Visit With Neuro-Muscular Doctor

[lgtaylor100]

My appointment with the neuro-muscular doctor was very disappointing. The main problem was that he was insistent that I could not possibly have dysautonomia since my blood pressure stayed the same or went up slightly during the TTT that I had in January. I told him that the definition of POTS is an increase in HR of 30 or more points over twenty minutes and that I met the criteria. He was insistent that I only had high HR but not dysautonomia. He said the fatigued muscles do not arise from POTS and the fatigue would only be dysautonomia related if had low blood pressure. He said I should probably repeat the TTT for more than 20 minutes to see if my blood pressure drops. He was very arrogant and insisted that he was correct. I had already had an EMG that was normal, I passed, as usual, the basic neurological exam, and he poked some pins in my feet and said I did not have SFN. They do not do biopsies for SFN in Philadelphia. He said I could go to Hopkins which is three hours away to get the test but said it would be a waste of time because I don't have it.

My plan was to get an appointment with Dr Weimar in NY and when I called was told that they do not take my insurance. Mayo also does not take my insurance.

I did go to my cardiologist on Tuesday and he changed my beta blocker from Coreg to Inderal, basically because of my rapid heart rate and adrenaline surges in the morning. He says Coreg causes orthostatic intolerance. I don't know if that is true. My PCP is checking in with him before I take the new med. He is also considering Florinef after I have been on the Inderal (Propanol) for a month.

Does anyone take Inderal? Does it help?

I am having my doctor contact Mayo for instructions on the autoimmune dysautonomia lab panel. I do feel my dysautonomia may have this because I have sicca syndrome but no Sjogren's and have an elevated ANA. I am also seeing an endocrinologist at the end of the month. I had an elevated metanephrines on a 24 hour urine. Other than this, I am at an impasse now. Any suggestions?

[Katybug]

Hi lgail. If you are willing to come to the Baltimore area, Dr. Khurana is a POTS specialist (neurologist) at Union Memorial Hospital in Baltimore and he doesn't require you to have a falling BP to treat POTS. He will take a while to get an appointment but he is a great doctor and I am really glad I found him. He is listed on the POTS doc list on this website. If you are considering it and want more info, just let me know.

[HopeSprings]

Ugh, whatever with that guy! He doesn't seem to know about POTS OR neuropathy. My neurologic exam was normal too - I can feel pinpricks on my feet - I have plenty of sensation - but this isn't the only symptom of neuropathy and I definitely have it! I hope you'll consider Hopkins. If you're suspicious of SFN, see if there's a Dr. that can do both autonomic testing and the biopsy (someone like Weimer). So sorry he doesn't accept your insurance. I've been there- wanting to see Dr's that are not in my plan and too expensive to see out of pocket. It stinks. What did they say about the elevated metanephrines - did they rule out a Pheo?

[lgtaylor100]

Naomi - Do you know what the treatment is if they find you have small fiber neuropathy. I will look into out of network benefits so I can go to see Weimar or the doctor at Hopkins if there is a treatment for it. It seems like there are so many tests for dysautonomia but few good treatments.

What other tests ANS testing did Weimar do?

I don't know yet if I have a Pheo. I am going to the endocrinologist in two weeks. Last year I had a CT scan of my abdomen and the adrenal gland looked normal but I did not have the elevated metanephrines at that time. Also I understand pheos can appear in other parts of your body.

[HopeSprings]

What I remember from my initial evaluation (4 yrs. ago) was a very thorough Tilt Test, valsalva test and another one that I think measured sweat on hands and feet? The results are broken down into sections: Parasympathetic, Sympathetic and Sudomotor. As far as SFN, I think it depends on what you're trying to get out of this. If the issue is pain, they'd treat for that. If you're trying to uncover the reason for the dysautonomia, that's another story. If they find SFN, it seems to narrow down the investigation. The hope is that you can find out what's causing it (which is where all those blood tests come in) and then treat the real cause. But honestly, I think they often don't find the cause. This is probably where I'm headed - idiopathicville. If you can find a Dr. to just run those blood tests (without needing proof from a biopsy) that's another option. I felt like getting those results made my Dr. want to try harder, plus I just like to know what the heck is going on. It may not be worth it for you though. I'd hate to see you spend money and then end up in the same boat you're in now. Maybe the endo will have answers - that would be nice.

[lgtaylor100]

Thanks Naomi

I'm having my PCP contact Mayo for info about the dysautonomia autoimmune panel as well. . My thoughts are either autoimmune or endocrine related.

Hopefully I will find out soon. I know many of you have been suffering for years, but this year and a half has been very hard on me. It almost feels surreal.