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.

Hello, llonghair. Sounds like you had a very long and terrible journey here. I am sorry for all your trouble.

I too have MG and autoimmune like intestinal issues. The gastro did an upper and lower GI on me but said everything looked oK. I still think I have Celiac or Crohns. What specific blood test did they do?

Just a very curious side note. I had chronic diarrhea 2-3 days a week and lost about 50 pounds in 6 months. I was afraid how the mestinon would affect my GI. But curious enough, all the bowel issue have stopped since I started the mestinon. I can't figure out why, but I am very grateful


kathie

Hmmm, sounds like you need the GF diet no matter what the gastro says.

Tests
Ttg IgA
EMA
Gliadin IgA and IgG
Endoscope biopsy

Did your doc do any of the above?

I have spent the past four years in your shoes. First two was told I was crazy
anxiety disorder, panic attack disorder, agoraphobia, depressed and any other label they could think of. Initially went to doc because hands were shaking and I had no energy. Here some xanax see ya. Buy the end of two years I was truly suicidal, ended up in hospital begging for help. I was sleeping 17 hours a day, hands, arms, legs were shaking from sun up to sun down. Couldn't walk , talk or think straight. Waking up in middle of night with right arm and leg moving. Long story short, was diagnosed with YOPD, lost health insurance 4 months later. So yep I am mental after being told it was all in my head for three years, can probably add PTSD to list of labels. Also was told at one point I was bipolar, I have no ideal who I am anymore. Three weeks ago met a person who was misdianoised with YOPD only to find out he had celiac disease. Like me his sypmtoms progressed quicker than normal yopd patient. So I have been attempting to go gluten free, still learning. All I can say is wow what a big difference in how I feel. I'm awake .
Tremors are 75% better, brain fog? Little . Still have no insurance so I am winging at this point. I am worried that from what I have read that I could have permanent brain damage or gluten ataxia. Through all of this I have blood pressure fluctuations also, 224/110 - 68/ 50. Also read about mood disorders can be caused by gluten, now I know why I been upside down most of my life. Right now I'm on small dose of bp med and two xanax a day. PD meds did not help, antidepressants caused suicidal thoughts. I do truly believe my medical problems are from gluten. Anyway that's my two cents.

50

Hi Sammy, so sorry you are feeling bad...here are some things that helped me get better besides mega vitamins and going dairy and sugar free. And whatever you do Don't do any fake synthetic sugars. I copied this from my other post and hope it helps

One thing I have done is read Dr. Mercola, Dr. Mark Hyman, Dr. Carolyn Dean and Mike Adams natural news. I am always looking for a better way to eat, better vitamins, things to make me sleep better.

One thing I started and I know everyone will say...that's not safe but I do think it might be for some. I read that we are all very deficient in magnesium. So, one day I tried some Epsom Salt in the bath and yes I did feel very weak the first time but made sure my husband was around. Then I did it a couple of times with more salt in the bath. I started to feel a little stronger each time and now I put 1 to 2 cups in almost every night and try to soak for 20 minutes. After I started this, I found I could ride a bike for the first time in years. Dr. Dean who is the expert said it is the intravenous mag we have to worry about.

The other thing I do every night is drink one cup of chamomile tea with 1 teaspoon of organic tart cherry juice. It relaxes and gives you melatonin all in one.

Any questions...just ask

Thank you so much for posting your story.. I struggle being in limbo land for 2 years now.. I do thankfully get IVIG which keeps me afloat most of the time, but I fear that I have a crash around the corner at any time.. I started with GI symptoms as well. weight loss, frequent bowel movments, stomach pains, then numbness tingling, weakness, ptosis.. then muscle wasting.. ugh.. I was already gluten free when they did all the testing.. and have a history of not mounting antibodies (to vaccines and known illnesses that I have had)..

I have been strictly gluten free for 2 years.. but now that I am spacing out my IVIG to every 3 weeks my stomach is flaring again... as are my other symptoms too.. but I have always been curious if I am a neurologic celiac.. I have other family members who have celiac, and a sibling with crohns..

as far as your muscle wasting goes - where was it, how bad was it? This is my most worrisome sign/symptom.. though the neuros don't see it (which I am happy about that)... and the emg is always negative thank goodness!

Hi, before my first double vision I could do lots of weights at the gym and was pretty strong. I did not have baggy arms...LOL

By the time I was diagnosed 2 years later I had no arm muscle left and baggy arms...makes me angry because they could have diagnosed me if they only had known.

With me, I think that the antibodies were definitely in my brain from the Celiac Disease or leaky gut...my brain felt hot...by head would go to sleep like your foot does...I would get a squeezing feeling...I even think I might have been having some slight seizures as my family was constantly calling me back to earth while talking to me...I would just zone out. I know I had some ADD or something too.

I still think my brain is not 100% but it is way better. I just posted about diet and maybe something might help you there. I hope so!