Hi,

I'm new to this site. Don't know what I'm doing or if this will work but here goes! I have been diagnosed less than 1 year with MuSk + Myasthenia Gravis. Never heard of it before I displayed symptoms in 2010. I live in Maine and am particularly interested in establishing contact with people from Maine who have the MuSk + diagnosis also. But would appreciate any contact from anybody not in Maine as well. As I'm not sure this will actually go successfully--I'll stop here for now! I am quite new to this kind of contact as I'm sure I will be proving to all. Not even sure how to send this...

Thanks!
Grace

Grace, welcome to the forum! The folks here are very helpful, knowledgeable, and supportive.

I sent you an email with a link to a blog, the girl who posts is musk+, I hope this helps some.

Rachel

Hi,

I am MuSK+, but I have a rare variant. So, not sure how helpful this will be for you. In any case I will be glad to answer any questions you may have (if I can).

Hi,

Thank you for answering. I was dxd by Athena Diagnostics as having Musk + MG in Sept. 2010. I didn't realize there was more than one kind of Musk +. The more I learn about this disease, the more amazed I am at its complexity. I have a wonderful Neuro and I am so blessed at how well I am doing. From the beginning I only had the bulbar symptoms. My arms and legs have been and are fine--thank the Lord. Right now it's my eyes that are giving me the most problem. I was recently dxd with dry eyes--just what I need! I have had bouts with double vision but thankfully they haven't lasted for a long time. I have been on 30 mg of prednisone for quite some time. When I went outdoors and there had been a temp drop to 7 deg. below 0--I got double vision. I was fine before I went outdoors--thought to myself how fortunate I was that I felt pretty much like my old self. (I live in Maine and I would love to find somebody with Musk + MG in Maine to talk to. I think I'm the only one!) My Neuro doubled my pred. fom 30 to 60 mg a day for 4 days--and my double vision went away on the 4th day. My eyes are light sensitive, get bloodshot if I'm on the computer too much and I have blood vessels that burst in them. Have had a history of burst blood vessels for years. My Neuro would have tried reducing my Pred. my last appt in March but I have a colonoscopy coming up in May and the last time we tried reducing my pred. I got double vision so I don't want any changes until after my colonoscopy. Then I'm sure he will try to reduce it. I'm currently taking 2000 mg of Cellcept a day and 60 mg of a generic for Mestinon 3 x a day. I am working full time. I get tired out but am grateful I can work. I need to for the medical insurance. One of the hardest things to all this is the difficulty of trying to plan what to do. Should I replace my car--things like that. If I have to stop working, I wouldn't replace it but if I knew I could continue working--now would be the time. No answers to it.

I've found such support on another site that has been such a blessing to me. There's a bond with people who you know understand without words about it all. I can see this site is the same. I need it that's for sure.

Thanks again for reaching out to me. Can't wait to see what happens if I actually get this sent right... Ho

Grace

Hello again Graced,
What is the other site that was helpful to you?
Thank you,
Julia

Julia,
Welcome to the forum, you will find everyone to be very helpful!!

I couldn't find an email address to send the link so I will post here:

http://sickofmg.blogspot.com/

Rachel

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

Hi, Julia

Because I'm not very "good" at this, I went awhile feeling very alone and only accidentally found the site I'm going to share with you. It is a wonderful group and I highly recommend it. I'm just going to type what is at the bottom of a message there and hope you can track it back. The name of the group is:
MG Climbing the Hill Together.

I just got a message that I cannot post links unless I have 10 posts--and I only have 8! If I get 10 posts, I'll try again!

Sorry it's not a clear direction...

Hope to hear from you and that you're doing well!

Grace

My husband was diagnosed sept 2008... we are very thankful that his symptoms are limited to his eyes....he was doing pretty good until dr tried to wean him off his prednisone...ended up back at square one. He is now on 15mg prednisone 3000 mg cellcept and 60 mg mestinon 4xs a day. the big change was when they took him off the prednisone...i would love to see what would happen if they tried upping his prednisone. cellcept has not seemed to help at all . he was on azathioprine and had good results but had a reaction to it so had to stop...

Hi,

Am pleased to receive a response from you. I started on 20 mg of predisone 9/8/10 a day. My neck was losing strength. That dosage worked well for about 3 weeks. I started on 30 mg of prednisone on 10/10/10. All I was taking at this point was the predisone and three 60 mg pills of generic for Mestinon. My Dr. wanted to put me on something like Cellcept and I didn't want to do it. So he put me on 40 mg of prednisone on 10/20/10, That was bad. I was like in a fog. I heard what everybody said etc. but it was like they were a mile away and I was slow thinking. I was/am working full time and that wasn't working very well for me. So I agreed to take Cellcept (1000 mg a day) and started that on 11/6/10. I cut back to 30 mg of Prednisone on 11/16/10. My neck got better fairly shortly and I've been on 30 mg of Prednisone ever since. Tried to cut back on the prednisone to 20 mg on 12/28/10 and by 1/6/11 deeloped double vision. So I increased Prednisone back to 30 mg and my eyes got better. On 1/25/11 Dr. increased my generic for Cellcept from 1000 mg/day to 2000/day. I have had problems with double vision and light sensitivity and one eye is droopy for quite awhile now. But my neck is strong and my Neuro said that is a sign the Cellcept is working. He also said eyes are the most difficult problem to resolve in MG. I was doing so well in March my Neuro would have tried decreasing the prednisone again but I had a colonoscopy scheduled in May and it seemed whenever we decreased Predisone I developed problems and I wanted to get the colonoscopy done before I tried that again. My last appt in May I was having swallowing issues again and a new symptom--lips wouldn't work well when I brushed my teeth and tried to spit. So he didn't want to decrease the predisone now. Said we would try to do that this fall and allow the Cellcept more time in my system. Something I have just started noticing is I'm bruising now. When I just took my blood pressure day before yesterday--where the cuff was on my wrist I have a nice bruise. Before that it was just very small bruises where I might have have a little pressure placed there. I am going to go on my MG sites and ask others if they've experienced this. I am wondering if it's the prednisone, the cellcept or a combination of both. I suspect it's because the Cellcept is starting to kick in better now. I started on the generic for Cellcept Nov. 2010. It can take a year before you see results from that. I had had my colonoscopy cancelled once because I got sick and had double vision so bad I was out of work for a week the end of Jan 2011. I think I was stressed about having to cancel this May colonoscopy and that perhaps was why my symptoms started to mildly come back and I even developed the mild lip stiffness. Since I just had the colonoscopy this week I can already see some improvement in everything. Stress and fatigue play with how we feel. I haven't felt really peppy for awhile but I intend to respond to Julia who I promised I would start at the beginning of my diagnosis and the meds I started on and my history of meds etc. up until now. I hope to do that over this holiday when I have some extra time to tackle it. I did it once and didn't know what I was doing on this site-and lost everything before it got out to people. I won't be leaving in the middle of creating it for a long time again! I felt so bad. But I am going to do it. With MG you can feel good today--and tomorrow be put out of work you're feeling so bad...

All I can say is--15 mg of prednisone wouldn't work for me! For me that would almost be like a maintenance dosage while the Cellcept kept increasing in its good effect on my body. I know my Dr. is VERY eager to get me down off my 30 mg of predisone and I won't be on that one day longer than I seem to need to be. I have about all the side effects of prednisone and I hate it--but I do really like being able to hold my head up normally. Life is so much better so I tolerate what I hate about prednisone. It's a shame it can take so long for meds like Cellcept to kick in. A year is a long time to waste on something that isn't going to work on you specifically. What works great for one of us may not be effective at all on somebody else. I would ask the Dr. if he thought increasing the prednisone might helpyour husband. Can't hurt to ask and have him explain why he feels the way he does. I wish you both the best! Take care...

Grace (Hope this goes successfully!)