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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Jim, Volunteer Mentor | @jimhd | Feb 11, 2020

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

dckuke | @dckuke | Feb 12, 2020

In reply to @rwinney "It's a mixed bag between my PCP, Neurologist and rarely Pain Management." + (show)

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

Rachel, Volunteer Mentor | @rwinney | Feb 12, 2020

In reply to @dckuke "What does your neurologist do for you? I went to two local ones, who did little..." + (show)

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

Jim, Volunteer Mentor | @jimhd | Feb 12, 2020

In reply to @dckuke "What does your neurologist do for you? I went to two local ones, who did little..." + (show)

@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