MNsue

You may want to have some muscle testing done by a neurologist to make sure you have not developed a neuropathy. I found that the physical therapist I work with has been very helpful in documenting the weakness in my legs and arms. The exercises were helpful, but the IVig really made the difference. I am normal in my legs for the first time in over 1 and 1/2 years. IVIG is not for everyone and it has some pretty tough side effects, but it is working for me. Rhonda

I have developed exema on my face and chest since I started taking midodrine alittle over a year ago. I think it has something to do with the amount of flushing I have. The exema goes away with my Ivig treatments for about two weeks. I have found that the Aveno face lotion for dry skin works well. Good luck. Rhonda.

I am on IVIG because I have a progressive neuropathy that has attacked the peripheral nerves in my eyes, face, left arm and left leg. We believe the same neuropathy is causing the POTS. My immunologist explained a study showing animals raised in sterile environments produce antibodies. They believe that these are immune regulating antibodies. Scientist are starting to think that when patients are given large doses of IVIG, the immune regulating antibodies in the IVIG take over for the dysfunctional antibodies of the patient. I will also for a copy of the study next time. I thought others may be interested. The treatment side effects are headache and fever that can last from a few days to a couple of weeks. It is not much fun, but it is keeping me walking. I hope this clarifies things. Thanks Melissa for your explanation. Rhonda

Hello everyone. I thought I would post a little information regarding my experience with IVIG. Yesterday was my 3rd month of IVIG. The first month I started with two days of treatment (60 grams each day). I had a headache and fever for the first two week, however most of my symptoms went away for about two weeks. (weakness and POTS) The 2nd month I was put on a different brand (Gammunex) and took 60 grams. I waited 5 weeks for the 2nd treatment, so my neurological symptoms and POTS returned in week 4. I had a fever and headache for about 4 days after the treatment. I meet with my immunologist and he changed my product to Gammagard liquid. I met with my physical therapist two weeks after this treatment and my left leg was at 100% strength for the first time in over a year. My POTS did not go away like it did the last time, but it was manageable. Yesterday I took my 3rd treatment. The headache has been minor, so I am hopeful that the Gammagard will do the trick. He said that gammagard is the same consistency as blood, so it does not mess with the pressures in your body as much. It seems to be a better product for patients with dysautonomia. It still takes me about 6 hours to do the IV. We hope to speed things up as the side effects are less. I was also told that the side effects seem to go away with time. I thought this may be helpful to others seeking IVIG treatment. Rhonda

I have also had a number of times when I needed to take a medical leave to gain strength after a flare up of symptoms. I found that I was able to focus on getting better. Resting when I needed it and slowly gaining strength by doing floor exercises and walking. Some days after exercise I ended up back in bed, but slowly I was able to gain stamina. It sounds like the reason you are considering a leave is because of your health. If you have a supportive doctor, I would suggest that you try and apply for STD and FMLA. If you go out on a personal leave you may end up without STD and LTD coverage until you return to work. This will protect you if your symptoms become worse and you are unable to return - I would hope that would not happen. Good Luck. I know this is a tough decision. Rhonda

I have been feeling very short of breath lately. I wake up feeling like someone is sitting on my chest. It seems worse when I sleep. I don't have the big adrenaline rushes I usually get at night, just the sensation that I am not getting enough oxygen. My tachy has been pretty hard to control lately so I get very exhausted. I will need to lay down, and then I fall into a very deep sleep. Anyone else get this? Did you do a halter monitor? What about a sleep study? I have been hoping that this will go away, but it seems to be persistent. I have a call into my EP. I am so tired of going to the doctor. Rhonda

Bronwyn, Sorry to hear you are having such a hard time on the steroids. They make me feel drunk and alter my personality. I don't have any natural cures for the sleep issues. I understand that you and your physician would like to avoid any additional prescriptions. I get sick of taking pills and the side effects. It is really hard for your body to heal if it does not get proper sleep. Lack of sleep also affects my moods on prednisone. I have resorted to taking Ambien when I am really sleep deprived. I have not had any bad side effects. I wish I had a better idea. Putting some Lemon in water is a natural diuretic. You may want to give this a try. Coffee is also, but even decaf affects my POTS so it may not be a great option. Take care, Rhonda

Morgan, I hope you can find some answers and some treatment with this new specialist. It took me 16 years to get a diagnosis. It helps to validate what we know is true. Rhonda

I hope you can find another doctor. You deserve better!! Rhonda

Melissa, You are in my thoughts an prayers. Sorry to hear you are having such a difficult time. Rhonda

I hope you are home and feeling better. Rhonda

Sorry you are having such a hard time at work. You really don't need this additional stress when you are ill. Rhonda

I worked with a physical therapist to help with my left sided weakness. I use the rubber tubbing a lot, because I can lay or sit down when using it. She also gave me a number of leg lift exercises I could do laying down. Good Luck. Rhonda

I will get tingling in my left hand with my neuropathy. I started going to a physical therapist because I could feel my left side getting weaker. She was able to track it for me. It helped so I did not feel like a crazy person. Neurological symptoms are very hard to describe. Mine can wax an wain. Hopefully it is nothing more than a pinched nerve. It may be a good idea to track your neurological symptoms, and see a neurologist if it does not go away. Rhonda

Have you been worked up for an immune deficiency? If you can find an immunologist in your area, you will probably get the most comprehensive work up. I know it helped me. I don't have an immune deficiency, but I do have an immune dysfunction and get lots of sinus infections. I find sucking on a cold ease table once a day helps. It only has 13mg of zinc, and does not make my stomach turn like zinc tablets do. I hope this helps. Rhonda

Studies have found evidence to suggest that EBV attacks the immune system and makes it dysfunction. It may be worth your time to have someone test your immune system to see how it is functioning. I would alway get a sore throat when I would flare up in the past and feel very sick like I did with Mono. Rhonda

I hope you start to feel better soon. Rhonda

I will wake up all night long with the shakes. I am also tacy at the time. I can get rest when I take clozanepam at night. If I don't I am exhausted the next morning. I find it is worse the week before my period. Not fun. Rhonda

I was completely healthy until I had Mono at age 24, then I was never the same. It took 16 years to be diagnosed with POTS, but I know I have had tachy issues for a long time. The tachycardia has increased with time. I do respond to immune therapy, so it triggered an immune system problem for me. I don't know if that helps. Rhonda

I have had issues with swallowing when my neuropathy is flaring up. In December the left side of my face became numb, but I remember thinking that my swallowing was worse. I started IVIg 3 weeks ago, and have noticed an improvement in my left side and my swallowing. The IVIg was rough. Spinal headaches for 1 week and a fever for 2 weeks. Now that I feel better, I can tell I am stronger. I hope you can get some answers. Rhonda

Welcome. This site has been a real blessing for me. Lots of great people. Rhonda

When I discribe the weakness and fatigue I think I have found a good analagy. I usually ask if they have ever had a bad case of the stomach flu. Then I and ask them to remeber how hard it is to move from the bathroom floor to the bed. Then I explain that my fatigue is like this, however it can last weeks and months, even years. I have had some family members who have been less than supportive over the years. I have found that they are more receptive to understanding my fatigue right after having a bad bug themselves. I hope this helps. Rhonda

Willows, Sorry to hear you are in so much pain. I get sever joint pain when given solumedrol. The only thing that has helped me was a sleep aid - Ambien. I was able to get about 3 hours of sleep and it made it a bit more bearable. Pain killers did not touch my pain because it is due to steroid neuropathy. I don't know if this will work for you, but it does help me. Wishing you less pain. Rhonda

I am glad to hear that you are feeling better. I hope the fevers are gone for good. They are not fun especially with POTS. Double not fun!!! Rhonda

LindaJoy, Sorry you are having such a hard time. I have neuropathy affecting the my left side. I also have a very slow digestive system. The immunologist I work with had a number of patients who's primary neuropathy symptome is stomach issues. I hope you can get some answers and some relief. Rhonda