Any luck with this treatment and how long after did you see results
Yes! After I did not respond to some high doses of IVIG, they concluded that it must be ALS. Since by then I was completely immobile from the neck down, they expected the next muscles to quit would be the breathing and swallowing muscles and that would be it.
To Mayo Clinic for a second opinion... within several days, they began a series of plasma exchanges, 7 total, every other day. The worst part was that my muscle tone in my arms was so far gone that there was no support for the blood vessels. They simply collapsed when the machine tried to draw blood. As a result, they had to put a two-way tube down my jugular toward the heart. One side for blood going out, and one side for blood coming back in with new bottled plasma instead of my polluted plasma. Worked out ok. The process is virtually painless, you may just get sleepy.
It did work wonders for me. Within a few days I stopped getting worse. That was a big deal because for seven months, March (first symptoms) to late September (plasmapheresis) I got weaker every single day.(That is a very scary thing!) Once the seven plasma exchanges were done, I started on 2000mg of cellcept and 1000mg of prednisone via iv. The Prednisone was quickly tapered down after the first few days, at 20mg/day now-8 months later, still on 2000mg of cellcept.
I can't claim to be back to normal yet, but I am so much better off. I'm able to function around the house, lift weights, and even do some gardening and mowing. I am determined to keep regaining my strenght and endurance.
I believe my neurologist thinks more credit has to go to the cellcept and prednisone, but the plasmapheresis played a big part in stopping the damage and allowing the beginning of recovery.
Hope this helps. Sorry for rambling, but since this condition affect us all in so many different ways, maybe you'll see some parallels in our cases. Best wishes!
I've been on prednisone for quite a while and have only had negative results, I was on IVIg for a while, but they found it made my IPF worse. Tried Immuran and it was a bust. Then I was put on CellCept and a short time after that, Plasmapheresis. My legs seem to be getting stronger. I can get up without pushing and can stand for longer periods of time without tiring, bunt I distill can't walk. No sensation coming from the feet. My concern is that because the CellCept and Plasmaphereis were started at the same time, is one doing something and the other, not doing anything? We won't know which is causing the strength, or maybe it's the two working together.
I also had a good deal of pain, initially. Mostly like bee stings or needle sticks. About 2 months ago the pains were in the same general locations, but increased by a factor of (at least) 100. It felt like someone was drilling into me with a power drill. My Neuro gave me a couple of months worth of Gabapentin but that did nothing. Based on my reading, I'm wondering if the doseage got high enough? I was on 600mg/day, 300 in am, 300 in pm. I'm now on Cymbalta (3 days), so I'll have to wait a while to see if it helps.
Just curious, but has anyone else experienced severe neck pain or cramping? I've had it for a couple of months now, and it's as bad as, or worse than the other pains. My Neuro said she will check it out at my next appointment, next month.
My mom is 60 yrs old had surgery total colectomy 3 weeks after starting noticing things going down hill. This was Jan 2013 by Feb she was wheel chair bound and now basically can do nothing for herself. Praise God we are now at one of the BEST hospitals in the country and we have done one 5 day regimen of IVIG. That was 1 week ago. She had a little feeling come back in her big toes, up her calves, and her lips. But no real dramatic change. She's is now having shortness of breath which they have said are from CIDP. She is on oxygen and it seems to be getting better. We did our 1st treatment of plasma pheresis last friday. This week she has 5 more. My prayer is that this will work! I realize she has a long hard road ahead but she is a strong God fearing woman with lots of support!
Dawn, you said "I realize she has a long hard road ahead but she is a strong God fearing woman with lots of support!"
in my experience, this can make a huge difference in her recovery.She is very fortunate to have strong faith and a daughter like you to help her get through.
Thank you! She has an awesome husband (my daddy) a wonderful son, son in law, daughter in law, 6 grand children, extended family, church family & friends! We are blessed beyond measure that’s for sure !