Hi, Julia

This is Grace. I'm the new person who had trouble responding to a message you had posted. You were wondering about others who have MG and what their treatment had been. Here is mine with apologies for being so long getting back to you. Hope it goes this time correctly. If you have any questions, feel free to ask. I have never been without choking issues--it's just the degree I have it and I struggle with eye issues. Which impacts how much I can get on my home computer because I work full time--on a computer a lot.

Here goes:

Diagnosis: MuSk Positive Myasthenia Gravis MEDICAL HISTORY

Displayed symptoms of both serious choking and slurring and saw my PCP first on 6/30/10. The next morning I was at my new Neurologist's office as his first patient of the day.

7/1/10 - Started taking ˝ of a 60 mg pill of pyridostigmine (generic for Mestinon) 3 times a day. Had immediate improvement in swallowing but speech still slurred on 7/8/10. Started taking four ˝ pills a day on 7/11/11. By 7/13/11 I was not slurring.

Bloodwork sent to Mayo Clinic for Myasthenia Gravis test came back negative. Stopped taking pills around 7/18/11.

August 2010 Could clearly see fatigue affected my swallowing and speech. I was not taking medication and developed double vision at end of busy week. (Working full time) My Dr. sent more bloodwork for testing but this time also sent it to Athena Diagnostics.

Started taking whole 60 mg pyridostigmine pills 3 times a day.

Had an EMG Test done on one leg, one arm and tongue. Had a chest X-ray.
EMG test ruled out ALS Disease. MG a possibility. Chest X-ray fine. An MRI was fine.

Was choking and tongue rubbery feeling and slurring so by end of month increased to four 60 mg pills a day of pyridostigmine.

By end of August my neck was losing strength.

9/3/10 Got a diagnosis. Mayo Clinic came back a second time with a negative diagnosis for Myasthenia Gravis (MG). But Athena Diagnostics came back with a diagnosis of MuSk Positive Myasthenia Gravis. They are the only lab in the country who can test for that specific type of Myasthenia Gravis. Typically only women get it and unlike other types the number of antibodies in your blood does indicate severity of the disease. It is so rare Athena only runs the test once a month—it is a very expensive test.

Got put on 20 mg of prednisone daily. Very quickly my neck strength showed improvement (a week). But after two weeks my neck started to be a little weaker again. The pyridostigmine helps the prednisone to work—need both.

After (1) month prednisone was increased from 20 mg to 30 mg daily. Two weeks later increased from 30 mg to 40 mg. Had swallowing/choking, weakened neck issues still.

Nov 2010 Started taking 1000 mg Cellcept a day. Half in morning and half at night.

Decreased prednisone from 40 mg back to 30 mg daily. I have round face and red areas on face and neck from the prednisone.

Got a flu shot and will take the shingles vaccine when my Dr. receives it.

Taking four full 60 mg pills of pyridostigmine a day.

12/1/10 Neck doing well. My gums are sore, teeth are sensitive to cold-even cold air/breathing it in.
Skin is dry and easier to split and slow to heal. Dr. thinks Cellcept is helping neck.
Cut back from 4 to 3 60 mg pyridostigmine pills daily
Taking 30 mg of prednisone daily.
Taking 1000 mg of Mycophenalate Mofetil (generic for Cellcept) a day (split in half am/pm)
Slurring good, swallowing issues much improved.

Jan 2011 Developed double vision after reducing prednisone from 30 mg daily to 20 mg because I was doing so well. Took about 9 days to develop. Increased it back again to 30 mg and eyes improved in abt a week.

Did well until big temp drop to -7°F one morning. By that night had double vision. Next day was pretty bad. Got put out of work for a week and had my prednisone doubled from 30 mg to 60 mg daily for 4 days. On 4th day double vision stopped. I went back to 30 mg of Prednisone again the next day.

Feg 2011 My eyes bloodshot and uncomfortable. Dark glasses worn indoors really helped comfort of eyes. I work at a computer screen daily at my job... Had annual eye exam. Have dry eyes. Dr. gave me Refresh eye lubricant eye drops. Does make my eyes feel better.

Mar 2011 Doing well—neck strong. Swallowing best it's ever been. No slurring.

Apr 2011 Broken blood vessels in eyes and bloodshot. Working at computer more, stressed and tired.

May 2011 Going for a sleep apnea overnight sleep study in June. Have a lot of trouble sleeping. If I get 4 hrs sleep a night it's a good night.

June 2011 Had a bone density test done. Side effect of Mycophenolate Mofetil (generic for Cellcept) is osteoporosis. I haven't gotten the results yet but indications were I was OK.

I am scheduled to have an overnight sleep study done for sleep apnea this month.

The goal here for me is to get me off Prednisone and all the other meds and have Cellcept alone take care of my symptoms. I must pretty much have all the side effects of Prednisone--thinning hair on my head, difficulty sleeping, hump on back of my neck--you name it... Prednisone is both good--and horrible. I really want to get off it as quickly as possible but it can be difficult. 30 mg daily is getting up there in dosage. Some people only take 5 mg or so every other day...

But it's not what I wish that happens... Again, I'm sorry it's taken me so long to get back to you. I always have to say--I'm not fast--just dependable!

Best of luck to you, Julia.

Grace