I don’t know if this will help with your decision making.
Good luck.
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You’re all really strong and inspirational. All I have is sensory symptoms and muscle spasms and a bit of foot drop and wonky balance. And that’s enough to be getting on with. Much respect to you for dealing with everything and being able to discuss and inform so clearly and calmly about some really challenging symptoms.
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Thanks Poppy, I may hold you to that
Hi Redman, thanks for your reply. It was only recently I found out that MS activity can be happening but we have no symptoms, I always thought I was ok if I didn’t have a relapse. It’s was only after my recent relapse I was told of the whole picture so to speak. Thanks again
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Hi reddivine, I was diagnosed coming up on 12 years and it’s only now DMD have been mentioned. That’s why I asking the question, to see how others manage their MS but from what I’ve read they appear help.
Thank you anonymous
Hi Space Monkey, I find this forum a mass of knowledge and inspiration
You said ‘all you have’ referring to your symptoms but you’re the one dealing / living with your symptoms the best you can, don’t put your symptoms down because everyone of us are fighting our own battle and ms sucks big time. It ain’t easy living with a label, no matter what our symptoms, what I mean is you matter and your symptoms matter and it’s hard so be kind to yourself. I know what I am trying to say I hope you do to (I’m not so good with word)
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When you are worrying about the side effects of DMDs, don’t forget the primary effects of MS - the ones the DMDs are trying to protect you from. Uncontrolled (or poorly controlled) MS can be a shocker, as I know all too well from sad experience.
Good luck with whatever you decide.
Alison
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It caused seizures and massive ones. Hallucinations! I was driving and the sky began undulating and swirling about.
I was looking out of the office window at work and the hills started walking around.
i was driving on the m25. I pulled onto the exit road toward a roundabout and prepared to,turn right onto the A127, the next thing I knew I was pulling onto the M11 - 15 miles further up and twenty minutes later. I do not know how I got there.
My personality changed and I was nuts in a very bad way, not a funny way.
I collapsed at work, talked gibberish and basically went gaga. I recovered in casualty and got sent home from work until it was sorted out.
All these things above are a small snapshot - I had nearly three years of this until I was sent to the OH health nurse at work and she asked me if I was taking any drugs. I told her I was on Avonex but she wasn’t familiar with the name. She asked me how I took it and I told her a weekly injection. Her face turned serious and she told me to go and see the MS nurse quickly, because she explained, a friend of hers had very similar trouble with an MS drug and it sounded the same to her.
Thats when I got sent home from work until I’d been to the clinic. I was taken off Avonex and recovered slowly.
New or worsening psychiatric symptoms are listed as one of the possible side effects. I’m surprised you endured that for three years and never brought it to the attention of your medical/neurological team. Glad you feel ok now.
It wasn’t that bad for the whole time, it crept up slowly.
I’m physically disabled now and I know which I prefer. I opted for no MS treatment EVER after that and took my chances with the disease.