Reply To: CIDP and facial/mouth numbness

July 11, 2021 at 8:53 am

Hi Cowsarekillingme

When you are talking about the spinal inflammation here is what I did:

– Cold showers in a thick stream running down the spine from the top of the head or neck down. You can also use a waterhose on low volume

– some days I put 5k Ice in a bathtub plus 20 or 30 liters of water and lay in it for 20 min.

– I had the best results from ice treatments directly applied to my back. Cut open a frozen bottle of water then use the block to gently slide the block up and down the spine but not too high in the heart area. Of course you need someone to apply it for you…

– It is an inflammation so any medications to reduce inflammation help as in prednisone (short term) or Curcumin. Also consider diet changes and cutting out sugar and carbs as much as you can. Some oils like fishoil and so on also assist to reduce inflammation.

– check out the motivationaldoc on youtube he has a few recommendations to reduce inflammation

– I am using a medication called Piracetam 800mg. It was first prescribed to me by a Thai neurologist and I was on 3 a day. I was not feeling any progression during the time I took the medication and an actual improvement from my starting symptoms. When I ran out of the meds the progression started. Since I now (2 1/2 years later) started taking one a day again the progression mysteriously stopped and my spine started cooling down. Its ok now since about 2 months and my spinal inflammation stopped. Not sure if it was coincidence.

I cannot say for sure this is caused by the piracetam or not but had it happen twice that it helped. I have to say my observation is no medical proof by any means and I would not want to give anybody false hopes. I do find however it would warrant further research. Piracetam is prescribed in Thailand and perhaps in some other countries for a variety of reasons, in my case it was for neuropathy symptoms and it worked for me. I read online it is used up to several thousand mg a day which I find is an overkill. 8oomg a day do the trick for me at the moment.

I recommend to see a number of specialists and not only rely on the first one. In my last MRI a small fistula was discovered in my spinal canal which could also have something to do with it.

In your case it may be worth having a look at Transverse Myelytis as well.

All the best and let us know how you go.

Kind Regards