gslm
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December 24, 2013 at 4:06 am
Jim-LA, thank you for the information. Dr Burt’s Stem Cell program makes a lot of sense to me. I hope it becomes a standard treatment one day. If it passes phase 2, how long will it take to get FDA approval?
December 24, 2013 at 3:21 amGH, how long does it take to get from onset to the point of not walking? I worry I will be in a wheelchair by the end of the 4 months and by then it will be too much damage.
I am losing strength noticeably. I can still walk but tire easily. Everyday activities make me feel like i just ran a marathon.
My neurologist suspects CIDP mainly because of my post-vaccine onset and my symptoms all fit. Numbness, tingling, prickling and burning skin, muscle twitch and ache, weakness and shakes in both prox and distal, fatigue. All typical CIDP. None of my tests is conclusive.
Jim-LA, stevemckean, JohnQ and harryswope, thank you for sharing your experiences. They are very helpful to me. It is especially good to know follow-up IVIG doesn’t require 5 days, only 1 or 2.
December 23, 2013 at 9:30 pmIs it possible that in very early CIDP (one month into symptoms), a person’s EMG, NCS and Spinal tab are still all normal?
My doctor seems to think since mine are all inconclusive (borderline), he needs to wait for a repeat in 4 months to be sure. And he tells me even if I find a new neurologist they will do the same. I just feel waiting 4 months while my symptoms are progressing is unacceptable.
December 23, 2013 at 6:50 pmGH, you are right.
My symptoms sound like CIDP, and since my symptoms started mere weeks after the flu shot and flu shots seem to be linked to GBS/CIDP, I strongly suspect it. But my neurologist thinks the test results are not conclusive yet so no treatment. So frustrating.
December 23, 2013 at 4:36 pmBTW, my ANA is negative. Does it mean anything? Among ANA, NCS, EMG and spinal tab, which one is the most definitive? Also the fact my symptoms started a few weeks after a flu shot mean anything? Does flu shot cause any other type of neuropathy other than CIDP?
GH, thank you so much for your words. I have just made another appointment with another doctor who was recommended by Jim-La in another thread. But the earliest I can get in is end of January! I am in such a limbo state, which is so scary.
December 23, 2013 at 4:01 pmMy symptoms started shortly after a flu shot. At first only numbness and tingling of hands, feet, arms and legs. Then skin burning sensation and muscle twitches everywhere. Then muscle pain and soreness, feeling fatigues. Then muscle weakness, especially in arms and thighs so far. But calves and everywhere too. Just feeling sore and tired after even the most basic daily activities. The progression has sped up lately. Right now my hands are permanently numb and burning, and muscles constantly ache and twitch, and my arms and legs are wobbly and shaky 24/7.
NCS and EMG and Spinal tab were done a bit too early (I hadn’t had muscle weakness then) and they were all “inconclusive”. My neurologist is not familiar with CIDP, (he is more an MS guy) and he thinks it’s possibly CIDP but he wants to do repeat tests in 4 months to be sure. In the meantime, he will only give me pain medicine, nothing else. I am not sure waiting 4 months is a good idea!
December 23, 2013 at 3:29 pmThank you so much for your information.
I feel like I am in a nightmare that will never wake up.
Jim-LA, If you are in long term remission, how did you get into that remission? I understand you can never get into remission on IVIG or PE.
Has anyone tried high dose dexamethasone? Or even high dose cyclophosphamide? Do they possibly work?
What is your opinion of the stem cell transplant? Will it be available sometime in the future? I am just afraid it will be too late for me.
Thank you for your opinion.
December 23, 2013 at 1:47 amThank you very much!
