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 Checkmate

I am receiving IVIG treatments every 3 weeks for CIDP. Which is a demyelinating polyneuropathy. The major issue for me is the relentless tireness I feel at doing the smallest of chores. It seems to help some. I've had this for 3 years before just recently being diagnosed with it. They thought I had CRPS or RSD but my EMG showed slow nerve conduction. I have an appointment with the Mayo clinic. I don't know if this sounds anything like you have or not.

Wish you the best of luck

Originally Posted by R182

I haven't been on here for quite a while. Originally thought I had only PN but since diagnosed with CIDP. Prednisone initially was encouraging but every time I tried to wean off it I regressed. Starting IVIG on Monday. I hope I respond favorably to it. I will let everyone know how it goes.

Originally Posted by hopeful

Hi R182,
Good luck on Monday. I hope it goes well for you. Keep me posted. I pray it helps you. Can you tell me how you where diagnosed with CIDP?
hopeful

Originally Posted by R182

My GP and Neurologist, after basic initial blood testing, thought it was PN. After about 8 months I noticed a loss of strength in my lower legs. Since I ride both road bikes and mountain bikes, I am very aware of my fitness level and how fast I ride up hills, etc. Long story, shortened, after my GP and Neurologist were a little stumped, and I requested further testing, I went to another specialist who did an EMG, thorough manual strength test in all muscle groups, spinal tap, and more specific blood tests. I also had an MRI on my lower back.

Results came back with an elevated protein level in CSF, and along with the strength tests (being more weak in certain areas and lacking reflexes) the doctor was pretty sure it was CIDP. I say pretty sure because, as you probably know, these things can be very tricky to diagnose. There are a lot more autoimmune conditions than I realized, which doesn't make me feel very good nor do I wish on anyone.

So, since I can't stay on a high dose of prednisone (60mg daily) we are trying the IVIG. We will evaluate and go from there. I did listen to a doctor from John Hopkins and he diagnosed in exactly the same way as my specialist. Apparently, there also is a doctor at California Pacific Medical Center in SF that has done quite a bit of research on CIDP and similar autoimmune conditions so that is a place you might look into. I can probably get his name if you are interested.

Rich

Originally Posted by Nervous1

Hi Hopeful,

I am having a lot of trouble getting IVIG approved by the insurance due to incompetent office staff. Hopefully I will start IVIG this week or next week.
As soon as I know something I will let you know.

--nervous1

Originally Posted by hopeful

Hi Rich, I live in PA so I really couldn't afford to go out to California. I did look up CIDP and said to my husband the symptoms really do seem to be what I have. My neuro has told me several times though that my reflects are somewhat hyper. I don't know if that would rule out CIDP. What type of specialist gave you the dx?
I agree with you I would not wish this on anyone. I also was shock to learn how many autoimmune disease there actually are.
Thanks,
Kim