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is this small fiber neuropathy or something else?

Started by trc1962, February 01, 2023, 06:58:52 PM

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Back again and wishing everyone well tonight. I am one of the people who shows no blood markers at all, just the lip biopsy, which was positive. I have a vascular type of neuropathy. I have dealt with neuropathy, the burning kind as well as the one that eventually caused weakness. After the covid vaccine I developed small fiber neuropathy, which responded to prednisone and eventually it quieted down. This flare causes pain in my foot, leg and knee and when it's bad it is hard to walk as it stops my knee from working right. I am back on prednisone 10 mg for 7 days and it helps so much, but it isn't a long-term answer. I even lost the flu like feeling with the prednisone and could work well. I take mycophenolate sodium and it helps, I think. Azathioprine was a miracle for 8 years, no flares! It eventually bothered my liver enzymes so had to stop it. Thanks for any input, you guys have experienced so much and have good insight! I need a neurologist maybe, but doubt my rheumatologist would refer me.


I'm sorry that you are having so much trouble with this again. Do you have another doctor who could refer you. Sometimes even a friends name can be mentioned who goes to the particular doctor and it helps. I had that happen to me and it worked out great.(For a gyn many years ago :D )

Also, if you have a University in a close enough proximity the chances of getting a good neurologist are usually pretty great. Many years ago I was beyond desperate and I called a line that I got from a big hospital that would give me the name of specialists. I just called the main hospital line and explained my need and they transferred me to this line that would find doctors for you. I would mention that you need one specializing in neuropathy and esp. small fiber neuropathy. In my case this special phone line gave me the name of a clinic and specialist and I made an appointment and have gone there for 24 years. Evenwhen we are discouraged we sometimes can luck out in our search.

I have gotten on the computer and searched a larger designated area for docs and then read their information and reviews. Have found a few losers but eventually find a good doc. It takes so much patience and perseverance finding a new doc. I seldom depend on many of my doctors for a reference. I have 2 doctors who have proven to be cooperative and encouraging. It only takes one doctor who can help or even a friend or an acquaintance.  Every time we see a doctor we are opening up another area where we can search.

Don't be afraid to pick a doctor on line and call. You know...we are taking as much of a chance with an unknown doctor as we are with someone that we are referred to. I had one referred neurologist who was a bummer and I contained myself not to walk out. He even bad mouthed my current doctor which is a no-no in my book.

I know it is hard doing this. I moved in 2021 and I still have not replaced my neurologist and will see a third one this March.....who I found on line and within 40 miles. Also, am still looking for about 2-3 other specialist. It is really time consuming...especially when your primary is wanting you to see a specialist but she doesn't know one in the area. This is causing me to look in a larger area. Sometimes specialists are hard to come by. I have noticed that many doctors will have "accepting new patients" listed on line.

Sorry I can't help you more but hang in there and make the first move as it may just be the you do need more attention from the way it sounds. Good luck. meirish


Thank you for your encouraging reply, it's appreciated. I do like a couple of doctors at the Univ of Washington in Seattle as they treat sjogrens and I eventually got my primary to refer me there. Sadly they informed me they were refusing my request as I already had adequate rheumatological care, sounds like my primary "sort" of referred me. It is hard to get referals from Spokane out of the area as doctors are very concerned about keeping care local. I will continue to look for help out of the area and I will be persistent. Happy (soon) Friday to us all.


I find that Spokane "keeping" the medical treatment local is rather disturbing. I am rather aggressive and would just keep on trying to get a second opinion from another doctor if I could. It is legal and acceptable to do that. Especially when  you are suffering and not getting help from the present doctor.

I know I don't know your medical circumstances in your area but if a doctor is "questionably" trying to prevent you from getting a second opinion I think I would be looking for another doctor. My opinion. Most doctors are very accommodating about getting a second opinion. When you see the second doctor for an opinion you can also mention that you want his results sent to your regular doctor with the idea that your regular doctor would discuss this with you and try to accommodate the new diagnosis/treatment. If you want a new doctor just ask the second opinion doc if he would take you as a new patient.

I have been blackballed by some famous doctors and clinics in my state over the years. One doctor told me I would be "hard pressed to find another doctor in the state of Minnesota" and told me to go to Iowa. My hubby and I cried all the way home and hubby said "I guess you are just going to have to die". I said "no way cause I wanted to find out what they were going to put on my death certificate".

I found more doctors and eventually found a couple doctors who diagnosed me with my 5 autoimmune diseases that the rest of them missed. So, if you are suffering and think you need a second opinion maybe you could find someone who could go with you and "help advocate" for you. Just some suggestions. Take care and keep us updated on how you are doing. meirish


Thank you meirish for your suggestions. I am a persistent person and I will look at any options for getting refered for a second opinion. I will update when I have more information. Thank you.