New Neuro Left Me A Little Confused

[TWynnB]

My background - I had something 'wrong' with me last late fall - and going into my GP's office, my HR was 118. I honestly didn't think much of it. I found out I had cervical myelopathy from cord compression, with urgent surgery on 12/8/14. My HR under anesthesia never went below 120. The HR issue didn't resolve post operative, and then a friend in a professional support group pointed out I had a lot of symptoms similar to her, which included the HR, tremors, and hyper response to adrenaline. I had always stayed so cool under pressure!

Upon her recommendation, I did a poor man's TTT on myself. My resting HR was 98. At 2 minutes it was 116, 5 min 124, and 10 min 139, where I was breathless by this time. I also have GI issues (I'm the only cervical surgery that lost weight, LOL).

I was officially diagnosed with orthostatic hypotension by a cardiologist on 7/15/15. My BP is never as high as it was there....somewhere around 130/80 laying down, and it dropped to around 100/70 on standing, and I was dizzy.

In May, I had made an appointment with a neurologist 3 hours away that was listed on the dysautonomia international website (but not this site) because she was a neuro, and I wanted her to address my myelopathy and the probable POTS. Unfortunately, by the time I saw her 9/1/15, my spasticity had gotten much worse and was a bigger priority than the POTS. My HR is controlled fairly well by the propranolol that I am on. I must admit, since I am on personal disability insurance, it helps to have the diagnosis to help justify staying out of work (although the spasticity right now is more than enough!).

She was great with my spasticity/neuro signs, and ordered an MRI (which was done yesterday and normal, I honestly expected that). She did tell me I had autonomic dysfunction from my cord compression (I knew that), and that I *couldn't* have POTS, that they were pretty much exclusive of each other. She did say that people with POTS had idiopathic causes - meaning, they don't know why.

I'm thinking she's just outdated and uninformed concerning POTS, but am I wrong? I am debating finding someone else that can test me and be done with it - I can ask my cardio (I have a recheck next week with him), although I know he doesn't test for it. I do have an appointment with someone in March, but I am supposed to be back to work by January - although that idea is looking dismal right now.

Also, does anyone else get spasticity with dysautonomia? I am on baclofen and now diazepam as well to try and control the spasticity. I assume that all of that issue is from my cervical cord, but my friend did say she is hyper reflexive, and I think a few other people on here have said the same thing.

Thank you!

[Sylvie33]

Dear TWynnB,

I so sympathize with much of your post - it is so difficult to get to these appointments when you are ill and then be disappointed with the doc. As someone wrote on some website I read (my new role -- dysautonomia researcher -- which you have to be with this illness) "all squares are rectangles but not all rectangles are squares," i.e. POTS is the square and dsyautonomia is the rectangle. By definition, POTS is dysautonomia.

My case is the reverse: I have dysautonomia, but I do not meet the criteria for POTS. I had my first app't with a new neurologist last week. Because I "failed" the HR and BP testing, he stated I cannot have dysautonomia! Yet I also made an app't for a real expert on dysautonomia on November 9th.

The new neurologist proudly told me he was an EMG expert(electromyography -- measures large nerve fiber effects on muscles) and ordered one for me, which I know from my agglomeration of symptoms, will not show anything: (like your hunches about the MRI). He found sensory loss in my feet, (to an extent that freaked me out) but I know my muscles are fine. I now know from his finding, and my own research done after meeting with him, I need specific tests for detection of small fiber neuropathy. I think, from what I read, (with all medical caveats needed here) you may need that EMG!

So what are we to do? It is so hard as a patient to appear to know more than the doc even if you do.

Here is the core of my advice: a) read, read, read, even if you scare yourself -- you need to ask the right questions and question wrong diagnoses in an intelligent way. Download and use citations if you must!). In the future, try and talk to someone with medical expertise in the office before you make a trip. For example, I talked with a researcher in the office of the the dys. expert and sent them a letter with the chronology of my symptoms. Whether it will help I don't know. c) try to use an advocate if you can.

The best part of my ordeal now is that through phoning, I ended up with a great psychiatrist/neurologist who appointed himself as my "quarterback." I will let him deal with the new doc as my advocate to make sure I get the appropriate tests. (My good doc reads all the stuff I download and has respect for what I say -- a miracle in the medical world). Unfortunately, he is an exception; fortunately, he is my advocate.

Do you have a physician who can also call to question the findings you find questionable?

I am also on disability and I need to have a clear diagnosis in writing. In addition, we both need to at least try to determine the root cause of our symptoms, if there is one. (As more people will tell you here, many people have "secondary" POTS.) Finally, we at least should have a general idea about prognosis and treatment.

I wish you well and I hope you can make some headway with getting a proper diagnosis and treatment.

--Sylvie