MNsue

Unfortunately my cardiologist doesn't know the answer?

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?

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.

I just finished Tamaflu, and did not have any problems.

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.

Hi everyone, H1N1 is going crazy in our community. Has anyone been given an antiviral for H1N1? Did it work for you? Thanks

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.

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

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

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.

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

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

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

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

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

I would go see Dr. Melby or Dr. Bendit. They are Electro physiologists and have a number of patients *** POTS and other issues. Both are good Doctors. Dr. Bendit has seen everything and works with Mayo a lot. Dr. Melby is good with ongoing care. Both Dr. Melby and Dr. Bendit treat POTS patients. Good Luck. Rhonda

I also struggle with sensory loss and weakness. I think they have settled on Chronic Inflammatory Demyelinating Ployneruopathy. It is very hard to diagnose. The call it the chronic sister to Gillain-Barre. It is a constant roller coaster, but the IVIG has kept me stronger. I have a number of other autoimmune disorders that would suggest that the neuropathy and POTS are autoimmune related. I don't know if that helps. I wish they would do a study on POTS patients with other related neuropathies. I think they are related. Rhonda.

I can recommend a few doctors in the Minneapolis area. Electrophsysiologist: I have seen Dr. Bendit at the U. He is very knowledgeable and was able to diagnose me, but he travels the word and is hard get get follow-up care. Be careful if he recommends another tilt. He likes to study patients, and he pushed me beyond what I thought was reasonable. ( I was told I had the longest tilt test on record) I couldn't walk more than a shuffle for 3 weeks. I would have an advocate in the room if I needed to do another one. I currently see Dr. Melby at Abbott, and have liked how responsive he is. He worked with Dr. Bendit at the U for a while. He seems very current on POTS research. Neurologist: I currently work with Dr. Golden with the Noran clinic. I do not know of an autonomic neurologist in the metro area. He has been helpful with the left sided weakness I experience. He is very popular, and takes a while to see. I also spent a lot of time at the U of M neurology department. I was there about 2 years ago, and they did not have an autonomic neurologist on staff, nor a very good understanding of how to treat me. Good luck on your search. I get very shaky when my POTS systems are bad. It sounds like you may have been close to passing out. Rhonda

Interesting. The Dr. that encouraged me to have a tilt test was a MD trained in Ayurvedic Medicine. This was after 16 years with no answers. Rhonda

I have a peripheral neuropathy that affects the feeling and strength in my left side. It also affects my POTS. I work with an immunologist that believes that it is autoimmune related and the POTS and neuropathy are part of the same neuropathy. I currently have IVIG once every two weeks, and it has seemed to keep me pretty stable. I have had flare ups, but I usually recover within 4 to 6 weeks. Prior to the IVIG I had left sided weakness and sensory loss that lasted over 6 months. IVIG has not been easy for me. I have lots of side effects, but it is worth it if it keeps me walking. It has also improved my POTs. I was taking 10 mg of midodrine 3 x per day and florinif. Most days I only need 10 mg of midodrine 1x per day. It is very frustrating because there are no clear cut answers with neuropathy. I was told that there was nothing the Dr.s could do until I met this immunologist. I hope you can find some answers. Rhonda

When I am overly tired I will shake and get very cold. I have found that a heating pad on my chest when I am going to bed helps to warm me up and calm down my nervous system. Florinif also helps to calm things down. Good Luck. I hope you can find some relief. Rhonda

Linda, I also have neuropathy that affects my POTS an motor nerves. I seem to have a relapsing and remitting pattern that gets worse with illness or stress. Without treatment I seem to progress a little more with each flare. I am doing IVIG in an attempt to keep it from progressing. It has been pretty hard on me, so sometimes i wonder if it is worth it. Treatment, Prgression ect seem to be pretty undefined. Rhonda

I also notice that my neuropathy will flare with an illness. I now take IVIG and it has helped to restore some weakness in my left leg that lasted over one year. I had a flare this month, but only a little numbness in my face, so far it has not made my leg weak. I have no pain with my neuropathy only numbness and weakness. I hope they can find you some answers. It is no fun to be in pain. I hope your cold goes away, and you start to feel better. Does your neuropathy go away completely once the infection is gone? Mine would get a bit better, but would never clear 100%. Rhonda

Sorry to hear you are having such a difficult time. I also had a number of autoimmune problems, and an immunologist was able to help me. It may be worth checking into. I believe my autoimmune issues caused my POTS. Once my autoimmune disease was in check, my POTS has been a lot better. I did need other meds for a long time, and will probably again if my condition flares up. Rhonda

Sorry to hear you are having such a hard time. You are in my thoughts and prayers. I think a second opinion from another neruo may help. I found that they can each have a different option. The first Neuro I say said "I will see you when you get worse" and offered no treatment. The second Neuro had a number of different treatment options. You may find the same to be true. Hang in there. Rhonda