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

Thank you for the update.

We have had some people here on IVIG... but not many.

If you search "IVIG" in our search engine those posts will be listed. If you do the search on the PN forum, the search will confine to that forum only. The search bar is on the upper right of the first page.

Improvement is good. Sometimes it takes a while. Go slowly on your exercise until you feel stronger, to protect yourself from falls. You can try some isometrics in bed. I learned this in physical therapy and it helps strengthen muscles and stretch with minimal risk.
One was a modified "walking" in bed. Lying flat flex the leg so your heel drags lightly on the bed. Bring it up and back down,
10 times on each side. Doing contraction, hold to a count of ten and release of the glute and thigh muscles in a sequence also helps while lying down to move blood and lymph around.
I always flex and relax my feet every night, since most of my PN foot pain comes then.
Perhaps you could ask for a PT referral? I also had some exercises PT supervised that strengthened lateral movements to help with balance.

example:
http://voices.yahoo.com/isometric-ex...s-1918762.html

You may want to contact the Nueropathy Foundation. The founder has had his condition reversed from this. I contacted him a couple of years ago and that seems to be their focus. he told me he went from not being able to walk to I guess full recovery. Of course he also said that after much testing they finally found some rare condition that was not easily found. I don't remember the details. They also assist in getting insurrance companies to pay for those expensive treatments.

Thaqnk you. I will give them a try. I appreciate the information. hopeful

Thanks for the suggestions I am going to try the isometrics and I think I will ask my Rheumo for PT referral. I also have a question for you. I remember you suggested awhile back using grape seed tablets. At the time I had started the R lipoic acid and wanted to do one thing at a time. I brought the grape seed but never started it. Can you tell me what it is used for I can't remember.
Hopeful

The grapeseed extract is an antioxidant free radical scavenger.

http://en.wikipedia.org/wiki/Grape_seed_extract

It seems to dampen allergic reactions for both my hubby and I, during allergy season. Some people on RSD forum found it helpful over the years to prevent RSD spread in the body.

This link gives new information about grapeseed extract's effects on liver metabolism of drugs:
http://www.webmd.com/vitamins-supple...%20%28GRAPE%29

I don't take it all the time, only when allergic symptoms are bothersome. Neither of us have ever had side effects from it.

I think getting some professional help from PT would be very beneficial for you. They can teach you stretching safely, and exercises for balance, and strengthening muscles in just a few short visits.

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

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

Hopeful, you might want to do some mild resistance machines for your legs. The leg presses, with slow mild weights, will build muscle faster than the aerobic machines, which are more for cardio. Don't put too much weight to start, and do only 5 or so reps to start. Have someone help you to begin if possible, who understands the leg presses. You lie on your back and push a plate and this is like squats but easier.

If you have some whey protein in a shake each day you do your gym, you might see some improvement faster.
The branched chain amino acids in the whey really help build lean muscle.

Hi Marie

I also get ivig every 3 weeks for small fiber neuronopathy/ganglionopathy.