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Sat, Nov 2 8:42pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

I have also heard so much recently about The Protocol. What is it, and where can I find information (blog?) that might be of help to me in my continued search for some answers to my progressive myelopathy?

Sat, Nov 2 8:29pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thank you so much. I shall seek and find!

Sat, Nov 2 4:26pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thanks. I have just started to investigate the John Barnes method of myofascial release for my progressive myelopathy. It looks promising – without throwing another prescription drug (complete with unwanted side effects) at this ongoing problem. Does anyone know if there is a mfr therapist at the Mayo Clinic – Rochester. MN?
One year ago a spinal angiogram and a PET scan of the body both were negative for an underlying etiology; two spinal taps also showed normal results. My latest MRI of the thoracic spine still shows the white line (a long segment of "signal abnomality") with no relief of constant numbness in lower extremities. Neurologist recommends a "steroid sparing agent" (this after a 5 month course of a 60mg daily regimen of prednisone) for a 6 month period: mycophenolate (CellCept). This drug comes with a long list of side effects. I do not want to go through another period of potentially seeing no benefits but experiencing numerous risks (this drug comes with a "black box warning.")
I am scheduled to see a PT at Mayo in a few weeks. I am hoping I can get one who knows the mfr therapy.
Any advice or other suggestions are more than welcome.
Thanks for listening.

Wed, Oct 30 5:56pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

I am more than willing to try turmeric as well as other
anitinflammatories. My leg numbness is progressively getting worse by the
weeks. My case seems to be unusual (diagnosed a year and half ago) in the
fact that I do not experience pain – only extreme numbness of my lower
exttemities. My once active lifestyle has been put on hold until I find
something that will help alleviate or at least minimize the this extreme
numbness. I am reluctant to go on another prescribed medication (CellCept
is what my neurologist wants me to go on next) as the side effects continue
to take their toll on my body. In addition to the turmeric, are there
other possible solutions dealing with my numbness? Thanks.

Wed, Oct 30 10:14am · Anyone here dealing with peripheral neuropathy? in Neuropathy

I have recently been diagnosed with a form of myelopathy (inflamation on the spine with no known cause). My symptoms have been persistant for the last 18 months (burning, tingling, and numbness in feet, legs, knees, thighs, buttocks, groin, waist area). Tried IV prednisone (8 weeks) and oral prednisone, 60 mg daily, ( 5 months.). Endured harsh side effects and currently weaning off the prednisone. No relief. Symptoms persist 24/7. Next up: mycophenolate(CellCept), another drug that suppresses the immune system followed by a long list of serious side effects, including the risk of skin cancer or lymphoma. Also comes with the FDA Black Box warning. Regular blood checks also required. This drug was designed to prevent rejection of transplanted organs, but evidently is an "off-label" use for fighting inflamation. Because of the severe side effects and other health risks associated with this drug, I am extremely hesitant to begin a regimen to help ease my symptoms. My quality of life has suffered greatly, and I am looking for alternatives. Any suggestions?