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 :wink:

Wow Mary,
thanks for sharing your story. What a journey you've been on, I hope they discover the "overlap" soonish, for your sake!
take care
Kate

Thank you Kate, I forgot to add my last crises I had I developed asphasia during it also, the diagnosing Neuro, said that was an other issue going on, it was temporary though. I could understand questions, but couldn't get the words out. I was stuttering, & I remember a skipping sensation in my brain, when trying to talk, it has to do with those damn lesions.

So sorry
 

Wow, that is sad indeed. I have been blessed in the fact, I was able to get Dr.s who knew what was going on. Although now that I moved south, Dr.s not as good with the whole MG thing and when ambulance came to my home.. they had the nerve to say I was having a panic attack :confused: Florida is not good for those with MG {I lived there a short time} I wish you luck with finding out what your other condition is. Turned out my other problem is Alpha-1, still not sure what that is..LOL. Good luck :grouphug:

Good Lord, Mary!
You certainly have been put through the ringer!
Reading your posts, no one would guess how severe your illness has been, except I saw the Mestinon dosage and about fell over.

You're amazing - I think I would be very bitter and it would show in everthing I wrote!
I too appreciate your posting your history. As Lizzie said, it is very important to share the information. One never knows when your experience can benefit someone, which is sometimes the only redeeming factor!

I hope you receive the best medical care possible - you certainly deserve it.

Thinking of you!

All I can say is you are all awsome here, you all provide such support & comfort. I enjoy learning from you all, & the chit - chat, is fun also. What a great forum !
Mary

HI Mary! Wow what a story. It is crazy what the body puts us through, oh and the evil dotors who dont know what they are doing. Your incident where the doctor thought you were having a stroke is very interesting to me. I had an "episode" where I was taken to the ER by my now ex-husband with a very similar problem. The ER doc thought I was having a stroke. My whole left side was limp and useless, from my face to my feet. I could hardly breathe, could not walk or talk. When my neuro came in, who was still on the fence as to whether it was MG, she said I had Pain Conversion Disorder. My body starts to shut down when I am in too much pain supposedly. YEAH Right! When I could talk again, which was only a few hours later, I asked her if that meant I was crazy. Her reply was yes, I mean not really. See what I mean by evil doctors. LOL. Anyway I just thought that interesting.

I think it is great we can all come here and talk about our experiences and problems. It is nice to have people that understand and care. I hope you keep sharing and have a great day.

Hey Mary!
 

Yeah I did, right after I was diagnosed, It helped my breathing, I am thankful for that, I couldn't walk across the room, without being out of breath. I have a severe overlap that is flaring right now, & it always gets my MG going also. Just need a high dose of drugs, to put it in it's place ! Which I am getting this week.