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Old 05-06-2009, 04:52 PM #1
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maryec maryec is offline
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Join Date: Apr 2009
Location: Florida
Posts: 291
15 yr Member
maryec maryec is offline
Member
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Join Date: Apr 2009
Location: Florida
Posts: 291
15 yr Member
Default Time to introduce my story

Symptoms started in my early 20's hand stiffness & finger contrctures, eeg showed possible epilepsy, but it wasn't. Raynauds developed, severly in my hands & feet. I started haveing a lot of muscle sprains. I went a long like this , till about my 30's, I developed major tendon problems, went through the year of therapy splinting, it all led to sugery, they got in there & found I had no tendon left, had to scrape the scare tissue out & attached the muscle to the bone. I never recovered from that sugery with my muscle strength. They wouldn't do the other areas affected because of the poor outcome. 2 years after that I started having trouble with double vision, twitching in my eyelids that wouldn't stop. I called an eye doctor, & got an app. for 2 weeks out, I started loosing weight, extreme fatige. Before I got to my eye app. I woke up one night at 1:00 AM body on fire, tongue burning, throat muscles wouldn't work, my mouth was so weak I couldn't talk, slurred speach, feet & hands swollwen orangy red in color. I call this the night I was hit. Emergancy visits lead to a Reumy app. They called it Mixed connective tissue disease, with suspition of an neuro disease of an unknown nature. Weakness, spactisity. Pred. 60 mg daily immurane, methatrexate, neurontin, flexerell. were the drugs I was on then. I moved to FL with hubby in 2001, all hell broke loose, I guess the move was to much, I had my first crisis, got up one morning, my arems felt weak & wouldn't work, then the draining feeling from my face worked it's way down my body, I was a floppy rag doll, my mother in law drove me into the Hospital, spinal, & tests done, MRI showed tempral lobe lesions, they thought MS, Lupus, or cancer. Went on to see Reumy he put me on, cellcept, 40 mg pred, IV methelpred. every 2 weeks, Dilantin, neurontin, Flexerell, getting B12 injections, methotrexate. Meds were not working right, I would go real high with energy after IV pred. & crash a week before my next dose, this went on for 6 weeks, before my next crisis in the doctors office. I was sent to a different hospital admitted, this time I was to weak to breath, Couldn't talk, but I could hear them, I just couldn't respond. I started going into seizures, do to being over medicated with wrong meds. Hospital Neuro, had a fit on the meds, Reumy was called & had his *** handed to him, for playing with a neuro issue.
Was taken off all meds, by Neuro, got a new Reumy, I got worse & worse, never regained strength or energy, Floaters covered my eyes vision, double vision. Going through an eye exam I had my third crises , right side of my face& half my tongue was paralized & drooped, the doctor thought I was having a stroke, in came the ambulance again, in the mean time that draining feeling came again, my whole body went. New hospital again, Neuro on duty, came in & said to my husband, I know what this is, he ran the tests Tensilon, cat of my heart, emg ncv, Genetic testing, spinal tap. You have Myasthenia Gravis, with another overlap disease. Started IVIG , 5 days worth, mestinon 120 mg every 3 hours, 180 mg timespan ,40 mg pred daily.
I then had to have a thymectomy.
I have not gone into crises since, I still battle flares, double vision, weakness & stiffness of muscles, foot drop, myotonia in hands, low fevers, eye shaking,& weakness, still have brain lesions, Emg Ncv show Neuropathy, Myopathy, & Jitter from the Myasthenia gravis juction damage.

I am now focusing on getting my overlap diagnosed, due to Nerve & muscle damage, & atrophy now. Neuro has told me my overlap is connective tissue, so back to the Reumy, they will probably say, it is a neuro problem, & we will go round & round again. Someday when the damage is extensive, I will be diagnosed, like my MG was. I am still on 120 mg mestinon every 3 hours, 180 mg Timespan at bedtime, Pred. , IVIG, Now because of neuropathy & Myopathy, IV Methelpred, set up for 3 days, by home care nurse.
Well this is a summed up story of me !
Mary
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