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Rachel, John, etc. re: CCM – I read of Araim Pharma completing phase II of their clinical trials for their drug cibinetide which looks very promising for actually reversing neuropathy and regenerating nerves in conjunction with selective stem dell therapy. If you google cibinetide you will find lots of info. The use of CCM as a non-invasive form of SFN diagnosis is a welcome tool. My neurologist is affiliated with a large university hospital, I just wonder how selective the screening is. It would be good to know if my SFN has improved, worsened or if it remains the same. Rachel, I wonder if you would be a candidate for a clinical trial with this drug? Helen
Hi Lioness, I don’t know if a 2hr. test is necessary to enable a specialist to figure out if you have the type of vertigo caused by misplaced crystals. My gal had me lay down with my head to the side and slightly off the table, if my eyes started moving back and forth uncontrollably she was able to diagnose me. Next, by doing a few different head maneuvers she could tell where exactly the crystals were stuck and determine which direction and position would move them to. With me, it was not always the same ear or canal but i am happy it has not returned. I did experience it for about a year and often thought it was caused by the gabapentin along with other side effects which were temporary but I don’t know for sure. I did not have to do any exercises myself, after a visit with specialist I was fine until the next bout which was probably every 2-3 months.
I had experienced the vertigo also for about a year and after 2 unsuccessful visits to ENT’s was lucky enough to find a P/T who specialized in this disorder. Since there are 3 ear canals it is most important to know which one to work on and the movements depend on that otherwise the crystals can continue to move from one canal to another without alleviating the problem. My gal was a whiz and I have not experienced that awful vertigo since, although I do sometimes have some short lived dizziness but it is nothing in comparison.
I am still confused! It seems as if you John and Lioness are both saying you think one should supplement with B12 vitamins (not food) even if you are not deficient, according to your lab results which have shown to be of a normal range?That would suggest that B12 actually can benefit even when a deficiency was not the cause of neuropathy as is the case with some.I did read those articles among others but they did not really address my question. Thanks, Helen
so true but many articles state that most people derive enough B vits. from the food they eat; so should we be taking more even if our labs show a normal range? I’ve gotten the sense here that if you have a form of neuropathy you should be taking B12, so I have been confused as to whether or not supplementing actually can help if you have no deficiency which caused your problem. Helen
Hi James, I hope your body heals and the pinched nerve pain you’ve been experiencing is totally eliminated or at least decreased to a level managed by NSAIDS or other non-prescriptive pain med. Please keep us informed, we love success stories! Helen 😁