← Return to I feel like Physical Therapy is making small fiber neuropathy worse

Discussion
Comment receiving replies
@kklopfen

Question - I live in Houston, Texas and have been bounced around to doctors for what sounds like SFN. I have tingling and numbness in both feet, pain in my hands, some burning in one ear and tingling across one side of my face,some cramping in my feet and calves, etc. Is it worth flying to Mayo Clinic in Rochester, MN to get formally diagnosed and hopefully and treatment plan?? My internist says they are #1 in neurology and I should go. My only worry is that they'll just say take Lyrica, which I could just stay in Houston to hear. I'm hoping they will have some cutting edge treatment plan and I don't end up wasting my time and money. Has anyone gone there to be diagnosed and treated for this ? I heard someone say it can't really be treated if you don't know what caused it. Mine started 3 days after I had a simple procedure to have an amplazter occluder put in my heart to cover a hole. It was done through my groin like a stint. I suspected Plavix had something to do with it at the time, because my left arm went numb on day 3 of taking it after the procedure. I had the same thing happen when I took Leviquin for a sinus infection 2 years earlier and read that it could cause nerve damage and I got off of it and a few days later the numbness was gone. I thought maybe the Plavix was doing the same thing for some reason. However, my doctor refused to switch me to something else and after two weeks of a numb arm I told him I was not going to take any more and he finally changed me to Effient, which then pushed it to my feet. Finally, he just said I must not be able to tolerate it and just said take aspirin. I had hoped that my symptoms would've gone away, but two years later they have not and seem to be progressing. That is the only thing that I can think of that would've caused the SFN. Would that info. even be helpful in treating SFN? I am not overweight or have diabetes and so far have not tested positive for an autoimmune diseases, so I don't know what else could cause this??? Also, can SFN go into remission and how fast does it progress and does it always progress or could it just stay the way it is now? I'm 52 and thought I'd have another 20 years before ending up with some horrible disease:( I'm scared to think what I'm going to be like in another 5,10, 15 years! Would appreciate any information or advice. Thanks

Jump to this post


Replies to "Question - I live in Houston, Texas and have been bounced around to doctors for what..."

Have you had a brain MRI ? Mine is tomorrow and it will be my last test after EMG , neck and lumbar MRI ‘s and many blood test . They have to rules out MS and if it is not they will link it back to my neck surgery . I am doing PT , massage , Reiki to calm me down which has helped. I have it all over my body and makes me very sad as I am very fit 61 year old . I had my first cbd brownie and it helped me go to sleep . I was taking a few muscle relaxer ‘s and did not want to get addicted to those as they are addicting . I am on gabapentin time release called Horizant . One pill at night helps me not forget all day because it is not a good time if I do . I wish you peace and know there are a lot of us searching for answers!!

Hello @kklopfen I just want to say that I also live in the Houston area, have been bounced around to doctors for several years and still do not have a diagnosis after much genetic testing. My Neuromuscular doc has suggested Mayo in Rochester. Message me if you want to compare notes - perhaps we have both been tossed around among the same doctors.