Really sick, looking for info
 

I have been having issues for a long time, but things have got much worse over the past 6 months or so. A couple weeks ago I seem to have triggered something after a intense workout. I have been in and out of the ER since.

I have had episodes of near-syncope for years, but the last couple weeks I have been fully blacking out and falling. I get dizzy going up and down stares. I feel nauseous when I eat a meal, and I have had constant headaches. When I am trying to sleep I stop breathing and gasp for air and cough.
For some time I have had trouble urinating, but it has got really bad the last couple weeks.
For years I have had nerve pain in my arms and hands, and my feet are constantly numb. I have had pain while swallowing certain foods, that has got worse.
I was born with issues with doubled vision that I am now having trouble suppressing, making things really hard to see properly at times.

Out of the tests that the ER did, the ekg showed that I have a prolonged qt interval, a echo showed mitral valve regurgitation. A chest xray, cat scan of brain and abdomen, and urine and blood tests were all normal.

My question is, is neuropathy something I should be looking at, does any of this look remotely like any type of neuropathy, and what type of things should I be googling, info I should be looking for?

Google Autonomic Neuropathy, Dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome.)

How is your heart rate and your blood pressure? I have POTS from Autonomic Neuropathy.

I have improved greatly but I was terribly ill. I have Peripheral Neuropathy that is often part of Autonomic Neuropathy.

I just wanted to add that you should probably see a cardiologist for further evaluation. I have tacychardia, heart block, and mitralvalve prolapse, as well. If you can get your heart problems under control, you can better focus on the PN.

Thanks!

My heart rate seems to be good, just sitting around it is in the low 50s, and when laying down it dips down into the high 30s.
My blood pressure seems to be fluctuating from to high to to low when it is tested (I dont have a way to test it at home).
I get the blackouts when I stand and start walking or when I bend down. Standing up fast then sitting back down makes my heart feel like its going to explode!
I have also had episodes where it feels like my heart is fluttering, and times it feels like it is beating one really hard beat, like it is punching me

I have a appointment at the end of the month to see one (soonest they would see me)

This sounds like classic autonomic dysfunction. Your appt with the cardiologist is a good idea. He can address the syncope (your BP may be dropping as you stand or bend over) as well as the QT interval and mitral valve. A heart rate in the 30 can also be related to dysautonomia...unless you are a marathon runner or something similar (in extremely great shape)

Do you take any other medicine, where side effects might be causing your symptoms?

My cardio doc said my heart was fine, did testing. I was incredibly ill with my POTS/Dysautonomia. We had no idea why I could not sit or walk etc. Well, the doc had no idea either...Thankfully he went to ask another doctor in the same office who said it could be Dysautonomia. Then he told me that is a possiblity. BUT, he didn't know what to do. :mad:

I have an integrative doctor that DOES thankfully. Sometimes it takes a lot of work to get all of the answers. I have researched for years. We do have to help ourselves also. I have certainly figured that out since I have CFS and POTS-Dysautonomia. Before that, another rare problem that ended up with surgery on my head to cut one of my vestibular nerves. A nightmare.

I have Mitral Valve Prolapse (MVP) too. According to the (3) cardiologists I have seen, so far, they have common information that MVP is something that is benign and will not cause a heart attack (unless of course, one has other heart issues).

If this is your case, you have one problem down....

Yes, I am (well was!) a elite/pro level athlete :), although I haven't been training and competing much the past couple years :(. The issues I have been having this year have made it impossible to even remotely ride or train at that level. Anyway, the low heart rate is normal for me

No, not even over the counter stuff (I have a bit of fear of medicine)

I seen a general physician today, seemed like a nice guy. I was a bit frustrated because he didnt seem to see the 'big picture', and seemed to want to ignore a bunch of my symptoms. He did admit though that although he has some theories, he does not know what is wrong, and that this is something that is going to take time and a lot of tests to figure out. He has a bunch of tests lined up for me (once I get medical assistance to pay for it)

I am not sure I will ever get a full proper diagnoses that explains all my issues, since my medical history from birth is so complicated, and shot full of holes.

To sum up a bit, from birth I had developmental issues, dx of autism at age 6, years of different therapies (threw school system), dx of numerous learning disabilities, have speech/communications issues (use alt communication), sensory integration issues, motor tics, aura migraines.... add the fact that I lived in a abusive house, were poor with no health insurence. I didnt get the proper help that I needed, and my parents had lost most of the paperwork that talked about my childhood dxes, and could have cared less to remember any of it.
Past issues seem to be irrelevant to doctors, who only want to take into account the current symptoms, and if I dare mention that I have a autism dx, I get treated and talked to like a kid, and not taken remotely serious

One other thing about Mitral Valve Prolapse, if you have any dental work done, or really any type of surgery, you need to be on antibiotics before the procedure.