do you see a neurologist and/or rheumatologist small fiber neuropathy

Posted by albiet @albiet, Feb 10, 2020

im getting more and more troubled by what i am feeling. the past year and a half has passed me by. the only option i was given was to take additional drugs - either neurotin or lyrica and they both sound like the medicine would have worse side effects. the other option is to switch from what ive been on Imipramine, to cymbalta. Im confused.
i was thinking of seeing a rheumatologist but not sure if i should. does anyone here with SFN see a rheumatologist

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@rwinney

Hi Robin. I may have eventually come to tolerate these drugs but by no means am I happy about needing them. All so unfortunate. I wish you well and hope you are able to find what helps you.
Rachel

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Rachel, I hope they continue to help you! So far freezing in my tracks works I can’t flinch a muscle twitch or anything just freeze and it stops because it’s nerves

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@albiet

@healingone thank you. I will look for it

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I sent you the transcript for one of the videos and the Mayo description of the program.

I am unable to send the YouTube link.

I hope this helps.

Have a great day!

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@albiet

@healingone thank you. I will look for it

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You are very welcome.

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@healingone what we’re your issues prior to going to the program and how did it help. How long ago have you finished and are you still with reduced pain

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Before the program, I was non-functional.

I found out that I could self refer, naming all the multiple body systems challenges when I talked to registration.

The first doctor I saw at Mayo was an Internist. I ask her to put me through the mill and tell me all of the diagnoses I was dealing with and what I could do to to increase my quality of life. The Internist sent me to several specialists and a lot of testing. The specialists sent me for additional testing. In the end of my Jacksonville stay, I was diagnosed with Central Sensitization with Fibromyalgia.

Other diagnoses I have include: Chronic Pain Syndrome, Chronic Fatigue Syndrome, PTSD, Autism Spectrum disorder, Depressive Disorder, Generalized Anxiety Disorder, ADHD, Obstructive Sleep Apnea, Hashimotos, Hypothyroidism, Diabetic Kidney Disease, Type 2 Diabetes, Peripheral Neuropthy, Vitamin D deficiency, Mild Cognitive Impairment, Chronic Active Epstein Barr, Chronic Inflammation.

I attended the Pain and Rehabilitation Program over 2 years ago and my challenges are still lessened.

I had and extremely good experience at Mayo and recommend it to everyone.

Have a great day!

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@healingone thank you for the detailed explanation. Did you see an internist the first day of the program or did you first go there for medical visits and then go back for the program? If you went prior, how long did all the visits take?

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Some others I thought would be interested in participating in this discussion about whether you see a neurologist or rheumatologist for small fiber neuropathy are @artscaping @danielad @danielad @grahamb @jeffrapp @cindy62.

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@albiet

@healingone thank you for the detailed explanation. Did you see an internist the first day of the program or did you first go there for medical visits and then go back for the program? If you went prior, how long did all the visits take?

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I had my first appointment on a September 20th.

I had taken my sister for appointments and stayed with her in Jacksonville. She started the PRP(Pain and Rehabilitation Program) a week before me. I graduated the PRP October 27.

I think I came home 4 times by choice.
At that time, Jacksonville was 10,000 times more pleasant than DV at home.

There were several days only my sister went to Mayo. We were off on weekends and a few days we evacuated for a Hurricane.

Mayo was very accommodating pushing my appointments through before my deductible year ran out.

I was amazed how people in wheelchairs and on walkers had a steady gate when they completed the PRP.

Have a great day!

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@lisalucier

Some others I thought would be interested in participating in this discussion about whether you see a neurologist or rheumatologist for small fiber neuropathy are @artscaping @danielad @danielad @grahamb @jeffrapp @cindy62.

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Good morning Lisa. I found a great neurologist in CA at Eisenhower. He was at the top of his game, very caring and focused on shared decision making. He referred me to a rheumatologist to rule out autoimmune issues. I only have a PCP and Connect now. There are evidently no neurologists in the area right now who she feels comfortable referring. I was not accepted at Mayo because everything that can be done for SFN (small fiber neuropathy) is being done. Chris

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@lisalucier

Some others I thought would be interested in participating in this discussion about whether you see a neurologist or rheumatologist for small fiber neuropathy are @artscaping @danielad @danielad @grahamb @jeffrapp @cindy62.

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@lisalucier thank you. Hoping to see some replies.

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