressed and depressed, even though they knew I had dysautonomia and ganglionic antibodies. Luckily, I trusted myself and the literature more than these doctors. With the positive result in my hands, I thought I had wasted enough time trying to educate them, and decided to go to someone who is educated already. So I e-mailed one of the neuroimmunologists at Mayo involved in publications on these antibodies. He was kind enough to offer me an appointment in 2 days (as opposed to 3 months I had to wait to see the incompetent doctors at Froedert Hospital). Once I got to Mayo, I asked if immunotherapy could help, and he said yes, and offered to do a month of IVIg right there and then. Since I was scheduled to move to Europe, it could not be done, so I asked him to write his regimen in detail in his summary letter, which he happily did. He also sent me a revised interpretation of my brain PET scan (which had been misinterpreted as normal at Froedert Hospital) and was strongly suggestive of autoimmune encephalitis, mainly in the visual cortex. This is seen in a small percentage of people with AAG. After moving to Europe, I showed my Mayo records to the neuros at the hospital, and luckily they agreed to follow the Mayo suggestions for immunotherapy and even improve them further. My dramatic response after 2 months of IVIg shows that both the encephalitis and the dysautonomia were indeed autoimmune. I now have my life back, thanks to Mayo neuroimmunology, and thanks to trusting myself and the literature, instead of some illiterate "doctors". My advice: do not settle for salt & water or symptomatic therapies. These are useful but not enough. Seek an accurate diagnosis of the underlying causes, and therapies that treat those causes, not the symptoms. From my experience (saw over 50 doctors) 90% of doctors do not really know what dysautonomia is, 95% of them cannot properly diagnose it, and 99% of them cannot properly treat it. So your best bet is to go to pubmed, seek doctors with extensive publications on the subject, and pay them a visit. This has worked remarkably well for me, both in terms of diagnosis and treatment.
  13. I received 5 days of IVIg (Privigen), and had no improvement for the first 3 weeks, but I saw a mild (25%) improvement the 4th week. Then I received 5 more days of IVIg (Gamunex), and felt nothing for a week, but I had further 25% improvement after the 2nd week. My symptoms of dysautonomia and encephalitis (severe very strange vision problems, confirmed in a PET scan as hypometabolism in the visual cortex) both improved, which proves that both problems were autoimmune. I am very happy about this response, I hope I continue to improve. I am scheduled for another round of IVIg in 6 weeks.
  14. Hey, Erika: How many rounds of IVIg did you receive? How many days was each round? And how long after the symptom onset was your IVIg treatment? I ask because many rounds of IVIg may be needed to see a result, and because shorter delay for immunotherapy leads to better results. I also have the neuronal ganglionic alpha-3 AChR autoantibody. I received 5 days of IVIg (Privigen), and had no improvement for the first 3 weeks, but I saw a mild (25%-50%) improvement the 4th week. Then I received 5 more days of IVIg (Gamunex), and felt nothing for a week, but I had significant improvement (50-75%) the 2nd week. If I add physical therapy for POTS and further rounds of IVIg that are scheduled, I think I may fully recover... The literature suggests that if a single round of IVIg has no result, then many rounds of IVIg, or combined immunotherapy (IVIg, Plasma Exchange, Immunosupressants) plus physical therapy can lead to a response.
  15. Have you had an electromyogram (EMG)? It is important in order to exclude ALS, muscular dystrophy, etc. Experts (hard to find in the US) can also do a special form of EMG to rule out mitochondrial disorder. I have muscle loss and fasciculations so I went to a Professor of Neurology with significant expertise in neuromuscular disorders. She performed an EMG and found some abnormalities but was able to determine that their cause is benign and to rule out any of the above serious diseases. It seems that the atrophy is due to hypopituitarism (low testosterone and growth hormone). The fasciculations may be part of AAG. Muscle fasciculations are common in Guillain Barre syndrome, and AAG is a rare variant of Guillain Barre.
  16. There are hundreds of articles out there, especially on AAG (autoimmune autonomic ganglionopathy). Here are a few articles discussing immunotherapy: Ganglionic acetylcholine receptor autoantibody: oncological, neurological, and serological accompaniments. (Table 4) Immunotherapy for autoimmune autonomic ganglionopathy. Efficacy of immunotherapy in seropositive and seronegative putative autoimmune autonomic ganglionopathy. Recent advances in autoimmune autonomic ganglionopathy. Combined immunomodulatory therapy in autoimmune autonomic ganglionopathy. Autoimmune autonomic ganglionopathy with Sjögren's syndrome: significance of ganglionic acetylcholine receptor antibody and therapeutic approach. Anti-neuronal antibodies in acute pandysautonomia. Long-term treatment with rituximab of autoimmune autonomic ganglionopathy in a patient with lymphoma. Autoimmune channelopathies: well-established and emerging immunotherapy-responsive diseases of the peripheral and central nervous systems. Coexistent autoimmune autonomic ganglionopathy and myasthenia gravis associated with non-small-cell lung cancer. Autoimmune autonomic ganglionopathy with late-onset encephalopathy. Autoimmune Autonomic Ganglionopathy Acute pandysautonomia--restitutio ad integrum by high prednisolone therapy. Other autonomic neuropathies associated with ganglionic antibody. The spectrum of immune-mediated autonomic neuropathies: insights from the clinicopathological features Finally, this is not immunotherapy, but a symptomatic therapy that increases adrenergic tone (used for 20 years in Asia, still in clinical trials in Western countries): http://www.ncbi.nlm....pubmed/16217067 You can find more articles by tracing the citations. Unfortunately, most articles are recent, and most physicians live in the Medieval epoch. Even some dysautonomia 'experts' I have seen are not up to date. But the subject is a matter of active research and awareness will inevitably increase in the future. It is important to realize that: -60% of cases of AAG respond to immunotherapy -Many antibody-negative cases also respond to immunotherapy -In general, neuropathies mediated by antibodies targeting receptors on the nerve cell membrane (such as AAG) tend to respond better to immunotherapy compared to neuropathies mediated by antibodies against nerve cells themselves. -Early immunotherapy is associated with better outcome. So wasting time with non-knowledgeable doctors is a 'luxury' that many of us cannot afford. I wasted a year hoping to get help from local physicians at Columbia St Mary's and the Medical College of Wisconsin and got very little out of it (not only did they deny immunotherapy, they denied even testing for ganglionic antibodies). Now I wish I had gone to one of the authors of the above articles, such as the Mayo Clinic Neuroimmunologists, from the very beginning.
  17. I am taking Metoprolol Tartrate, 6.25 mg, 2-3 times a day and it stops my heart palpitations without making me sleepy or hypotensive. I take it in the morning and afternoon. Metoprolol Succinate (= Toprol XL) is not effective for me, it is like taking a sugar pill. What dose of Toprol XL were you taking? Did you ever try the non XL version (metoprolol tartrate)? Why were you switched to Bystolic?
  18. Btw, from what I hear, the brand of IVIg used makes a big difference in terms of side-effects. (I am not sure about effectiveness). The brand I was given was Privigen. Reading this comparison table, it does not seem such a big surprise that I got severe headache, fever and nausea. Let's see if the next round of IVIg goes better... My doctors said they plan to try 5 days of IVIg every 40 days. They also recommended Mestinon (a parasympathomimetic and a reversible cholinesterase inhibitor) which increases the availability of acetylcholine. It is typically used in Myasthenia Gravis (which is caused by acetylcholine receptor autoantibodies in the neuromuscular junction) but sometimes it is recommended in AAG (caused by acetyclholine receptor antibodies in the neuiron-neuron junction). I have heard of POTS patients having good results from this. For me, unfortunately, Mestinon seems to triger GI problems, such as nausea, vomiting and abdominal pain, as if I did not have enough already from POTS. However, there exist other cholinasterase inhibitors, such as Rivastigmine, that are available as a transdermal patch, and are much less likely to cause GI distress. These are mainly used for Alzheimer's but I will ask my doctors if I can try one of them...
  19. I had remarkable improvement in my irritable bowel using the probiotic strain E. Coli Nissle 1917. Has anyone else tried this strain? I got no bloating from these, unlike other Walgreen-type strains... It seems they were discovered during WW1 in the gut of a German soldier who did not succumb to gastroenteritis like all his other mates. They have been studied for a century and there seems to be a lot of literature in medical journals claiming that they are non-pathogenic, that they protect the colon from invasion by other pathogenic bacteria, that they modulate the membrane permeability and immune system, etc...
  20. Thanks! I just finished my 5th and last day of IVIG. So far I do not feel any better, just nausea and horrible headache. Not sure if the headache is due to IVIG or the spinal tap they did just before that... I also had a tilt table test done today, and it still shows POTS (heart-rate 72 down, 118 up; almost identical to my tilt table test 6 months ago...) I must say I am not overly optimistic. Early immunotherapy (ideally in the acute or subacute onset phase) is more likely to work... But my doctors wasted a year before testing for ganglionic autoantibodies, and starting immunotherapy...
  21. You are totally welcome! I really know how you feel... I hope this may help you and a few others... I might add that thorough screening for autoimmunity is important and should be done routinely and early in POTS or NCS patients, for two reasons. First, early immunotherapy correlates with better outcome. Second, 30% of seropositive cases are associated with cancer rather than infection, and curing the malignancy may stop dysautonomia in addition to saving one's life. Unfortunately, the (89904) Autoimmune Dysautonomia Evaluation is performed routinely only at Mayo Clinic, while most other physicians do not order this blood test routinely, or even refuse to order it when asked. (All my doctors in Wisconsin kept refusing to order it; I had to doctor-shop for a year until an epileptologist ordered a similar test (83380); then I had to show my dysautonomia doctors the positive result and the paper by McKeon et al discussing cancer in order to wake them up, at which point they referred me to Mayo.) Anyway, if your doctor cannot order this test, he should probably be able to order some more common ones: (83380) Paraneoplastic Autoantibody Evaluation (81596) Glutamic Acid Decarboxylase (GAD65) Antibody Assay This combination covers 89904. Of course, there are many others, such as Sjorgen antibodies, anti-mitochondrial antibodies, coeliac disease antibodies etc, that are related to POTS and should be part of routine screening. One should also be checking for Anti-Pituitary and Anti-Hypothalamic Autoantibodies (APA & AHA) if there are endocrine problems in the pituitary-hypothalamus axis, since such problems can worsen POTS. You must push yourself through the system and ask your doctor "what other tests can we do to find out what is causing this?" If he is not willing or knowledgeable enough to order thorough testing, I would suggest not wasting time like I did. If you could get a referal from you insurance and doctors, the best thing to do might be to try as soon as possible to get an appointment with Dr Andrew McKeon or Dr Sean Pittock or Dr Paola Sandroni (Mayo) or Dr Steven Vernino (Texas), since these are some of the few neuroimmunologists with experience in diagnosing and treating autoimmune dysautonomia. I have heard some positive and some mediocre comments about Mayo Clinic. I was warned by some doctors that I might spend $15000 and come back with nothing to help me, except advise to drink salt and water. But in my case, insurance authorized the visit, and I must say that the Mayo neuroimmunologists and radiologists lived up to the hype. My brain MRI & PET scans had been interpreted as normal, but the Mayo radiologists analyzed them with special software and found many crucial things that had been missed before... Anyway, I guess for you the relevant question might be, if the Epstein Barr, CMV and mono infections are active, then is immunosupression contraindicated? On the other hand, IVIG is not immunosupression, and might help with infections as well as autoimmune disease (but is really expensive and requires infusion). So would it be indicated for you? These are questions for your doctors to answer...
  22. HI Dani, Some of it is summarized in this presentation. Basically autoimmune dysautonomia is dysautonomia caused by autoantibodies that mistakenly target some part of the autonomic nervous system. The Mayo Clinic Autoimmune Dysautonomia Evaluation is a simple blood test that picks up around 50% of cases of autoimmune dysautonomia. One key point is there is another 50% of cases that do not show autoantibodies in this test, and yet they still respond to immunotherapy. This means that there are autoantibodies agains the autonomic nervous system that are not yet known. If you got dysautonomia after vaccination, infection, or if there is autoimmunity in your family, then it is quite likely that it is autoimmune. The most common form of autoimmune dysautonomia is autoimmune autonomic ganglionopathy. This is mediated by alpha-3 ganglionic acetylcholine receptor autoantibodies, which target the receptor on the membrane of autonomic ganglia. A paper by McKeon et al and another one by Sandroni and Low are quite informative.
  23. I visited Dr Andrew McKeon at Mayo Clinic neuroimmunology, and he recommended IVIg (0.4 g / kg of body weight / day) for 5 days and then once a week for 5 weeks. Then, continue long term with immunosupressants such as azathiopine or cellcept (these are nasty drugs by the way). I am in the hospital right now, and just finished my second day of IVIg. By the way, an article by Vernino (who first discovered the alpha-3 ganglionic AchR autoantibodies) mentions: "If, on the other hand, the patient has autonomic overactivity (hyperhidrosis, tachycardia) associated with muscle stiffness and spontaneous muscle twitching, one may consider a diagnosis of autoimmune neuromyotonia or Morvan syndrome"
  24. Hi guys. This is what Dr Andrew McKeon at Mayo Clinic neuroimmunology told me: The antibodies of myasthenia gravis (muscular acetylcholine receptor autoantibodies) target the neuromuscular junction. The antibodies of autoimmune autonomic ganglionopathy (alpha-3 ganglionic acetylcholine receptor autoantibodies) target the membrane of autonomic ganglia. That is, they target the neuron to neuron junction. I have the alpha-3 ganglionic acetylcholine receptor autoantibody, and it can be detected with a blood test called the Mayo Clinic Autoimmune Dysautonomia Evaluation. It is nicely explained here: http://www.mayomedic...eval/index.html Treatment for AAG is similar to that of Myasthenia. It includes immunomodulation (IVIG, immunosupressants) and acetylcholinesterase inhibitors (Mestinon).
  25. It is explained here: http://www.mayomedicallaboratories.com/articles/hottopics/2011/02-auto-dys-eval/index.html
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