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Psalm 23

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  1. A number of years ago I tried low dose naltrexone as was recommended by my then Rheumatologist. He said it might help sleep ( which is no longer an issue), pain and fatigue. I gave it 6 months. Three months of 3mg then three months of 4.5mg. It did absolutely nothing for me. I'm glad some people are receiving some benefits from it. A few years after that he recommended I try Nuvigil. It caused severe insomnia and greatly increased my already significant flu-like feelings so that med only worsened everything. A number of years later after being diagnosed with mod-severe OSA my Pulmonologist rec
  2. Actually bruising easily is one of innumerable mast cell activation syndrome/disorder symptoms. When mast cells degranulate one of the many chemicals released is heparin which is a blood thinner. Many people with dysautonomia have a co-existing mast cell disorder. Definitely something worth being evaluated for as much of the treatment is OTC and for some can potentially eliminate or reduce the symptom severity. http://www.mastattack.org/2014/10/mcas-blood-bone-marrow-and-clotting/ This is basically a condensed down version of Dr. Afrins more comprehensive article. He has written a fe
  3. Hello, Is your 2100 NE level the standing result from a supine /standing catacholamine test ? My results were 1236 supine and 2922 standing. The results were not influenced by any meds I was taking. I was told I had a hyperadrenergic response to standing. My b/p is high on ttt but labile as a general rule. Do you have a significant tremor when upright ? My initial diagnosis was neuropathic pots with a hyperadrenergic component. As time went on that diagnosis morphed into AAN. In my case the elevated b/p and NE level are compensatory mechanisms so salt ( 8 grams ) and 2.5 liters of fluid w
  4. That's great that taking Imodium allows you to tolerate your Plaquenil. Bare in mind that if you were to take Imuran there is a lot of lab work required. One has to first have a Thiopurine methyltransferase test to determine whether or not you are even a candidate for taking Imuran. After starting the med there are weekly then every other week labs which eventually become monthly for the duration. Basically CBC with diff and liver function studies. What I call my low sensory overload threshold actually improved prior to starting the IVIG. It began to improve after starting on Clonidine an
  5. Hello p8d, I'm sorry my last post was not very clear. So I edited it. With regard to my b/p it is actually very labile with the exception of my ttt pressures which are very high so beyond the 10 minute standing time my b/p is all over the place. It does sound like we are very similar in that regard after all. I was mistakenly diagnosed with lupus by two different Rheumatologists and put on Plaquenil for 6 years which temporarily helped a number of different non-lupus symptoms which never made any sense until recently. Interestingly Plaquenil is now being used for POTS patients as wel
  6. Yes. It does help. Primarily with the ability to remain standing for much longer periods of time without developing jello legs, shaking, nausea, blurred vision, tachycardia, air sucked out of your lungs feeling and ultimately dizziness. Because I have an intact adrenergic function my b/p doesn't drop with a 10 minute ttt. Rather I have a hyperadrenergic response to standing so in my case we are hoping for a correction to my extremely high standing b/p and rest of the time very labile b/p which can range from 80s/40s to 200/116. I am sorry to say that thus far the IVIG has not helped my fatigue
  7. Hello, I am currently receiving IVIG and am on Medicare but because I am receiving it for a Non - FDA approved diagnosis ( AAN ) Medicare will not cover it however my Aetna part D drug plan will. Go figure. It did of course have to go through an authorization process and it has to be done as a home infusion. The way it worked for me was my Neurologist sent IVIG orders to NuFactor ( specialty pharmacy ) who then submitted paperwork to Aetna who then approved it. NuFactor then contacted a local infusion company they had a contract with who then set up an infusion schedule with me. NuFactor
  8. Hello and thank you Chaos. It's good to hear from you. Yes. It is very disappointing when a treatment either doesn't help or is not tolerated. How wonderful that your IVIG / Rituxan combination therapy is helping you. That must be pretty exciting to feel better then you have in a decade. Hopefully it's a result of the treatment and not related to a normal improved disease fluctuation state. I do realize it's a difficult balance between optimism and realism as one doesn't want to set ones self up for disappointment but yet is hopeful for improvement. I do hope as you continue on this combi
  9. Hi Rich, That may not always be the rule though. I think it really depends upon the individual patient, the risk factors of adding in an additional potentially damaging medication and what experiences the Neurologist has had with combination therapies. The article you make mention of is from 2009 and involves a very small pool of patients. I should think that while more recent studies may not be published Mayo Neurologists would share relevant beneficial data with one another. I am a Mayo patient actually. Hi Kim, After three months of taking the Cellcept it had to be discontinu
  10. Hi ANCY, I just wanted to to tell you how sorry I am at all you've been through and are continuing to go through. What a frightful situation to be sure. The only additional thing I can think to suggest trying are the Lidocaine 5 % prescription patches which I find immensely helpful for my back pain. I'll be praying for you my friend.
  11. Hello ares22, Thank you so much for sharing ! I'm so sorry to hear that your symptoms have become so debilitating and your IVIG is not as effective as it had previously been. How disappointing. I've read about others experiencing the same thing which has caused me to wonder how long mine will continue to be helpful. I receive my IVIG every other week. I do notice it working less the farther away I am from the day of infusion. I can certainly understand your hesitation with taking Cellcept. It is by far the scariest medication I have ever been on. Thankfully thus far I seem to be toleratin
  12. With the exception of a one month hold which was required for ARS retesting I have been receiving IVIG for approximately one year. While I have realized significant symptom improvement in some areas in other areas there has been no improvement at all so combination therapy was put out there by my Neurologist as a treatment option. As of today I have started this more aggressive form of treatment and wonder if any other of you with AAN/AAG have gone this route. If so what was your experience like ? Did your condition improve ? Did you deal with any side effect issues from the Mycophenolate ? I
  13. Hello, I'm sorry you've had such an issue with IVIG side effects. For some they can be so problematic. As was pointed out if your insurance approves it changing to a different brand can possibly help. I'm on Privigen. The rate starts at 30-45/hr and is not to exceed 75/hr but can be run less then the 50/hr if there is a tolerance issue. It did have to be stopped and restarted and the rate reduced a few times because of a transient hypertension issue. Per the Neurologist order I premedicate with Tylenol and Betamethasone. Normally Benadryl would also be given but because I am already on a
  14. Hi ares22, That great. I'm so happy for you. I hope you achieve significant improvement with it without the unwanted side effects. I wish I could answer that question for you but quite honestly my Neurologist was not specific and since he was not presenting SCIG as an option I really didn't ask. It was just made as a blanket statement so I assumed he was just talking about the same potential side effects as one would expect with IVIG except that the incidence increased with SCIG. That was my take away. I'm sorry you've had to endure terrible side effects with the IVIG but glad t
  15. Hello, I have been on IVIG since April ( six weeks of weekly and now every other week ) and have found it helps my OI symptoms significantly. I asked my Neurologist about SCIG early on but was told there were more side effect issues with it so for me it as not presented as an option. I hope you're able to get it approved and at least try it and see if you are able to tolerate it and get better results from receiving the IG that way. Receiving the IG subcutaneously certainly seems a lot less life disruptive then Intravenously as well.
  16. Hi ANCY For my surgery of a few weeks ago between lots of extra IV fluids, IV Zofran and Reglan and use of many internal sutures and steristrips for the incision I did pretty well. Because of difficulty waking up, tachycardia and hypotension I just end up in the recovery room being monitored longer. It happens every time. When you have to be fully sedated and general intolerance to anesthesia is an issue it's difficult for the docs to try and figure how to adjust the anesthesia to avoid all the side effects we sensitive ones are more prone to. I wish I could think of something to sug
  17. I just wanted to inform those of you who reside in Southern California of the Dysautonomia Support Group meeting on Sunday, June 26th from 2:00-4:00 pm at Good Samaritan Hospital in Los Angeles. This meeting is being sponsored by Dr. Cannom, a well respected Cardiologist who is on our Physician referral list. He has very graciously opened this support group up to patients other then just his own. I attended a few years back and really enjoyed the opportunity to connect with other Dysautonomia patients and to hear a variety of interesting speakers. If you are interested please pm me and I'll gi
  18. What a wonderful update ANCY ! I am so very happy for you ! I hope you're still continuing to improve and having fun in the kitchen today.
  19. Thanks Kris ! I hope you get some answers and symptom improvement or resolution. I know this can be such a frightfully long and frustrating journey. Keep on in your search for answers though. It will pay off in the end. I love your picture btw. It's just beautiful. I used to show hunter/jumper and flat now many years back. Janet
  20. So basically it's the thought that ones autonomic neuropathy is the result of an immune system mistakenly putting out auto-antibodies directed against the autonomic nervous system. An abnormal response that was triggered by exposure to an infection. Thus supporting an autoimmunity basis for the condition. In my case a battle many years ago with viral meningitis is now thought quite possibly the trigger in the development of my autoimmune autonomic neuropathy. The meningitis itself resolved but I was never the same afterwards for reasons that could never be explained until years later when
  21. I have found only quite recently that taking very small doses of adderall helps to improve my fatigue and brain function. The prescription is actually for 10mg bid but I only take 5 mg once daily. When I tried taking the higher dosage I developed intolerable tachycardia and palpitations. I tried modafinil but found it only made me feel very flu- like. When I started taking mast cell medications I realized an enormous improvement in my brain function but not as much as I would have liked which was why I began looking for something else to add in. Of course the basics like fluid and salt ( if yo
  22. You're welcome. That's wonderful Kris. I pray you get those answers you so desperately need !
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