← Return to Essential thrombocythemia

Discussion

Essential thrombocythemia

Blood Cancers & Disorders | Last Active: Oct 16 9:36am | Replies (142)

Comment receiving replies
@colleenyoung

@mjpm2406, you might benefit from joining the discussions in the Neuropathy group https://connect.mayoclinic.org/group/neuropathy/

In particular this discussion:
- Neuropathy Pain at Night: What helps? https://connect.mayoclinic.org/discussion/night-pain-2/

Jump to this post


Replies to "@mjpm2406, you might benefit from joining the discussions in the Neuropathy group https://connect.mayoclinic.org/group/neuropathy/ In particular this..."

Actually NOTHING. The Gabapentin never really worked. I was at Stony Brook Neurology (Stony Brook University Hospital) on Tuesday and saw a Neurologist who specializes in Peripheral Neuropathies. While I was there my legs started to spasm which is a good thing because the Neurologist was able to see my major "symptom." She did order several genetics tests which should happen early next week. She ordered one for CMT and HSN. Not sure what the second genetic test is but I assume its for MS and other similar disease that strip away the nerve coverings. These tests are simple swab tests much like the genetic tests people get when they do Hereditary/Ancestry testing. Apparently, genetics testing has come a long way since the earlier blood tests that were very expensive. I did have a genetics test done at the VA Hospital about three (3) years ago for CMT but the VA only looked at 24 genes. The Stony Brook Neurologist said that test was "garbage" because there are over 80 known gene mutations that cause CMT. I feel this Neurologist is determined to find out what is actually causing my neuropathy.