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

@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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I have seen several specialists for a rainbow of illnesses. A cardiologist for tachycardia, neurologists, a pain specialist, a pain therapist, a speech therapist, an ophthalmologist, an ENT, a nasopharyngeal specialist, a gastroenterologist, a urologist, psychiatrist and a few orthopedists. Right now I'm actively working with my PCP, urologist, pain specialist, orthopedist, and ophthalmologist.

Any one of these doctors can prescribe medications, but once I've started a medication, my PCP takes over the prescribing. Of course, all of them know what medications I am taking.

Jim

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@rwinney

It's a mixed bag between my PCP, Neurologist and rarely Pain Management.

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What does your neurologist do for you? I went to two local ones, who did little more than diagnose my neuropathy. Since then, I have only seen a pain management doctor and the Podiatrist that first helped me. Neuropathy toes to thighs and fingers. Thanks

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@dckuke

What does your neurologist do for you? I went to two local ones, who did little more than diagnose my neuropathy. Since then, I have only seen a pain management doctor and the Podiatrist that first helped me. Neuropathy toes to thighs and fingers. Thanks

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Hello there. My neurologist has made it clear that there are "too many cooks stirring the pot". His words not mine. I was thinking that he who diagnoses and understands my disease of SFPN, would be the most qualified to prescribe. Wrong. Truth is, that's not how it works. I wish Drs would plainly state criteria up front. As a sick, confused and sometimes depressed person who is just hanging on to hope, of course I'm looking for this man to save the day. Unfortunately, I have learned otherwise by his dismissive rudeness.

So to answer your question…PCP and PM are who should or will follow up on a treatment plan. My Neuro only treats my migraines with botox injections, suggests Apherisis treatments performed at hospitals…you know, the BIG stuff. I don't believe they have time for the small stuff. He also orders massive blood work for me periodically if and when it's time for a look.

Hope this has helped you and best wishes for a productive treatment plan going forward.

Rachel

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@dckuke

What does your neurologist do for you? I went to two local ones, who did little more than diagnose my neuropathy. Since then, I have only seen a pain management doctor and the Podiatrist that first helped me. Neuropathy toes to thighs and fingers. Thanks

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@dckuke My neurologist has done a number of tests, run me through a bunch of medications looking for one that would treat my pain, referred me to other specialists and explained a lot of things. He always sends his notes to my pcp.

Jim

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