Small Fiber Neuropathy discouraged

Thanks for the reply over here in uk we can't get to talk to my neurologist as NHS free ,so there is no one to report the side affects to except my GP how i have told i am going for full head sinus MRI 14th NOV 22 took 6 month to arranged and this was down as urgent referral ,some days like today i feel ok have my friends and family if i need support but i tend to keep things to myself even from GP had capital tunnel syndrome for over a yr usually last few months my luna nerve went for 5 months ,your funny bone so imagine having that sock feeling for 5 months was bad as said thanks for reply

would be a good idea if i was told i would have withdrawal i would have lived with the nerve pain

thanks for your reply today i feel a lot better i was so strange ,but it is defo down to Gabapentin just strange how theses tablets can cause so munch grief ps have been in touch with GP

Very often… I tend to think like John on this one. I had “things” before the years I ever had this sudden onset of PN, and I’d get them treated. We all are trying to manage our symptoms regardless of cause, and for me, cure the things that might be able to. But it’s hard, because it is easy for other specialists to take something and say it “COULD” be related to the neuropathy, and therefore decide not to do anything. We have to be proactive if we think it might not be and haven’t heard of many others having the same symptoms. I had a doctor accept a swollen lymph node and want to “watch” it, but I pushed for biopsy and sure enough it was cancer, not PN. And it was curable, not just “treatable “, so I got that cured. Vision problem? Yes, and it was film that developed after cataract surgery, a somewhat normal occurrence, and with a simple laser follow up I can see clearly again! That sounds extreme, but we can’t fear double-checking anything odd if we’re not convinced it can all just be lumped into Neuropathy, especially if there are pieces of our lives that can be made easier on us while we do our best to manage the things that can’t be cured.

Thanks for your response. I can work with the information I get from this group!! I have had no Doctor that is really interested in my PN. I have tried a few and get a pill or an "arch support", but nothing really helpful in 6 years. I finally asked a very reliable Sports Doctor if she knew of a reliable Neurologist in our area. She said, "Sorry, not near us." So, in my case, I have turned to this group and have gotten very good, caring answers. I cannot drive far, so i appreciate every response I get here! I just mentioned that because most folks say, "work with your Medical Doctor(s). " Thank God for this group!!

I want to believe the majority of doctors are good and do want to partner with us. I do wish we didn’t have to work so hard to advocate for ourselves sometimes. I do believe neuropathy has caused my foot/toe problems, and I was very disappointed my (previous) neurologist didn’t understand I wanted professional help with my gait and step so I could maintain or improve my ability to walk while living with neuropathy. This doctor made me feel that life is about “Survival of the Fittest” and that as a person doomed already with PN, medical care and resources shouldn’t be wasted on me! This group helped tremendously with ideas and inexpensive Amazon products to help with my feet and toes. I also found a good Podiatrist on my own to help understand how I’m fighting to stay active and to help me. Obviously I have a new Neurologist as well who understands we’re a “team” working together. Then my PCP told me my extraordinary hair loss and constant headache was just unfortunate with neuropathy, the stress associated with it, and hormones/age at then 55yrs. She added I shouldn’t even be concerned because I had a full head of thick hair and I have nothing to worry about! I insisted on having Iron tested with the standard bloodwork that visit. Very low Iron, anemia. That we drilled down to find other non-neuropathy issue. In this case. A simple Iron vitamin and focusing on that part of diet. Headaches are gone, and my hair is back to its thick unruly mess, and I’m not clogging my bathroom sink and shower drains. I’m sorry we have to fight as hard as we do. Many many parts of this neuropathy is what it is, and doctors can’t change it, but we know our bodies, and if we have ideas, we need to make sure they consider them. And for coping and practical experience, ideas, and tools to live with, we’ve got this great forum!

Debbie - I've posted before my axonal sensory motor PN and my balance is getting worse about 15% in last 18 months. Your comment about making things easier and do our best to manage things that can't be cured I think is the key and I'm glad you brought it to the surface. I am in PT as of a week or so ago and working on balance therapy. Any improvement on balance can improve self-confidence and for me that is vital. I have fallen a few times and that isn't fun. Fortunately, no harm except for my confidence. I will not give up in trying to improve in areas where I can. I'll be happy to take any small improvement. Ed

FYI - my not-so-funny bone never quit, and they finally did EMG that showed it was entrapped, and only surgery would help (and it did!)

Hello @graysea, Thank you for the private message. It's been a long time since you last posted in October 2022. I thought I would post a reply in the discussion you started last year here so that other members may also be able to respond and offer thoughts or suggestions:
--- Small Fiber Neuropathy discouraged: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-discouraged/.

I am so sorry to hear that your symptoms have worsened. I know it can't be easy for you. You mentioned that the doctors are unable to control the pain in your legs and you pace and are in pain between med times for your akathisia. Are you able to seek help at a teaching hospital or major health facility near you?

Everyone has given up. They just gave up.