Originally Posted by hopeful

Hi Everyone,
I haven't been on in the past few months. I started IVIG is the spring. I started with 1 treatment a month. I think it helped, I was sick for 3-4 days after but then had a pain level of 3-4 for about a week to 10 days which is great for me. They just recently increased the treatments to twice a month. They wanted to start me on another drug too but I refused.
I am wondering if anyone else here is getting IVIG. It would be wonderful to have a connection to someone who is. I see alot of people on the MG site who get it but I have not been dx'd with that.

Actually, as some of you now, I have had a positive nerve biopsy for small fiber neuropathy. Then went to Hopkins and they said possible sjogrens. I think I have had every blood test and catscan imagineable to no avail. I have seen neuro and rheum and I am considering immunologist or genetic testing. Does anyone know of someone who is good at diagnosing. I think this is all a guessing game for them. I was just going along with the "we may never know" answer from doctors but I think I really need to know. Any suggestions?

I have begun to feel weakness in my muscles but they told me it was because I did 20 minutes on the eliptical and treadmill instead of 15 mins each. I think that answer is nuts. By the way I went to the gym because I feel like I am really losing strength in my legs. I continue to work full time but don't know how I can keep it up.

Well sorry for the long note. Just looking for some support and someone who understands.
Thanks,
hopeful

Originally Posted by villier

Hi Hopeful

I also get IVIG every three weeks although I am dipping at two and I am back to square one the third week,on going fight with my neuro, my pain level is also about a 4 which is great and takes the cramps away completely(heaven) .

You mentioned Sjogrens have you had bloods, shirmer test and lip biopsy done? I have had bloods and schirmer done which came back negative although lip biopsy can be positive I get mine done next week.

I see you are taking Mrs D's advice on slowing down and taking things at a gentler pace, I have weakness in my legs and arms with added osteoarthritis I had to give up my job as it was to phyisical for me.

Anyone with PN knows exactly what you are going through so you are not alone, hope you get some answers soon keep us posted how you go.......Marie