[BreatheInBreatheOut]

I'm just feeling really low. Partly I need to vent. Partly I'm hoping that something I say might resonate with someone else in some sort of useful way.
I'm just so tired in every way. Tired, discouraged, and no closer to finding out what is wrong.

I'm sure it's a very common story to have multiple docs tell you it's all in your head, more or less, or if it's not, that they simply don't know what to do and to move on to the next doc who will tell you the same thing.

I'm just so tired and overwhelmed I don't know what to do anymore. I've found docs I like, only for them to tell me, when I was starting to have hope that someone - SOMEONE - was finally TRYING to figure out what is going on - that they're done. They tell me to move on.

It'd be easy to dismiss me, I suppose - easy to chalk up me and my symptoms to some sort of panic, hysteria, hypochondria, or conversion disorder (read: "It's all in your head" (more or less) ). Problem is that it's not, and not everything fits even that set of labels.

My CPK has been high for months and months. My CPK-mb has been high. But my heart checks out fine. I have no PE's (though I have a history of such). My vitals go all weird sometimes for no apparent reason. Heartrate goes too high or too low for the circumstances. Climbing stairs with a heartrate of 60 or under is a little difficult. So is going to sleep when my heart is racing at over 100 bpm. I have progressive weakness and dexterity issues - difficult for a former-classical musician. What the heck is going on here???

Yes, I have a psychiatrist. Yes, I have a therapist. Ironically, they are some of the staunchest supporters of the idea that I do NOT have some sort of hysterical "illness" or conversion disorder (though to be honest, I don't discount the later entirely - but it doesn't make sense for everything).

This post comes after a day that began with my blood pressure crashing (during meditation, btw), to the point where I was not able to stay awake - the lowest it got, to my knowledge (when I was lucid enough to take it) was 88/46. I had a full day planned, but spent it in bed unable to fully wake up most of the time, or make clear decisions. Like, for example, I kept answer ing the phone even though I was in no condition to talk. Luckily, one of those calls was a friend whom I vaguely remember telling me that I sounded terrible and to call my doc.

FAt lot of good that did or does. Second primary care physician in the last year. He's supposed to be good with folks like me. But I went to see him today and he told me basically to give up on the idea that anyone will ever make sense of this, and to accept that I have a life-changing illness that will never change, and to get used to it. Change my expectations. Get over it. Implied that I was wrong to continue to have unrealistic hopes that anyone will ever find any answers to help me.

Maybe I could get to that point if things were static, but they aren't. They are worsening. Sometimes rapidly. And I'm not functional. Spending nearly the whole day unable to wake up is not exactly a confidence booster. I HAVE to continue to pursue some semblance of hope - don't I???

I'm losing dexterity in my hands (though I can still type most of the time). I've lost my livelihood. I'm demoralized, discouraged, and utterly exhausted trying to convince anyone to give me the time of day any more. It's a game of doctor hot potato (with me being the hot potato). My primary care physician is supposed to chair this little game, but abdicated today.

The ONLY person who has not given up on me is my psychiatrist, who is utterly convinced that there is something physically (not mentally) wrong with me, and is actually motivated to continue looking for answers.

But he is a psychiatrist. Just as I am suspicious of, say, a rhuematologist acting as a pyschiatrist, I am not quite trusting of a psychiatrist who is trying to become a neurologist or whatever else. But he's all I've got.

What do I do??????


If anyone's made it to the bottom of this message, thanks for 'listening'. I'm just utterly discouraged and exhausted. I don't know where else to turn.

Any comments welcome.

Thanks.

[MelodyL]

Hi there. I am so sorry you are going through all of this. Of course there is something physically wrong with you. Your doctors are baffled, they are not experienced enough to actually find out what the hell is wrong with you. Would you please share where you live. Just the State. Perhaps you live near a diagnostic setting (like the Mayo Clinic), where they can run every test known to man) and perhaps actually find out what is going on.

Don't worry, one of our more knowledgeable members will come along and tell you exactly what you need to do. You will meet Mrs. D, one of our smartest people, and she'll get more info from you and she'll then give you her input.

We are a very friendly bunch of people here.

Just relax (if you can) and wait. More input will follow.

I just wanted to say hi and Welcome to Neurotalk

Try and have a peaceful day

Melody

[BreatheInBreatheOut]

Originally Posted by MelodyL

Hi there. I am so sorry you are going through all of this. Of course there is something physically wrong with you. Your doctors are baffled, they are not experienced enough to actually find out what the hell is wrong with you. Would you please share where you live. Just the State. Perhaps you live near a diagnostic setting (like the Mayo Clinic), where they can run every test known to man) and perhaps actually find out what is going on.

Don't worry, one of our more knowledgeable members will come along and tell you exactly what you need to do. You will meet Mrs. D, one of our smartest people, and she'll get more info from you and she'll then give you her input.

We are a very friendly bunch of people here.

Just relax (if you can) and wait. More input will follow.

I just wanted to say hi and Welcome to Neurotalk

Try and have a peaceful day

Melody

Thanks Melody.

I live in Colorado, and yes, my most recent "hope" lay in seeing folks at the Anschutz medical center in Denver - the local Mayo I was told. One test is outstanding that had been ordered from a doc there.

We'll see, but I'm not holding my breath. Been told that if that's negative that the ordering doc does not know how to explain my symptoms, and the original doc that I first saw there has already decided that he can't help me.

Sigh. I guess after 3+ years - I guess closer to 4 - I've gotten pretty pessimistic and cynical.

Perhaps I should be posting all this not in the intro section? I'd love it if someone read my story and had some useful advice or suggestions.

Thanks for the welcome, Melody. I appreciate it.

[Brain patch]

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

[BreatheInBreatheOut]

Originally Posted by Brain patch

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

[Darlene]

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.

[glenntaj]

--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