Hi,i'm New And Glad To Find You!!

[Debbie Rose]

Hi, my name is Debbie and I was so glad to find out that I am not alone.All the writings said how rare these conditions were so I had no idea how many others were afflicted by them...So here is my story

I am A registered nurse, for the past 36 years and when I don't know enough about something I investigate...

I have struggled with depression my whole life but was never on anything until I was diagnosed with Fibromyalgia in 1995. At that time I also found to have sleep apnea so I started using a C-PAP. Once on the antidepressants and sleep med my symptoms of pain and fatigue lessened for a while. But I realized that as long as I was overweight my pain would not improve.

In 2003 I had Gastric Bypass and lost 120 pounds and my pain was gone....But the fatigue was constant with boughts of brain fog and memory problems

Due to the fatigue problems I couldn't work at a hospital unit any more so I started to work in a Dialysis Clinic and did OK till I got transferred and the clinic was poorly managed and I started to be stressed ALOT!...Then I tore my biceps muscle from my rotator cuff and couldn't work-that was March 2010

A new kind of fatigue set in making my arms and lesgs heavy. Within an hour or so from waking I became so fatigued I couldn't move or hold my head up. In May I went to watch my son play ball and we were sitting in 70 degree weather but it was very sunny and as the temperature rose a bit I started to feel very ill.I was in bed for 3 days, unable to move.

After that day I started to have blurred or double vision alot and my bladder started to hesitate before functioning too along with numbness and loss of sensation in both feet and left lower leg

It was then my PCP thought I may have MS...MRI showed 2 lesions in occipital area which could indicate demyelinating process-radiologists opinion

Went to one neuro who flashed lite in my eyes and did other tests for strength and sensation and told me I didn't have MS and that the lesions were atrophy...No explanation of what to do from there..nothing

So I went for 2nd opinion...this guy didn't even have a film lite to look at the film under...again more poking and walking and checking....this one said it was left over from a severe concussion I suffered as a child...Again no further instructions.. no concern. But he did agree that I was a bit off balance with some neuro deficits

So I put things on hold till I moved down fro MD to NC and then saw a neurology Specialist in MS--ran all the known tests which were all negative-decided I had "pain-free-benign Migraines" HUH??? As time went by more symptoms kept appearing one by one

Going back a bit-and always thought it was related to fibromyalgia--Dry mouth, difficulty swallowing-feels like lump in throat sometimes...for years

In 008 started to have feelings that I couldn't get enough air in-had to take deep breaths or yawn

By fall of 2011 I started to have dry eyes and blurred or double vision when very tired

Then that fall I started to have feeling like I was going to pass out along with rapid heart rate-bought a BP machine and found it veery low when I got up. With the rapid heart rate I also had Chest pain and shortness of breath, sweats...Saw cardiologist-stress test-Echo and a month on an Event Monitor--"heart is fine"

I had to ask for medicine to decrease symptoms and placed on metoprolol-which worked to inprove 80% of symptoms

Since then my balance and loss of sensation, numbness and tingling increased,found taste and sense of smell was decreasing, my dry eyes got worse too. (can slice and chop an onion with NO tears or burning of eyes)

Another significan deficit since May of 2010-my ability to read books and retain what I read-gone

Had vivid imagination and thinking planning mind-gone-I can't hold one train of thought for more than a minute

My mind is blank!! No imagination or ability to plan in my head--really disturbing

So thats about it-oh yeah-just this past month I've become easily hypoglycemic if I eat any amount of carbs without other food-like cereal-drop to 51,as low as 47 and the symptoms don't come on till I'm in the 50's-really scarey

and of course my normal temperature has always been 96.9, my hands, feet and nose always cold...still heat sensative and exercise intolerant too...I probably missed a few things, my memory is not all that great.

But so glad I am here and have others to learn from.

I have an appointment at UNC Neurosciences on August 3rd so we shall see

Sorry this was so long

Thanks for listening, Debbie

[Katybug]

Welcome. Hope your appt at UNC gives you some answers. It sounds like you need a good team of docs around you. All the best.

[peregrine]

Hi Debbie - welcome! I also hope your appointment at UNC is helpful. As a thought, since my autonomic neurologist mentioned this to me - have you been tested for Sjögren's syndrome? It generally results in dry mouth and low tearing, and seems to be associated with ANS issues too. I expect the UNC folks will pick up on this right away, but just in case it might be worth reading up on.

[NMPotsie]

I'd like to hear more about your swallowing difficulties, if you learn anything. I've had that feeling of swallowing around something for 15 years. My doctors are only now actively pursuing a diagnosis; I'm supposed to get an upper GI, eosonophil stain, and barium swallow as soon as my most recent bout of staph in my throat/tonsils subsides (2nd one in 2 months). I have tried to find info about the swallowing thing but no one seems to have any. If they tell you anything about it, please share.

Sorry you're having so many problems. I hope you find the answers you need; not knowing what's wrong is half the terror of this illness for me.

[Debbie Rose]

Thanks Peregrine, I had looked into it and know a few people with it..Hopefully they will look into it too

Yes, NMPOTSIE, the swallowing problem has been ongoing and getting worse. And sometimes, especially after eating I feel like some of it has gone down my throat because I always cough up some liquid.

And at times it seems I choke on fluids and foods and it definitely goes down the wrong way because I start barking like a seal to cough it up. I had read that gastroparesis can be a problem with some syndromes, and I have dry mouth-maybe dry throat? as well??.

I'll definitely let you know what they say