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Old 03-25-2015, 09:25 PM #11
northerngal northerngal is offline
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That is fine Beatle, I put it on here because I wanted others opinions.
I will come back here with any results. I am optimistic and hopeful, but also realistic.
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Old 03-25-2015, 09:26 PM #12
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Originally Posted by northerngal View Post
No, my CIDP started with tingling and vibrating. The weakness came after.
It is not typical cidp, because that usually includes proximal weakness. All of the doctors I have seen agree it's some sort of acquired inflammatory neuropathy or "atypical cidp".
I have had treatments with prednisone, IVIG, plasma exchange and rituxin. I have been treatment free since August of 2013. I really don't know 100% whether it just stopped progressing or whether there was an immune attack and the treatments put it out.
Either way the nerves are not regenerating on their own. so I'm hoping this stem cell therapy will help.
Just wondering when the weakness and numbness began as it might indicate how long the nerves have been damaged. How long did you have just the tingling/vibrating symptoms for?

Also, are you saying that you haven't progressed since Aug 2013? That sounds like it was put out some how.
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Old 03-25-2015, 09:32 PM #13
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Vibrating and tingling went on for about a year before weakness started. weakness progressed slowly. I started using afo's for the weakness 2 years ago. Everything has stayed the same for the past few years.
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Old 03-25-2015, 09:37 PM #14
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sorry--I didn't read your question right the first time.
I stopped all treatment in August of 2013. I was on a 3 week IVIG regiman at that time. the only real way to know if I needed it anymore was to stop and see what happened.
I had already stopped progressing prior to that.
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Old 03-25-2015, 09:40 PM #15
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Vibrating and tingling went on for about a year before weakness started. weakness progressed slowly. I started using afo's for the weakness 2 years ago. Everything has stayed the same for the past few years.
What about the numbness? When did that start. Hopefully some of these nerves get regenerated.

I think you said you never had the pain/burning right? Also, only legs, no hands/arms?
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Old 03-25-2015, 09:49 PM #16
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yes, only my lower legs are affected.
Upper legs,hands, arms, and proximal are all unaffected.
I have had the numbness for 3 years. That also progressed slowly. Not sure if you have numbness or are familiar with it, but it's very strange. The numbness is in my feet, stops at the ankles, yet I can feel If someone touches my feet, I can feel the pinprick and vibrating tool that the neurologists use.
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Old 03-25-2015, 10:32 PM #17
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yes, only my lower legs are affected.
Upper legs,hands, arms, and proximal are all unaffected.
I have had the numbness for 3 years. That also progressed slowly. Not sure if you have numbness or are familiar with it, but it's very strange. The numbness is in my feet, stops at the ankles, yet I can feel If someone touches my feet, I can feel the pinprick and vibrating tool that the neurologists use.
Numbness is very subjective term to patients. To some it means total sensory loss and to others it means it just feels numb but without sensory loss. And anything in between.

https://www.dartmouth.edu/~dons/part_2/chapter_13.html

Do you have trouble feeling or does it just feel numb?
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Old 03-26-2015, 03:56 PM #18
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Good article My feet FEEL numb, but I still have sensory function. If I step on something I feel it.
My worst symptom from the neuropathy is the weakness. So it's possible, what I'm feeling as numbness, is the result of weakness/muscle loss. It causes the feet to have a heavy floppy feeling to them.
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Old 03-26-2015, 07:59 PM #19
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Default Link to a previous NT stem cell thread
http://neurotalk.psychcentral.com/thread205788.html
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Old 03-26-2015, 09:16 PM #20
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Thanks for this.....I had forgot about this thread. The place I'm going through is the one mentioned by Baba.
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