Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

MNsue

Members
  • Content Count

    205
  • Joined

  • Last visited

Community Reputation

0 Neutral

About MNsue

  • Rank
    Advanced Member

Recent Profile Visitors

2,649 profile views
  1. Unfortunately my cardiologist doesn't know the answer?
  2. I've had Pots for almost 30 years and have recently been diagnosed with coronary artery disease. I'm wondering if anyone else has had this diagnosis. Have you been told that fludrocourtisone, ivabridine or Midodrine will increase risk of heart attack?
  3. I have been on IGG for over 2 years. I can say that initially it was difficult, but it helped stop the progression of my neuropathy. Hopefully, you won't have a hard time, but be prepared to need extra help after your IV just in case you have the fever or headahes. I am now on a sub Q form that I give myself 5x per week, and I don't have as many side effects. I think many people who have a hard time give up on treatment. I remember that I almost did, but am thankful that my Doctor found a good alternative for me. I saw another woman who had worse side effects than I did( and there were not many) and she was so much better a year later. She did not even look the same. Best of luck.
  4. My experience with autoimmune POTs is that some nerve damage can be reversed and some symptoms can get better with treatment, other long term issues have not gone away with treatment.
  5. Hi everyone, H1N1 is going crazy in our community. Has anyone been given an antiviral for H1N1? Did it work for you? Thanks
  6. I have hashimotos, vitaliago, autoimmune polyneuropathy that affects my central nervous system and autonomic nervous system. So many of us have hashimotos. I think it is interesting.
  7. I have POTS and neuropathy that affects my left side. I will have sensory loss and weakness in the left side of my face, moving down my shoulder into my left fingers, my left hip, and numbness in my left foot and ankle. I also have tremors that seem worse when my POTS symptoms are bad. I have worked with an immunologist for the last 2 1/2 years in Minnesota. I don't have a the antibodies that show myastenia gravis, however I do have a very high thyroid antibody level, vitaliago, hashimotos, and a family history of autoimmune disease. I currently inject myself with vivaglobin a form of IvIG. It has been very helpful for me. I heard that Mayo is doing some studies with IVIG and neuropathy, however I don't know if they are working with the injectable form. I had a hard time tolerating the once a month high dose IvIG, then went to every two week and finally the injectable form. I have noticed that my neuropathy symptoms will get worse if I am fighting off an infection. Does yours do the same? Good Luck. Rhonda
  8. I also crash around 3 to 5pm. I was told that our cortisol levels are low at that time of day. I think my adrenal gland has a hard time keeping up and needs a break around that time of day. Making dinner is very difficult if not impossible some days. I have a new plan to cook in the morning and warm up leftovers when they come home in the evening. Rhonda
  9. No I did not test positive for that antibody. I should add that I was in remission for about 2 years while being treated with steroids for chronic sinus infections. Once I had sinus surgery and did not need the anitbiotics and steroids, I started to go down hill fast. I think the neruological symptoms propted my doctor to look for additional answers.
  10. I have worked with a neurologist and an immunologist for 2 and 1/2 years to get my neuropathy and POTS under control. I am happy to say that I am stable. My only markers for an autoimmune disease is a strong family history, high thyroid antibodies, vitaligo and a progressive neuropathy that looked a lot like MS. I started with high dose solumedrol (1,000 mg IV 1x per month for 6 months) It seemed to help, but the side effects were not good. We then moved to IVIG 75 grams 1x per month. I will be honest, this was very difficult. I became very sick from the treatment. Luckily I have a good doctor that moved me to the Sub Q form (Vivaglobin) in January. I now inject 20 mg 5 times a week. It is a big shot, however I feel pretty good, and my neuropathy is in remission. I have regained full use and strength in my left side, however I still have times when the weakness will return for a short period of time. My POTS has improved, however it has not gone away. I know that the treatment is very expensive and am lucky that my insurance company is covering the drug. I live in fear, that someone will decide that I am not eligible for the drug. Without it I was losing more and more mobility and strength. I hope this helps. Wanda
  11. I had two pregnacies. The first I was on bed rest for 2 months due to pre-term labor. I was very ill after my first pregnancy. Three years later I had my second child. I did quite well after this birth for about 5 months, then I crashed. I was able to be more active durring my second pregnancy and I think that helped. Rhonda
  12. The theory behind the IVIG for patients like me is to have my over active antibodies attach to the new antibodies. They believe that there may be regulator antibodies in the IVIG that help keep my immune system working properly. I was also diagnosed with CFS prior to being diagnosed with POTS and Neuropathy. It has been ill for over 17 years. I am so thankful the new information they have on the immune system. I think they are making more and more breakthroughs. . I hope this helps explain why they tried the treatment. Rhonda
  13. Hello everyone, It has been a while since I posted, but I wanted to share a treatment that has been working well for my autoimmune mediated neuropathy and POTS. I spent the last two years working with an immunologist trying to stabilize my POTS and neuropathy. I started with high dose prednisone, moved on to IVIG once a month, then IVIG once every other week due to adverse side effects. The IVIG worked, however I was getting quite ill from the large dose. In January I moved to the sub cutaneous form of IVIG called vivaglobin. I give myself an injection 5 times a week. I seem to be more stable and the side effects are much better. I saw my neurologist today, and he said that he would not have recognized me due to the vast improvement in my symptoms. My POTS is much more controlled. I still need to take florinif and midodrine from time to time, but I am not dependent on it. The only autoimmune marker I had was a very high thyroid antibody count, so I was not a clear case of autoimmune neuropathy. I am so thankful for that my immunologist did not give up on me. I hope this is helpful to others. Rhonda
  14. A few weeks ago there were a number of post's regarding neuropathy. I currently get IVIG infusion once every two weeks to control my neuropathy. I have noticed a number of people with similar symptoms to mine and hope others can benefit from looking up Chronic Inflammatory Demyelinating Polyneruopathy. It is very hard to diagnose, and it does not show up on an MRI and and can be present without blood markers. I have debated if the side effects of IVIG were worth it. I believe it has kept me from having further problems. My POTS is much better, but I still have issues with weakness from time to time. I hope this is helpful to some. Rhonda
×
×
  • Create New...