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Anyone have the FGFR3 antibody gene?
Neuropathy | Last Active: Feb 5 7:16pm | Replies (149)Comment receiving replies
Hello, I just ran across this site after I started to research my husband's medical records to work on his disability. He also has the FGFR3 antibody. He had cisplatin for squamous cell throat cancer and now has Chemo-Induced Peripheral Neuropathy, Radiation-Induced Peripheral Neuropathy and Radiation-Induced Brachial Plexopathy which is progressing to his lower extremities and worsening over time. We live in St Louis and that's where he got tested for it.
Replies to "Hello, I just ran across this site after I started to research my husband's medical records..."
So John, have you ever tried the treatment using medical cannibus?
Darlia
I forgot to mention that I've had progressively more too tingling, shooting pain and numbness in my hands too.
Hi Darlia (@darlia) -- I have not tried the medical cannibus. I wouldn't qualify as a chronic pain patient. I have no pain with my neuropathy, just the numbness. I do have some pain with the polymyalgia rheumatica but the prednisone keeps it to a minimum and I'm hoping to be off of it in 3 months if my tapering plan is on schedule. I'm on 2 mgs currently and that seems to control the pain and stiffness.
I'm tagging Chris (@artscaping) who has discussed using medical cannibus to see if he can share his thoughts and experience with it.
John
My PN is similar to your symptoms. Let me know if you start taking this and if it really helps eliminate the numbness? Does anyone know if electronic therapy or laser therapy works?
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@kgoodwin9 Yes to all you said. One thing you should know is that that there over 1,000 mutations of Amyloidosis, a protein disorder in the body. Probably 2,000, but we don't even know all of them. They can be both/either systemic or localized, primary or secondary, hereditary or accidental, whatever. One good place to start is by reading the Amyloidosis pages on the AmyloidosisFoundation.Org, MayoClinic.Org, Alnylam.com, and NIH.Gov, and any others you can think of. My own seems to be a combination of hATTRwt, AL, ACys, and another. As for treatment, talk to Mayo and some of the pharmas. ARUP in Salt Lake City is also pretty good at testing. Have your doctor contact them and AlnylamAct.com. As for medicines for such as neuropathy, There is not much, but more are coming out right now. I just read about some of them. FDA has approved Patisiran. Gabapentin was worthless for me. I would suggest you read my Amyloidosis Dossier which you can download free from https://bit.Ly/1w7j4j8 I have found that writing up this Dossier has helped me understand my own disorder, which I apparently began to show signs of very early. I am now 77.