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hypotemusea (@hypotemusea)

Small Fiber Neuropathy and genetic testing?

Neuropathy | Last Active: Oct 17, 2021 | Replies (39)

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Well, she might not like it (that you sleep in a recliner) but it's not that uncommon, I have heard a few other people with neuropathy mention being more comfortable sleeping on one. Sleep is SO IMPORTANT that wherever you can get the best rest is exactly where you should sleep IMO, whether a recliner, the floor or a park bench.

If you do not use any opioids for your pain you might want to consider trying low dose naltrexone (LDN), have you heard of it? There is a discussion on Connect linked here: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/?utm_campaign=search

It's to be taken at night I think, and involves getting your body to produce more endorphins, which would help pain theoretically. I think some people have had good luck with it (and some have not, of course). My wife is going to be starting it soon I believe. She has the prescription here at home waiting to be started but is waiting to get through trying one or two other things first so as not to be confused as to which effects to attribute to which drug or supplement. Just thought I'd pass that along since you are having so much trouble at night with pain.

Best, Hank

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Replies to "@mjpm2406 Well, she might not like it (that you sleep in a recliner) but it's not..."

I have an appointment at Weil Cornell in Manhattan with a Medical Geneticist on October 26th so I'll mention LDN to her. I was recently diagnosed with Type 4 SMA so now my 4 adult children need to be tested to see if they are carriers of the SMN1 gene mutation. If any of them are their children will then have to be tested. I hope the SMN1 gene mutation ends with me. As far as I know, no one in my family has ever had SMA. It never ends. I have had CMT4B for many years as well as MDS/MPN-RS-T since late 2018. The MDS thing seems to be OK for now. On Hydoxy and my blood counts are within of near the normal range. The CMT thing runs in my family big time. It spares no one on my mother's side of the family. The SMA thing just recently surfaced following a genetic test which the geneticist ordered to see if she could identify a gene mutation that was causing my recent issues with PN. The geneticist wasn't expecting SMA because 95% of SMA patients are children. Further genetic testing is needed to rule out or identify any other neuromuscular gene mutations. Lucky me. Three extremely rare disorders. Almost like hitting lotto. Thanks for the suggestion for LDH.

Regards, Marty