Hi,
So sorry to hear of your situation. It took 8 years for me to get a diagnosis. I know what you are going through. I am wondering if you have ever had a head injury? Also, my dad has really low blood pressure like this that fluctuates drastically from just moving position of body. He was just diagnosed with Shy-Dragers which is a very rare condition that involves low blood pressure. Have you had your blood sugar checked? Do you have pain? What other symptoms do you have besides the blood pressure and extreme fatigue? I take it you have been to a neurologist? What about a movement disorder specialist? Again, these are just suggestions. Please don't give up. Someone will find the answer. Maybe you are in the initial stages of something and they are just not yet able to diagnose it. Others will come along and give you help. Welcome. You are not alone.
Brain

Thanks, Brain.
I'll have to look up Shy-Dragers. Yes, my heartrate and blood pressure often changes suddenly in response to a shift in position - even just rolling over, sometimes gets my hr to spike, and lying down tends to send my bp plummeting. My "normal" would generally be a textbook 120/80 (ish). But when things are going weird, they get very weird. HR and Bp shifting by 20+ points in the blink of an eye (or the shifting of my body).

Yes, blood sugar (and a million other things) checked. All fine except for the following:
CPK is always elevated. CK-mb is always elevated.
ANA elevated. Anti-DS-DNA test positive twice (Lupus specific, generally), and then negative twice. Go figure.
Maybe a few other "nonnormal" tests but those are the main ones.

Other symptoms include peripheral neuropathy, unexplained on-going chest pain that mimicks heart attack symptoms (and gets really really annoying/bothersome/painful), but isn't my heart apparently. Pitting edema in my legs. Carpal tunnel and tendonitis (this was where things started) for which I've now had release on both wrists. Still have muscle tension and tendonitis issues. Muscle weakness. Diminishing dexterity in my hands (apparnetly unrelated to surgeries). Last neurological exam included lack of reflexes in both ankles and one knee. Freaked me out because that was a first, and a sudden shift.

Also significant memory issues - fog-brain and sometimes confusion that is quite disturbing - like forgetting what season it is for a minute or two. Not being able to come up with common words. Not recognizing an article of clothing that my husband has had for years. That sort of thing. I'm not old enough for that sort of thing. I'm not even "middle aged" - so my husband reminds me.

MRI of brain normal. No indication of any clots currently.

Normal EMG of right arm and leg. Normal nerve conduction study (now - post CTS release) on median nerve in right. Don't know about left (which is worse in terms of function - 8th percentile on a dexterity test - which is not so good for a classical musician who's used to great dexterity and strength).

I seem to get injured very easily. Like I sprained my finger from opening a tupperware container. Injured my big toe from I don't know what - still healing.

Raynaud's syndrome. Polycystic ovaries. clotting disorder (unrelated). Yadda yadda yadda.

Being tested for Myotonic Dystrophy type 2 which I find out about in late April.

How's that for a start?

Too much, I"ll bet. But thanks for asking. And no, no head injury. And the list of docs I've seen might just make this essay of a reply a small tome. Yes, several neurologists. Several PT folks. Several of everything, it seems. Still no answers, or even hints.

So tired.



BIBO

BreatheInBreatheOut,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sad to hear what you have been going through. We all go through things like this in our lifetime. I have epilepsy since the age of 10, it took me about 35 years until I came across a doctor to help me. He sent me to an Epileptologist, and ever since his assistance (2009), I have not had a seizure. What I am trying to say, in every medical condition there is a solution.

There is one forum I would like you to click on:

peripheral neuropathy:
http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

--like some sort of dysautonomia from where I'm sitting, possibly secondary to autoimmunity of some sort:

http://neuromuscular.wustl.edu/autonomic.html

You've given us some idea of testing you've had, but I think more specialized testing is in order, along the lines of the link above, or along the lines of the Liza Jane spreadsheets for neurologic symptoms:

www.lizajane.org