[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

[mrsD]

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

[hopeful]

Originally Posted by mrsD

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

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

[mrsD]

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.

[Stillfighting]

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.

[hopeful]

Originally Posted by Stillfighting

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

[Checkmate]

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

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

[R182]

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

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.

[hopeful]

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.

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

[R182]

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

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