Im going to a neurologist tomorrow. What should I ask her?

[ChookityPop]

I wonder if there is something I have forgot that I should bring to her attention.

I want to check for SFN, burning pain in nerves/tendons in my arms, strainy/painful eyes when(so I cant read that much), muscle cramps all over my body (not all the time).

I would really appreciate if there is something interesting I could ask her or get her to test that is common in us CFS patients. I have dysautonomia/blood pooling but thats not relevant here I guess.

: )

 

[SnappingTurtle]

If she is open, listens well, takes good notes of your issues and examples of your limitations in daily life (ask for progress, treatment, clinician's notes via a medical revords request), then explains well next steps and treatment plan (tests she ordered and why, what if test A was unremarkable, what is next and why), then that is a good sign. If she has heard of or is willing to get updated with ME or fibro diagnosis, even better.

In my experience (burning all over and blurry, double vision), the neuro helped to rule out other possible diagnoses, including myasthenia gravis (result was negative for me). She was going to perform nerve conduction test but was doubtful i had a "neurological" problem and suggested I proceed with rheumatologist. She didn't seem like the open minded type, so I pursued no further.

 

[JAH]

Dysautonomia could be relevant, Do you have POTs? A neurologist could treat that, I would ask about testing for POTs, GAD antibody. You have some kind of neuropathy if your have burning. You could get a EMG.

sorry if I’m a little all over the place, I have had tons of neurological testing-blood, EMG, MRIs, tilt table,J platform balance test. Cramping could be a lot of things, but electrolytes would be the first thing to check.

good luck, hope you have a neurologist that knows something about CFS. That’s most important

J

 

[BrightCandle]

Look into brain stem compression issues via CCI and spinal fluid leaks if you have that neck instability feeling and pain.

 

[pattismith]

I wonder if there is something I have forgot that I should bring to her attention.

I want to check for SFN, burning pain in nerves/tendons in my arms, strainy/painful eyes when(so I cant read that much), muscle cramps all over my body (not all the time).

I would really appreciate if there is something interesting I could ask her or get her to test that is common in us CFS patients. I have dysautonomia/blood pooling but thats not relevant here I guess.

: )

If you want to be tested for SFN, you need to bring symptoms the neurologist can easily identify as typical for SFN, mostly tingling in hands and feet or sweating disturbances for example.

If you have dry eyes or dry mouth, and SFN symptoms, then you need to get tested for Sjogren via lip biopsy.

 

[ChookityPop]

She was passive aggressive in the beginning and I let her know. Im so tired of taking shit and get zero help. Then she became super helpful and she is now testing me for a lot of things , myasthenia gravis etc. She said I was a very interesting patient. I think we bacame bestfriends.

Thank you very much for all the tips!

: )