Waiting for diagnosis, what are your thoughts?

[jenbe]

Hi all! Going to try to keep this short. Last March started with left chest pain that wrapped around and under my shoulder blade, numbness and tingling in rt foot and hand migraine aura. after about 3 weeks subsided but having frequent muscle twitching especially thigh, upper arm and eye. And shortness of breath when walking to parked car or up the stairs. Then in August chest pain started numbness, brain fog, migraine aura, mixing of words, buzzing of foot and progressed to feeling of icy hot put on patches of my body. Want to sit once I get to top of stairs. (side note: for 6 yrs have had near fainting episodes while cheering for my sons football games, at one point almost called 911) My primary sent me to the ER and Dr. there mentioned MS, then went to first neurologist who after negative MRI's put me on Cymbalta for the neuropathies and said he didn't have a diagnosis nor were there any other tests to be done. Then in early Dec my daughter was competing state gymnastics, of course I was cheering and had near fainting. The next day was cleaning(makes me feel really bad), putting up Christmas decor and cooking when I passed out in Kitchen. Time to see new neurologist. LOVE HER: She right away told me a few different possibilities and set up testing that day and another round of tests:
Holter monitor: 11hrs 46 min of tachycardia in 48hrs, incl at 3am when got up to go to the bathroom
Tilt table: went from 61bpm laying to over 100bpm upon tilt as well as chest pain, dizziness and flushing
Quant sweat: right arm didn't sweat at all
Thermoregulatory Sweat: No sweating at 10min, or 20 min, reached 38 celcius in 30 min and only small sweat on wrists

Had the tilt table and sweat tests on Tuesday and increase in numbness and tingling in right foot, leg and hand since.
My days go up and down can have several okay days in a row, but still feel like crap after climbing stairs and bending/stooping. Taking the Christmas tree down almost took me down.

Just wondering if any of this sounds familiar to you and looking for support and ideas.

Thanks,
Jennifer

[jenbe]

Thanks for your reply. My tests were just on Tuesday, and no haven't gotten the report back yet. I actually don't have an appt with the Dr until next month either. All of my tests were done at Froedert Memorial Medical complex in Milwaukee Wisconsin. The neurologist that I've been working with, works closely with a neuro that specializes/does a study with cardiac-neuro. I really like her a lot. Considering my first neurologist was a wet-fish. Seems my muscle twitching, right eye aura and right foot-lower leg numbness has picked up again since the testing on Tuesday. Dehydration from sweat test??? Hmm, also do you seem to "flair" at any particular time in your cycle.

Thanks,
Jennifer

[Heiferly]

So you haven't gotten "the report" back yet after all those diagnostic tests?  (Correct me if I'm reading that wrong.  I'm sort of reeling from my own diagnostic drama at the moment so I'm not in top shape for responding at the moment, but I'm trying.)

Just from the raw results from the tests that you're reporting above, it is my non-medical assessment that you definitely test positive for some form of dysautonomia (aka. autonomic dysfunction).  The million dollar question is what is mucking up your autonomic nervous system?  If I had a dollar for every person on this forum who was looking for that answer ... well, I likely wouldn't qualify for my "extra help" with my Medicare Rx costs anymore and I have no idea how I'd afford my meds ... so it's a good thing I don't!!  Which is all to say, that isn't always an easy question to answer.  Sometimes the answer is readily apparent, and sometimes it can take years to find.

On the bright side, it sounds as if you've been very thoroughly tested.  Cleveland Clinic?  Mayo?  (You don't have to answer that if you don't want; I'm just curious.)  As to whether it sounds familiar:  oh my, YES.  You'll find hordes of sympathizers here.  Presyncope (near-fainting), syncope, migraines, chest pains, tachycardia, anhydrosis/hypohydrosis, and brain fog are all quite common on our forum.  

As for myself, I have all of the above.  I can't really recommend my medication regimen to you, because medications are pretty much trial and error; what works for one person is different than what works for another, even if symptoms seem identical.  There are a number of non-pharmaceutical "tricks of the trade," but unfortunately I feel a migraine coming on and think I need to go find my medication and take care of this pronto.  I'll respond more when I'm able.  sorry.