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Originally Posted by June89  Hi LasVegasgirl I have tried IVIG. The first day I was nervous. The nurses were awesome & explained everything to me. I was in a room with many other patients. Some infusions took 8 hours and others took 4 hours. You sit in a lounger type chair that reclines, when your IVIG comes they set u up just like a IV . I also got benadryl and something else to settle me and then they control the rate . A first you go slow to see how u handle it. Some people get hives, problems breathing, stomach pains etc.. I was there 8 hours the first day and the second day. Then the next week I took about 6 hours as they increased the drip rate. I was then put on hold as our goverment has made changes who can have this as it is $$$. The IVIG helped my hands not my feet. Now I am on Imuran to supress my immune system-5 weeks now..I feel no different in regards to pain. I also saw my rheumotologist today & he is running his own tests...as he feels there is a reason why I have this. He is interested in my blood work. Take care and don't be afraid. June |
Hi June,
That is a shame that they put it on hold. Does that mean you could not finish the infusion? If that is the case, I wonder if you had been able to finish the infusions that it would have also helped your feet.
My regular doctor is running a lot of blood work. Even an immune system work up which I have never had done. However, they did not take enough blood to run all the tests so need to go back in.
Tonight I have a mri on my lumbar spine and tomorrow morning another nerve conductor test with a new neuro. He is not so sure that I have neuropathy and thinks maybe back problems causing all my burning, aching pain in legs. He hasn't addressed all the pain in both of my feet.
I have been doing my own research on my thigh pain and found Meralgia Paresthetica (burning thigh pain) that I need to read more about and print for this neuro. It can be caused by MS. You have to be your own advocate because doctors some times have tunnel vision....Lol!
I am so happy that your Rheumy doctor is going to try and find what is causing all of your issues. My old neuro said I had neuropathy and sent me to a pain specialist. That was it for her. Not until I started reading, did I find there are different types of neuropathy and reasons why you have it. I almost gave up and said, okay, just live with it. But you should at least know what you have and what you are dealing with.
Keep us posted June. I love your name. It is my mom's name.
