My MSAA Community
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Introduction

My name is Craig and I was misdiagnosed for about 15 years because my symptoms don’t match the textbook. A couple of years ago, I went to see “my last time I’m going” neurologist. He put the pieces together and told me that I have PPMS. Not great news, but at least it was something. I’m a musician, or at least I used to be, now it’s like having 3 feet and one hand. I still play what I can, but it’s kind of devistating to my attitude.

That’s kind of my story.

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Hi Craig, Believe me you are not alone. It took me going to 3 Neuro, 1 Orthopaedic, 1 spin spec, 1 vascular, 1 primary, physical therapist, 1 chiropractor, 5 mri's to be finally dx with progressive MS 6 months ago. I had 2 rounds of predisone infusion, had relief for 3 days. You should speak to your neuro about ocrevus. I finished my 2nd 1/2 dose last week and am feeling improvements already. My next infusion will be in 6 months & then every 6 months. Its very pricey -$64,000. - a year but the mfg has $ assistance program. I am only paying $45 copay. Once your neuro applies for you to receive assistance it should take about 2 to 3 months for approval. There is light at the end of the tunnel!!!!!!!!

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I’m glad you are getting some relief with Ocrevus, I’ve had a couple of infusions with Rituximab and one with Ocrevus.

So far, I have not seen any improvement.

I find it to be like snapping your fingers to keep tigers away. I’d really like to see something from it. Maybe the next one will do something.

Good luck to you.

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Hi CraigS , I've been on Rituximab [aka Rutixan] for about 3 years and just recently became stable. Often times you will not see changes, I haven't. Mostly all the doctors can do is treat the symptoms. But DMTs like Rituxan and Ocrevus are very important to be on since they attack the MS directly. Ocrevus is an excellent DMT in my opinion. Sorry for the dx of MS. You have found a great group here. I was dx in 2007 and have SPMS, though I believe I went undx since high school. I am now 60. I hope you find some help with your symptoms ~terry

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Hello CraigS, glad to meet you. I think there’re other musician in our group that struggle with some of the same issues and maybe they can give you their advice on how they cope with their MS. I want to learn to play the bass but I know that’s probably out, but you never know 🤔😀

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I was a pretty good guitar player, so now I’m thinking of taking up playing bass because I think my right hand can keep up. I still write songs and record, it just takes a lot longer. Someone made a comment about buttoning their shirt and how long that takes, I decided to wear t shirts as my main fashion statement. 😁

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ha ha ha, I too share your fashion ~terry

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Hello CraigS sorry to hear about all of your misdx's. It is unfortunate that it to so long.

Many people have that, or are going through that now.

I am glad they got to the bottom of it, although def. Not the answer anyone wants to hear.

What do you play?

Jes🌠

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I was a pretty good guitar player, but now I can just strum with the “foot” that has taken over my right hand.

I’m thinking of taking up playing bass so I can stay in the game.

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Hi CraigS nice to meet from across the pond xxx 😊😊😊😊

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Hi Janet from across the pond.

I hope things are going well for you.

Where abouts are you?

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Hi Craig sorry I've only just seen your reply I wasn't being rude....heaven forbid xxx I'm in Lancashire in the North of England 😷😷😷😷

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CraigS, it's Fancy1959. Being diagnosed originally with primary progressive MS is never ever less than devastating to an individual. I wish to send you support and hugs and let you know that we are here to offer any assistance we can. Over the past five years I have gone from relapsing and remitting MS to secondary progressive MS and that has been hard on me as well.

Be that as it may I would like to welcome you into this incredible chat room. You have found a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand what you are going through. This chat room is full of the most caring and compassionate people I have ever met and we truly understand the consequences you are facing because we face similar ones ourself. Anytime you need someone to speak to just post us because we are just that close and we would be happy to let you bounce ideas off of us or simply have a shoulder to lean on. Believe me we all need that from time to time and there's no shame in admitting that together we are stronger! Fancy.

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Thanks Fancy!

I’ve never been big on support type groups, but you can only go so long without someone else who understands how much this sucks.

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WOW Craig, i too am /was a musician, I can still sing! It's in my Joplin Blood, some say, i sound just like her!💝😃 i still try to play on my synthesizer too... Well, we R warriors! Jazzinco.

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Hello Craig – I hope your dr will find an effective treatment and you’ll be able to properly play your instruments. 😊

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Thank you Clover Princess.

My outlook is not that rosey

But I’m trying

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May god bless you 🙏

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Thanks for sharing a bit about yourself. I’m sorry about the diagnosis. I think many of us, though we dreaded any diagnosis, were somewhat relieved to finally get some answers and begin a DMT and/or get help with symptoms.

I struggle a bit to play piano now, but I’m grateful to play for a tiny (and slightly desperate?) church, who doesnt seem to be bothered by my limitations. We are always learning ways to accept changes and adapt the best we can. I’m in awe that you can write music, and I hope we will be able to hear a sample someday.

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Thanks.

I hope you can continue to play the piano for years.

Music is one of the things that keeps me going.

I also have been building guitars from kits to keep my hand working.

I’d love to share pictures with the community, but I don’t know if you can post pics on this site.

My songs are posted on SoundCloud (some, anyway). Feel free to give a listen.

C

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Thanks for the information on how to listen to your music! Is there a particular song we should look for or a name you are under? We'd all be tickled pink to see some of your guitars, too, so please post pictures. When you start a new post, you will see a button for adding pictures to your post. I'll be looking for some pictures soon!.

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I hope you will see some improvement as you continue on ocrevus. I'm sorry you are no longer able to play guitar as you used to. Perhaps the bass would be easier to continue with as you mentioned. My boys both play guitar and I have enjoyed endless hours listening to them.

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Thanks for the kind words Lois.

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