So many problems, so few diagnoses...

[Sarabi76]

I have Aspergers Syndrome and Sleep Apnea; those are the diagnosed issues.  Beyond that, I have spent my life with the same frontal headache, constant 24/7 chronic fatigue, an annoying jumping spasm issue that only happens when I'm cold or relaxed (and can cause my body to tense and/or cause me to shout out or yelp), hand weakness, leg weakness, sore neck & shoulders, sore lower back, sleep starts, anxiety/depression, and poor circulation in my hands and feet.  To add to all of that, I have moments where I get this weird weakness feeling throughout my body and I literally cannot move for a few minutes because I am too weak.  There is usually something that my hands don't want to do throughout the day, because of weakness.  When I try to open a pudding cup for my son, I sometimes have to focus all of my energy into my hand to get the stupid thing open, because my hand is too weak to do it.  At times when I am walking, I look like I'm limping because one of my legs just decided it wasn't in the mood to function properly.
Over the years my problems have been getting worse and more frequent.  Unfortunately, the doctors don't seem to think there is an issue here.  One of these days I may not be able to function at all.
I had a MRI in 2004, which came back fine and with no Chiari Malformation.  My EEGs, EKGs, MCT, etc over the years have all come back clean.
How can I get a doctor to listen to me?  

[ggreg]

All I can add is humans are highly adaptable creatures, and you CAN get used to that mask, you know perfectly well how to yank it off if it scares you at any point, and hon, if you'll give it a good, long try, maybe you'll get used to it and maybe you'll sleep better, and a lot of your tiredness just might go away!  I mean, even if you don't have sleep apnea, it's worth a try.

This link gives some newer suggestions on treatment of your interstitial cystitis:
http://www.mayoclinic.com/health/interstitial-cystitis/DS00497/DSECTION=treatments-and-drugs

And I do think you should try a new doctor, one who gets your background correct right from the start.  And you could consider spending some time on occasion talking with a psychologist, unloading all this anxiety and talking to someone about this endless frustration over your health issues, might help you a little, plus they just might give you tranquilizers... altho you'll HAVE to use your CPAP machine for sure if they give you those.  Oh, and your 40 pounds isn't bad, I only mentioned it because weight can close up a throat that is already prone to do that.  I feel for you, I know how desperate you must be, hope you get better soon.

[Sarabi76]

My blood sugar is always fine, I have a CPAP, but I don't use it, and I'm less than 40 pounds over weight and working on that issue. :)  I do not use my CPAP, because Sleep Apnea is NOT (in my mind) the primary cause of why I can't sleep and therefore, doesn't give much, if any relief, to my sleep problems.  I could not stand waking up in the middle of the night feeling like I was being attacked by the CPAP, so I do not use it.
I do not believe that my 33 year old headache is a migraine, but, nonetheless, migraine drugs have only helped it get back to "normal" when I did have a migraine.  My doctor seems to think that I need to be on an SSRI to help with my issues, but those mess me up more than anything.  His solution to that...try another SSRI, because they're all different (maybe, but same reaction here!).  I think that he's still on the belief that I'm Bi-Polar, because I was misdiagnosed as that when I was a teenager (they should have diagnosed me with Asperger's, as that's what I have).
I've been on muscle relaxers, which make my jumping problems worse, not better, I was on Depokote (not sure of the spelling), which did nothing for my headache, and other than SSRIs, I have not been on any real drugs for my headache (none that I can remember....I was put on lots of stuff for my "Bi-Polar" when I was a teenager....those were long evil years).
As far as the CFS goes, no one seems to care that I'm exhausted and can't move, so I have never been on anything for that.  Unfortunately, as I have several issues preventing me from sleeping, I'm not sure how much good it would do.  I also have Interstitial Cystitis, so I have to pee every 20 min or so, which also does not help with the sleep issue (although, I usually only get up maybe once for that at night).
Personally, due to my Asperger's, I think some of my issues have to do with anxiety from being around people all day.  I mean, I'm fine with it, but I have to expend a lot of energy to deal with it, so I think it stresses my body.  I wanted to try to go on some form of anti-anxiety drug, but, alas, my doctor recommeded yet another SSRI.
What really bothers me though is that no matter what doctor, or what kind of doctor, I go to, they don't care about my opinion.  They all come up with some idea of what to try, and I say, "uh, I've tried that, I think I should do this...," they ignore me and tell me to go with their idea.  Why spend the money to do something I've already tried and had a bad experience with? I think I'm just tired of doctors now....they don't care, and I just keep slipping farther and farther away.  *sigh*

[ggreg]

Well, if you have chronic fatigue syndrome, they should be giving you medicines for that.  For your sleep apnea, they should have you on a positive pressure airway machine at bedtime.  Sometimes if you do not sleep well, a whole cascade of problems issue from that.  The circulation issue issue needs to be addressed, because could be a heart test needs to be done, and of course your blood sugars need to be checked since diabetes wrecks circulation in the legs.  If I've suggested things you've already had done, I put them because I do not know otherwise.  Now, pain, that can really wreck a person, to where they cannot just jump up and go do things.  I'm thinking of your headache.  So, looks to me like they'd perhaps give you migraine medicines.  Lastly, and I apologize in advance, but if you've got any extra weight of significance (20 pounds is not significant), then SOMEhow you need to get that down, but not now, not with your health problems, just keep it on the back burner.  Let us know if you've got a breathing machine, if anyone is treating you for CFS, if you've been to a heart doc (you should go), labwork for sugars, and medicine for headaches.  If your doc isn't creative enough to consider those things, find another doc.