I hope this gives help and hope to those in limbo as I was for a couple of years. This is in 2 parts because my brain can't write anymore today but the next part will be how I am finally able to ride a bike again after 10 years of weakness. And I did it all without drugs.

My diagnosis started like this
Cleft Palate—Leukopenia—Thrombocytopenia—Fibromyalgia--Axonal Neuropathy—Myasthenia Gravis Ocular—Celiac Disease—Myasthenia Gravis General

My story probably begins at birth being born with an incomplete/cleft palate. I was lucky it was only in the soft part. I was one of the first to get it closed in our area. I was about 18 months when I was dropped off at the hospital for my first operation. My parents were not allowed to see me fearing I would rip the stitches from crying. I developed diarrhea and stayed for 2 weeks. Went in a happy fat baby and came home a skinny sad baby. I think maybe Celiac Disease started here. After that I was always skinny and could eat anything.

By eighth grade I had knee/bone pain that was unexplained lots of tests and no results. Also never had endurance for sports..tired easily and always always got a side stitch from running and never understood how someone could run through a stitch as I couldn’t.

After 3rd birth I started getting fatigued and a little gassy. I was also having some blood pressure issues even though I was skinny and ate healthy. When I was 37 my WBC went down to 1.9 and kept complaining of fatigue. Then they found low platelets but not that low 60 so started getting bloodwork more often and had 2 bone marrow aspirations only to find I was making platelets but they were being destroyed. I was still complaining of being tired and started getting muscle pain which was then dx as fibromyalgia. I refused drugs because I always have reactions.

I had 2 unusual reactions to Lidocaine. One was injected underarm and caused my BP to go really high and had stroke like reaction…could not talk, very weak. Second when in hospital for ulcerated esophagus and gave me lidocaine to drink to numb pain. On day 2 I did the same… BP up couldn’t talk or move. One doctor sent me to top hospital for testing as they didn’t believe this could happen. By third or fourth test prick my BP went up to 230/113 and was getting weak…doctor thought I made myself do this…LOL…gotta love them. Anyhow a med student looked this up and said this…” Also another intersting fact about lidocaine is that besides blocking sodium channels they also weakly block muscular nicotinic channels. These are the same channels that are destroyed by antibodies in M.G. So in theory everybody with M.G. would develop muscular weakness after a high local anesthetics dose. So there 's a cheap test for myasthenia gravis for you”.

Then one day in March 2003 I had double vision that lasted about 5 minutes and was checked for stroke but was negative and sent to neuro. Mentioned stairs were getting difficult and he said to ride bike that summer but found that difficult. Had a couple more double visions in late March but they stopped after that and mostly had blurry problems for awhile. By Oct all hell broke loose and I started having every neurological symptom you could think of. Found out I was B12 deficient and started Mega B12 and B complex. Thought this was my cure.

Oct 2004 Neuro did EMG/NCT which showed Axonal Neuropathy. March 2004 Sent me to CClinic where EMG positive but NCT not quite (very very cold room which actually negates that test) so they wanted to do SFEMG. Said testing was leaning toward MG. Did SFEMG in eye…my eyes were not drooping at this time and had not had any more double vision for a year. But my muscles that pick things up and my stair climbing muscles became very weak. SFEMG was negative in my eye. Doctors at Cleveland Clinic sent me home and said maybe blood problem myelodysplastic disorder.

In Sept 2004 went to a major MG doctor who was kind and thought I had MG until I said a dumb thing on the way out..my brain was a mess of course (said I think sometimes doctors wait for a catastrophe) Well, his whole body language changed and sent me a letter to see an endo and maybe I needed psychological support…not that I was Psychogenic but after seeing so many docs..that all patients like me would suffer some element of Post Traumatic Stress Disorder…WOW…that still punches me where it hurts….. because, through this whole mess I was always cheerful and positive…except for the day this letter arrived and went to bed and cried for 3 hours.

(When I finally was dx with Celiac Disease in June 2005 my neuro said he talked to this MG doctor…his friend…and they both decided…YES I did have MG general after all)

Kept getting weaker and muscles started wasting and my right eye started drooping later Nov 2004. Then my whole face started drooping and the fatigue was major. I was tired by 9 or 10 AM.

By January 2005 an Ophthalmologist diagnosed me with Ocular Myasthenia Gravis because of positive Cogan’s sign based on variable ptosis, diplopia and lid twitch.

I refused Mestinon because I already had trouble with emergency bathroom calls and didn’t need things to get worse in that area.

Meanwhile I kept reading and getting a couple messages about the connection with Celiac Disease and Myasthenia Gravis and Type one diabetes, which I do not have but have 2 brothers with it. So, went to my family doctor and told her I needed a couple tests as I was literally dying..down to 92 pounds, high and low blood pressure that no one would treat…had a couple small strokes that no one would address…MS symptoms, ALS symptoms, walked like I had Parkinson’s…would pass out while trying to eat…I think this was insulin problem

Anyhow my former family doctor told me I was looking for a disease and needed to go on Prozac and gain 15 pounds but she did do the Celiac test and later wrote it was negative and sorry about the talk. I stopped in and picked up test and found she only did Gliadin IgA and IgG. And one was positive…the IgA….With positive IgA you could have Celiac disease so went to Neuro and he said maybe I eat too much pasta…well yeaa but …so he sent me to Gastroenterologist and all tests were 100% positive.

My neuro was shocked…he had never seen anything like this….That is because he never looked…how many Myasthenia Gravis patients might have Celiac Disease too… after all they are all in the same autoimmune family??? How many of you have been tested for Celiac or Gluten Sensitivity?

On my next post I will write how I got better with no thanks from my doctor other than my new family doctor who would do any tests I asked for…well almost any.