Jump to content

arizona girl

Members
  • Content Count

    881
  • Joined

  • Last visited

Community Reputation

0 Neutral

About arizona girl

  • Rank
    Advanced Member

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Gender
    Female
  • Location
    chandler, arizona

Recent Profile Visitors

5,102 profile views
  1. Well it is associated with many medical conditions, including autoimmune disease. My dysautonomia is due to the damage done to my small fiber nerves as a result of autoimmune disease. Is the mthfr gene the one the caused my particular autoimmune issues, don't know, but maybe. It might be another gene I don't know about. Since I have one bad one I may have more. There is a lot of research going on with it. My cardio is who tested mine as it's associated with some cardiovascular disease. The good news is it's easy to bypass. Cut out all foods and supplements that have folic acid the inactive for
  2. Thanks Rachel I'm mthfr homozygous and my father is hetrozygous and just had major clotting issues after he broke his hip and had replacement. I'm also back on plaquinel almost two years now. Was put on it about 20 years ago when they thought I had mixed connective tissue. Between that and the thyroid meds my lipid panel and inflammatory markers improved even more then just the ivig alone. Dizzy, if you are mthfr one must be careful with the form of b vitamins they take. Regular or inactive folic acid can build up in the body and cause problems if you are mthfr, as the enzyme the converts is s
  3. Yes, I think pex can lower that number. As it pulls out all the proteins good and bad. Due ask your doctor. Remember I got anemia after pex along with an infection. So those things should be watched closely. The infection and the anemia were partly why I switched over to ivig. By then though many of the antibodies had been cleaned from my body, though they do come back. I believe the ivig is modulating their ability to cause further damage, at least partly any way. My labs have all improved. I still though deal with muscle spasms and infections here and there. IVIG infusions are rougher when I
  4. Hi momG, Interesting enough your immune system can be both hyper and hypo at the same time. I'm living proof of that. I have a primary immune deficiency (hypo) along with 3 autoimmune diseases (hyper) one of which is hashimoto. Charlotte Cunningham Rundles, MD who studies and treats primary immune diseases like CVID, has a certain percentage of her patients that also present with autoimmune diseases. I just like to say my immune system is dysfunctional. While I have treatment options available for the different autoimmunes and infusion of ivig for the deficiency, they won't cure them. Perhaps
  5. Hi Ruby, I also have cvid/hypogamma, along with a few autoimmune diseases that attacked my small fiber nerves causing the autonomic neuropathy/dysautonomia symptoms. I've now been on ivig/privigen monthly for about 3 years. I'm not cured but my infection rate dropped and some of my autonomic symptoms and nerve pain improved. Don't know if you've decided to start the ivig or subq or not, if you do though I can share my tips I've learned through the process with you.
  6. Hi Sarah, Been following your story. Yes I have had elevations in both those labs. I turned out to have several autoimmune diseases along with an immune deficiency. While they point to inflammation they are considered non specific. With the elevated wbc and platelets. There are immune deficiency conditions and autoimmune diseases that can cause these. Have they tested you for any hemo autoimmune disease? With the elevated infection markers, have they tested you for any primary immune diseases? The main test would be a total quantitative immunologlobulin, which tests igg, iga, igm, along with s
  7. Has your allergy immunology doctor tested you to see if you have a primary immune deficiency? Your total quantitative immunoglobulins which are igg, iga, and igm and sub iggs should be tested when one can't clear an infection. You can read more about these at: http://primaryimmune.org Immune problems can underlay and be the source of dysautonomia/pots like symptoms, not the other way around.
  8. Hi sos, I've had the symptoms you've described. The throbbing vibrating leg pain is a classic symptom of peripheral neuropathy. This happens when the small fiber nerves are damaged and can cause many dysautonomia symptoms. The small fiber nerves also control your autonomiic and sensory functions. The sfn are what allow your blood vessels to constrict on standing and push your blood up to your brain. When those nerves are damaged the blood pools in the lower half of the body causing many of the symptoms you just described. The longer you are upright without laying down the worse the symptoms be
  9. Hi Abby, Welcome to the forum and for asking your question. The type of dysautonomia you are asking about is a genetic form. Most of the information and members here at DINET suffer from other types of autonomic dysfunction that can be caused by many different things. The best resource for the genetic form you are asking about can be found here: http://www.familialdysautonomia.org/ As it sounds like this young man has a mild form of it, it may be possible for him to have a very normal life. There is genetic testing available if having children would be a consideration. I think that most of you
  10. I've seen this discussed on the forum before as adies pupil. Mostly it isn't serious, it can however be a symptom of other more serious neurological conditions. If you are on here and also have other autonomomic and dysautonomia symptoms along with the pupils, it might not hurt to research some of the conditions mentioned in this article to make sure you don't fit other associated symptoms/conditions. Neurological disease often can be a primary cause for dysautonomia and pots symptoms. Happy reading. http://www.journalofoptometry.org/en/bilateral-tonic-pupils-secondary-to/articulo/90302861/
  11. Thanks Ifree for posting this here. DINET has also posted the link on it's facebook page and in the information forum. It will be interesting to see what they present. Hope everyone poses some good questions to them. Anyone that does participate, please come back and share with the rest of on the forum.
  12. If there is such a thing as true primary pots, it is a diagnosis of exclusion or idiopathic, meaning they can't find the cause. He is saying that you have the symptoms of pots secondary to a primary cause, that has yet to be diagnosed. He is referring you to a neurologist to try to figure out what is causing your symptoms that he has labeled pots like. There are many neurological conditions that cause dysfunction of the autonomic nervous system. Small fiber nerve damage to the blood vessels is one of them and could explain his description. A skin biopsy can diagnose that along with blood test
  13. numerous, but I have autoimmune small fiber autonomic neuropathy, which is nerve damage of the small fiber nerves that control your bodies autonomic functions. These were probably damaged by untreated autoimmune disease. I have a surge in norepi on standing as compensation for my blood vessels not constricting due to the nerve damage. So my bp/hr go up on standing and drop low on laying down. Labetalol as an alpha/beta blocker helps with those kind of swings. I was also found to have hypogammaglobulinemia of my igg and igm, which are your master infection fighters of your immune system (ivig)
  14. I take labetalol prescribed by Dr.Grubb. I could not continue with clonidine as my body had an almost addictive response to it, requiring more and more to keep my blood pressure down. I use the short acting low dose labetalol and tirate it up or down as needed. Treating my causes has helped improve it, as well I don't swing as high or as wide anymore. I still have days where it acts up though.
  15. Oh don't I know it is hard to find a good gi, especially a female one. Glad to hear you've got your follow up appointments. You may want to mention small fiber neuropathy which could be contributing to slow motility and or spasms, the gi tract moves things through those nerves. You have documented POTS, it is not much of a leap to connect the slow motility to the POTS and then to possible neuropathy. Also if your ovaries where removed along with thyroid and parathyroid that can also impact your hormone levels which can impact autonomic functions. I have hashimoto and getting my meds at the rig
×
×
  • Create New...