Welcome to the forum
Hi John,
Unfortunately, I don’t have any advice regarding the results you’ve received thus far, however, I wanted to welcome you to the forum.
Take care,
Tina
Welcome to the Forum
I am also fairly new to the diagnosis of IVIG (July 2010). I had a lot of inconclusive tests (lumbar puncture, numerous nerve conduction studies, MRIs of brain and back and neck, 40+ blood tests) done by various doctors, so my current neuro recommended a biopsy of the sural nerve (lower leg) and also biopsy some muscle in the area. I was so frustrated after four years of going to various doctors (including another neuro) and they could not figure it out. I hated not knowing what I had. You also begin to question your own sanity after a while. After I got the pathology report from my neuro I actually felt relieved to have CIDP. There was no doubt left when the pathology report arrived. Before the diagnosis I read a lot of medical stuff that was really scary. I decided at that point that I would try to keep a positive attitude. I am lucky that I have a lot of support from friends and family as well as colleagues at work. Yes, I still work full-time even though some days it is difficult to walk. But I keep on going and do as much as I can. My advice–treasure each day and be an advocate for your own health. Being part of this forum is helpful in learning more about CIDP and also it allows you to ventilate—and that is therapeutic. It is comforting to hear from others with similar problems. Always remember that CIDP symptoms and effective treatments vary with each of us. For example: my feet are numb all of the time, even when I lay down. I wish you the best.
Welcome to the Forum!!
[QUOTE=joccarter]……………But then in Jan of this year, 2010, another quick onset of acute symptoms very similar to 2003.
Multiple hospitalizations and relapses treated with IVIG. One doc says “relapsing GBS,” and one says CIDP. Will have nerve biopsy soon.
Regardless, I want my old body back.[/QUOTE]
Welcome to the forum, joccarter! I see you have been registered here a while and this is your first post. 🙂
Thanks for responding with your story!
I hope that you have been lurking here for a while, as it is a great support forum, for sharing and learning, both.
If you don’t mind saying, what state are located you in? It’s interesting where and why they do nerve biopsies. In my case, by the time I was actually at the “right” neurologist he “knew” my diagnosis even before EMG just from my long history (since 1996, – but most acutely over the previous 2 years prior to seeing him). I never had a nerve bx.
I also have always been told (by numerous neuros), that “GBS only happens once”…then it becomes CIDP and “there is no such thing as relapsing GBS”. Do you know how your neuro that told you this is coming up with the dx as opposed to the CIDP one? It will be interesting to see what is decided if you care to share or post anymore.
What type of treatment are you receiving now?
One thing we can all associate with….WE ALL want our old bodies back!! Many of us have missed out on the best years of our lives.
Hope to see around again 😀 ,
jdunk