[Graced]

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

[craftyRCC]

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

[alice md]

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).

[Annie59]

Welcome Grace. Knowledge and support from groups like this gave me so much thru this time of so many changes. You did fine with getting the message thru. It will get easier.

Annie59

[Graced]

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

[Graced]

Hi, Annie

Thanks for making me feel smart! I don't think I fully realize that most of the time I don't feel smart at all. I do like this site very much--and will be a part of it as much as my eyes will let me... I work full time and much of my day is on the computer to begin with so--my home use depends on how my eyes are feeling and I much prefer this to work computering!

I have some things I need to get to here. I peter out quickly evenings. Hope you have a great evening, Annie!

Thanks for your friendship,
Grace

[ukiahcookie]

Hello,

I see that you were diagnosed with MuSK type MG. I just got out of hospital (18 days) where I was diagnosed with same. I am on 50 mg/day prednisone and am waiting to see specialist.

Would you share your treatment history with me as there is not a lot of info for us MuSK folks.

Anyone else out there please weigh in

Hoping you are healthy,
Julia


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[/QUOTE]

[ukiahcookie]

Hello there,
Would you also share the link that you sent Graced?
thank you,
Julia

Originally Posted by craftyRCC

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

[ukiahcookie]

Hello,
I have not heard about more than one type of MuSK. I am MG MuSK but how many varients and does Athena test for such--are their treatment differences based on the type of MuSK? Oh boy, thought this was going to get a little simpler.

Thank you,
Julia

Originally Posted by alice md

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).

[ukiahcookie]

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

Originally Posted by Graced

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