stevemckean
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November 4, 2013 at 6:54 am
Third infusion is now wearing off and it hell. IvIg works SO well for me! The relapse seems worse each time. I am at 4 week intervals. Want to go to 2 a different interval, say 2 or 3 weeks.
My question is about drugs to save the kidneys from damage. Imuran… I think that is what it is called… as I read about it, I see some pretty gnarly side effects. Any comment?
November 4, 2013 at 6:45 ammalfan-
Yes, doctors who know anything about cidp here in Hawaii are few apparently. The first one who diagnosed me was visiting from Serbia, then my PCP got sick and didn’t see my diagnoses. The working diagnoses came from Dr. Karnaze, also a temp nerologist with Kaiser. Try Dr. Stewart Pang, also at Kaiser(Oahu), through me he now knows about CIDP.
I had to complain all the way up the HMO bureaucracy ladder before I got any recognition, and I actually discovered CIDP on the web and sent the reference to a PCP who poo-poo it. Frustrating!
I’m not glad your mother has CIDP, but I am glad to know I’m not the only one here. I live on Maui. email me if you want a helping hand.
Best to you and mom
October 31, 2013 at 9:35 amRE: She told me if my symptoms progress or I don’t respond to IVIg then she’ll change the diagnosis to ALS.
Don’t think a diagnosis of ALS would be suggested in such an off-hand manner. She might suspect ALS, but once that diagnosis is given, it has to be 100% correct. ALS is fast progressing and you’ll know you have it if you have it. The weakness will be profound. I’ve had 5 neurologists… all visiting, as I live on an island in the middle of nowhere. ALS was explained to me in detail. I had all the symptoms and they got worse and worse the more I read about ALS on the internet.
CIDP- IvIg works for me to a degree. I am at present syncing the IgIv intervals to head off relapse. Foot drop will never recover. Right hand function will be limited forever. Breathing is problematic. I have recovered many of my sensory functions, bladder functions and my body-riveting fassticulations are subsiding.
good luck. Sstay off the ranting and rollicking medical forums dealing with neuropathy and ALS.
September 27, 2013 at 6:39 amIvIg is working for me… yahoo!
A zombie foot returned to the realm of the living today. We will see what happens on after my third infusion next month. My confidence in this treatment is high! I had CIDP problems for five years+ that was called diabetic neuropathy by medical professionals, but I knew, during all the time that a second disease was eating me up and violently spitting me out. I pretty much clawed my way out of the CIDP grave to get a competent neurologist to recognize it… Even then, it took 8 months to get IvIg treatment.
I find that mega doses of Vitamin D (50000 IU/wk) renew my energy level, as as does constant and vigorous exercise. Even when i was reduced to walking with two canes, then to crawling, I still pumped iron, then tinier iron, and swam and swam and swam.
August 29, 2013 at 6:58 amI get something that might be referred to as zingers, although, I think of them as waves of fast electrical energy zipping through my feet like waves. Yes, weird, I know. Anyone get these?
August 22, 2013 at 6:02 pmThe drop foot, over time, caused me severe gait & knee problems. Once I obtained the proper brace ($1200 through Kaiser, my cost $270)) all the associated problems ceased or diminished after two weeks. Although, some of the lower body problems I now associate with CIDP.
The loading dose of IvIg has produced many subtle changes in many muscles in my hands and feet. I am once again able to pick up small items like pills and pennies and pins. Shortness of breath still remains.
August 17, 2013 at 7:44 amThe day after the 4th infusion I had a severe headache and nausea. I also had the strange experience of my perceptions, thoughts drifting off to strange places; and perhaps a decrease in IQ, as someone else mentioned happened to them. I will ask my doctor for a slower infusion rate on infusion number 5 and for future infusions.
I hesitate to say I’ve had some very positive body sensations and movements (including bowel movements) because something happening so fast, and this beneficial, seems incredible and hard to believe. Like a hand or foot that has fallen asleep, my body seems to be slowly waking up. However, from reading this and other forums I realize this may not be a permanent solution and I’ll crash to previous levels of dysfunction and once again require IvIg therapies on a regular basis.
Regarding hydrating: many vitamin and mineral enhanced drinks are available and I’m wondering if they are beneficial? Is Pedi-a-lite, a newborn’s vitamin drink, of any value before, during and after IvIg sessions? Can you recommend other drinks?
I have a foot drop, but I have a small amount of nerve function in that foot. Is anyone in a similar situation and are you attempting to slowly rebuild muscles and function in that foot?
This video animation gives a view into the cell and its mechanisms.August 15, 2013 at 2:58 amThird infusion – no problems. I worked on my computer the entire time. One observation I have is that this therapy seems to enhance all my muscles. PN damaged muscles less so, but perhaps over time they will function better. Balance, my place in space and muscle reserve power seem to be back ago.
August 13, 2013 at 4:36 amFirst infusion, I did prepare for the worst, as I over hydrated and then had to roll the IV into the john 8-9 during the 4 hour procedure. Tylenol was give and I also asked for benadryl, which was given in an IV drip.
This was the first time the nurse had given IvIg for CIDP. Everything went well.
The IV needle was left in my vein, so swimming is definitely out. I felt only a slight nausea, a headache that was minor and quickly disappeared. I did however feel very fatigued and napped for two hours.
After I awoke, I then walked two miles in my backyard (I have a big yard).
If I had not looked into this forum and other resources, regarding the hydration and benyedrl, I would have most likely had a very different experience.
Preparing for infusion 2 tomorrow with the same plan.
Thanks
