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Re: KTMorra
May 17, 2007
Hi Jane, warning: this is long :D

I sent up some prayers for you today and I hope all of your tests will help the doc with a dx and that they go well today.

My sx's started about 16-18 years ago (I'm almost 41), but if you want to get right down to it, I started with muscle/tendon problems in my left ankle at the age of 7, eventually sprained the heck out of it in '93 and had ligament repair in 2005.

My muscle and fatigue pain and problems really started after the birth of my daughter (1989). By 1991 I started to have more intense symptoms with muscle pain/twitching, stabbing pains, headaches, ear pain, fatigue and illnesses (infections) and blurry vision changes. I did research and thought I had Chronic Fatigue Syndrome and then in 1995, I was so sick and hurt all the time I decided to see my GP and I told him that at 28 yrs old, I feel awful and that something must be wrong. I had a borderline positive ANA for Lupus and that's when things started to move forward to more definitive dx. He sent me to a rheumie who's bedside manner left alot to be desired and I never received any dx for anything other than Fibromyalgia. He kept giving me NSAIDs that didn't work and I stopped going to him and then developed the weirdest sx of the feeling that my heart was stopping every minute or so all day long. I would get a sinking feeling in my stomach and short of breath. This lasted for quite sometime. Went to my GP and he said it was just my heart adding an extra beat right behind another and that was in 1996. In 1997 I started to feel better and the heart thing eased off. All this time though I was having the buzzing, zapping, stinging sensations and I would feel light headed and hear a rushing sound in my head when I would get up from a sitting position (they did test for this too and nothing definitive - I still experience it today). My heart would continue to do it's skipping thing. Flashes of light in my head to loud sounds usually while i was sleeping & it would wake me up. Whole body jerks when falling asleep.

By 1999, my symptoms were back again with muscle pain, cramps, spasms and fatigue, a gripping pain that was weakening around the joints, numbness on and off in my extremities and I have permanent numb spots over my spine, upper arm, and bottom of heels. Had a numb & painful left pointer finger for YEARS and then all of a sudden it went away. I went to a new rheumie who said UCTD, Fibromyalgia, Sjogren's, Raynaud's, and Restless Leg. She started me on Flexeril and Plaquenil. After a few years on the Plaquenil (which I felt better) I had an episode of intense itching from my knees down that was not relieved by scratching - I literally thought I was going to go insane :dizzy: It went away after a day and then years down the road I started having the itching on my arms and legs, but not as intense as the first episode. Rheumie thought it could be a reaction to the Plaquenil and we stopped/started/stopped/started/stopped to be sure. I eventually stopped taking it. In 2000 I had a hysterectomy due to fibroids and endometriosis and that's when my bladder problems started - it became hesitant and frequent and took forever to empty. In 2003 I had my first attack of vertigo and my balance has been off since (not bad) and then my heart began racing about 140bpm at rest. They found no reason for it and I've only had a few times since where I actually went into room spinning again:dizzy: . Went to heart doctor and said my heart was healthy. GP did bloodwork and said it was a hyperthyroid. Thyroid burned out and then went hypothyroid and I've been on Synthroid since. I finally convinced my rheumie that something more was going on and she referred me to Dr. Goldberg who did an EMG and the test was negative, but he told me if i wanted to further investigate, feel free to come back - I did last year and he began all the tests and I've gotten progressively worse. I have more frequent episodes of migraines and the fatigue (oh my!). Plus the cognitive problems with memory and tripping over my tongue.

Dx'd with TMJ and that was reason for ear pain and vertigo (so they said). Then in 2005 dx'd with IC (Interstitial Cystitis) because of severe bladder pain, waking up during the night to go, frequent trips to the potty, etc. Also that year, I had enough of my hurting ankle and had surgery and that's when I noticed the muscle twitchings everywhere and severe muscle spasms in my neck and left shoulder.

Sorry this was rambling & long and i'm not sure all in sequential order, but I hope it helps you. One thing is for sure, no 2 cases are exactly alike. My sx's wax and wane and some things have not returned to normal. i'm sure I've missed some things too.

i'm sorry you've had to endure people who just don't have a clue. people can be rude and sometimes i don't think they even realize they are doing it. you know how people are drawn to extraordinary things and you are extraordinary - the fact that you are out and about doing what you gotta do, given your circumstances, makes you extraordinarily strong. You can just tell them when they stare that you pray they never have to experience this - with a smile :D

let us know how your appt went.

have a blessed day!
michelle :wave:

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