First, thank you to anyone who reads this. Though extensive experience with internet, have never ever joined a chat room or forum. I'm desperate for help from people who have experienced something like I have and am hoping for advice on how to get treatment & what treatment & diagnosis of ? confirmed by ? tests? my local doctors are not helpful.

HISTORY:
i look like a very healthy, fit, slim, 43 year old. i am well educated, divorced from a doctor for 14 years, never remarried, have a 16 year old son. i have good friends, some for more than 20 years. though i did lose some during the past 4 years because of my strange health issues & non-diagnosis, which can be a "drag" to deal with as a friend, especially when it seems like friend may just be "crazy/have anxiety."

I've had 2 major "episodes." the first one, three years ago, landed me in E.R. three times at two different hospitals, complaining of shortness of breath, unable to lay down and breathe, weakness, headache, muscle & skeletal pain, vertigo, "twisting spine" (rib cage turned one way, pelvis the other, neck the other!), red ears, drooling, trouble swallowing, chewing, eye pain, anxiety (because i was exhausted & couldn't sleep or eat!). was accused of being drug addict at first hospital (i'm not. no drugs in system but they didn't have results back yet, sent drug counselor in who shut the door and asked me what i was "really on"!!!!). i'd been taking 1 alprazolam a night for several years to sleep & when began having such pain and fatigue, did not want to mix medicines, so went to GP (also was having torticollis!) and gave me fluxeril & cspine xray, and said if xray comes back normal to go to psychiatrist. well, i took the fluxeril and that whole night had convulsions, couldn't breathe when laying down, spine twisting, etc. and so in morning had to go to E.R. My ecg said pulse 119 (it was usually in 70's) "Sinus Tach, possible infarct, left enlarged vent, abnormal ecg" and they took a shot of my chest with a portable xray and declared me anxiety & hyperventilation. They sent me away with psychiatrist recommend.

2nd ER visit basically the same, but no treatment AT ALL. couldn't breathe, had to hold my finger in back of jaw in mouth to keep airway open and lay in a bizarre twisted way on couch, but EMT's put oxygen saturation on finger and it said 98%. I said I'd taken an alprazolam and they said they knew I'd "been taking something" because my eyes were weirdly dilated (non-matching dilation). No exrays, nothing. Got to ER, heard my story, told me to follow up with jaw dr. and psychiatrist.

Third time went to Myofascial Pain Clinic here in town (they'd seen me & told me to learn how to "breathe" because was "obvious" my "parasympathetic nervous system was kicking in" and had told me to ask GP for valium instead of the alprazolam, and come back in two weeks. But when I'd gone to GP, she refused to give me valium to replace the single alprazolam a day, acted like I was "drug seeking" and told me to go to a particular in-patient detox clinic!!!! I was so exhausted and tired and hungry and scared i knew I could not stay alone another night (couldn't lay down and breathe!) so actually WENT TO THE DRUG CLINIC! Well, OF COURSE they wouldn't take me, I'm not nor every have been, a drug addict. So I'd stayed in my car by the myofascial pain clinic till they opened and the next day and went in without an appt and explained what had happened. They put me in a room and eventually walked me down to Head Trauma in the E.R. where I stayed for NINE hours, was interviewed by every resident known to man, NEVER GIVEN AN XRAY, CSCAN, MRI, MRA, NOTHING, only valium "taper" (as if I was an addict), and eventually sent home with instructions again to see psychiatrist and jaw dr, because of my "complaints."

Yes, all this is a true story. So my best friend came from different state & saw I was having spasms all over face, head, etc. took me to nyc and there was given MRI, cscan, orthodontic appliance to keep jaw & airway open while sleeping, daytime bite plate, dx: secondary hypothyroid, given jobs stockings for swollen legs and feet, propanalol for anxiety/tension when going to sleep, an inhaler for inflammation of alveoli, a diet for leaky gut, IBS, magnesium for spasms, Wobenzym for inlfammation, trigger point injections to head, neck, scalp, botox in masseters.

MRI CSPINE: no compression, yes to loss of lordosis, partial disc diseccation changes at mid & upper cervical level. disc spaces and vertebral body heights otherwise well maintained & display acceptable sign.

BRAIN MRI: vascular asymmetry with small right internal carotid artery and right vertebral artery seen. no scalloping distinctly seen to suggest avasculitis. MRA may be performed for better evaluation.

endoscopy/colonoscopy: functional dysmotility, GERD, slow emptying, constipation, incomplete evacuation, esophogeal stricture, received esophogeal dilation while totally knocked out w/anasthesia. noted tertiary esophogeal contractions while out.

I've spent two years recovering from all that, and one year basically "normal" again, except taking hypothyroid meds, vitamin D3, 1000 mg daily of magnesium because when tried to stop got contractions again, and finally given 150 xl wellbutrin for brain fog and fatigue. it worked well, but just took edge off fatigue & body pains. then prescribed adderall for ADD and it took my fatigue away and gave me back my "normal" life of 15 years ago.

Now had a second episode two months (almost three) during which I experienced my first serious car acciden (didn't see car coming, at all?) but without convulsions, and only 1 night of non-sleep. Refused to go to ER, so waited till morning and went to shrink, then to pysical therapist. cervical neck strain, and 1 cspine xray showing more of the same. Neurology appt in 2 weeks. This time also had crazy itching, night sweats, red ears, and PT diagnosed POTS unofficially by doing laying, sitting, standing pulse and then exercise pulse. (cannot exercise, cheeks turn blue).

I'm so tired of getting run around. New pyschiatrist said all was "anxiety" until he got to know me better & I told him that if he proved it by ruling physical reasons out, I'd accept that dx. Asked him to explain the tertiary contractions while totally out under anesthesia. he was sure pulse and anxiety were combo of wellbutrin 150 xl 1 x daily, and and adderall, 30 mg 2 x daily, plus thyroid meds. tapered wellbutrin and back to 1/2 that and pulse even higher. ecg says pulse 110, sinus tach, low voltage in frontal leads.

Here's my "Red Ear" (and i'm wearing the jacket because I'm cold. in my own house. I had been watching TV when this one came on. And my nose swelled and got red, too. No, no alcohol. Just watching TV!) oh, I'm new so it won't let me post link to pic.

I'm almost "better" again. Spasms gone. Sleeping fine. Fatigue worse than ever, brain fog better, anxiety gone, swelling of legs & feet still present, eyes only sometimes strange feeling. but now nausea and flu feeling, moderate loss of appetite, forearm soreness, weird tinglings & pain, flushing neck, weakness (have a hard time opening medicine bottles, lower legs have fatty atrophy). swallowing problems & swallowing problems come and go.

SmallTownGirl43,

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.

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

Welcome to NT!

You've come to a wonderful place of support and understanding!
So many caring people here, easy to talk to, and the atmosphere is very down-to-earth.

So, make yourself right at home. Look thru all the different forums and post anywhere you feel inclined. There's a caring soul around every corner

Just holler if you have any questions or need help in finding your way around!

It's great to have you!

Rae

Welcome to Neuro Talk. Glad you found this site. There are lots of compassionate people here. You have some unusual symptoms, over a long period of time. If it were me, and I got that kind of response from doctors, I think I would get all my records and go to Mayo Clinic. Just my own view point. They are good at diagostics. Not everybody is happy with that clinic, but I was, when I went in the 80's. I am not sure I would be satisfied with what had been told considering the symptoms you have had. I hope that someone can DX you. I just can't believe all that is phyciatric in nature. Ususaly a person doens't have spasms while under anesthetic either. Keep posting your question. I hope more people will read it, and have some idea of what is going on. I do wish you all the best. ginnie

Thank you so very much to everyone so far who said hello, welcomed me, and for the advice (above). Ginnie, thank you, yes, mayo clinic is a good idea. i have avoided thus far becuase of 1) urgency and 2) money. If the urgency is great enough, the second--while still an issue--will get figured out (debt).

Last night I went to E.R. for first time since 3 years ago b/c had been coughing and my cheeks turned blue. this is first time has happened w/o gym, 3rd time in general. i called doc on call at my doctors office, he said go in to ER.

Once at ER, they got me back to a room, my BP was pretty normal (don't remember #), my pulse a bit high 115 - 119 range, and put me in a gown. gave me cough suppressant that looked like a little brown pearl (standard), and then told me sounded like "exercise enduced asthma." so coughing = exercise asthma. then gave me 8 minute lidocaine vapor.

i had some reservations about that, as i've never had it and intern described it to me as "numbing" and i expressed that my swallowing *already* feels a little numb and airway constricted so it that good idea? he said it's fine. i tried it. they closed door and left me alone in isolated 0-pressure room for 8 minutes with this stuff. about 2 mins in, i started feeling saliva all pooled up and starting to need to "swallow." i tried and it was SLOW and strange and PAINFUL, like swallowing a bubble of air? and only on left side? and felt like might not open back up? terrible.

so reminded myself it would be okay, kept inhaling and when would pool too much, spit into kleenex. eventually had to make myself swallow again and same thing.

when he came back, i told him it something wasn't right. he dismissed me. then resident dr. came in and told me "we don't have that problem with that medicine" ????? i went ballistic in my mind. WE aren't the ones being treated! I am being treated and I WAS/AM having that problem! he left the room, a nurse brought a benadryl, i managed to get it down (painfully, same thing, and with some left over water in my lungs), and she left the room. I was so weak i felt like a truck hit me. had to go to the bathroom for 8th time since there and could barely make it.

Eventually felt better. chest had opened up a bit from med but it had made all other symptoms worse, and bad throat. when leaving, i spoke to attending. a light bulb went off when i told her that my airway had been dilated 3 years ago and maybe it needed it again because airway felt small and she dx with "esophogeal spasm." i didn't argue, but i'm telling you all, that's not what it was. it was esophogeal functional dysmotility (which i've already been dx with, too) and i was nearly unable to get my numbed throat to swallow. llarynx, pharnyx, whatever. i went home. am laying on couch, propped up with pillow. swallowing back to "normal." aspirating a little saliva into lungs when coughed last night but feel stronger today.

don't ever go to a "teaching" hospital. endo appt been waiting for 3 mos. neuro appt been waiting longer. attending told me to make endo appt. gee, thanks.