I just wanted to say hi properly to everyone here! I had a very grim day yesterday, apart from reading the Tesco’s joke I registered a while ago as ‘msali’ but changed my email and forgot my password, which is why I’ve registered again - I hope this is okay. My eyesight is very dodgy, so I can’t read much on the forum, but saw that someone was asking about DMDs yesterday, and thought I could contribute. I was finally diagnosed with MS a year ago last June. But I’ve been having eyesight and a host of other problems for years. And I mean years. I had surgery on what I thought was a ‘lazy eye’ in the early 2000s. Now the other eye just won’t work properly and the Opthamology Dept at QMC don’t want to do any further surgery as they think it’s MS and I’m inclined to agree. Also if another teenager (well to me) checks my vision and says ‘you’re a mystery’ (or words to that effect) I’d really lose my cool :evil: So, no more eye tests, this wobbly eye/vision thing is what I’m stuck with. Double vision caused my admission to hospital, MRI and lumbar puncture the same day, and the diagnosis of RRMS. Late last year my balance/vision worsened, which took me back to the QMC but just for a check-up and was recommended for DMDs. I have now been on Copaxone injections since early this year, and am so glad I am. I can walk, but with a rollator, and tire and have to sit down after about fifty yards. I sit, watch the world go by, and start again. But it’s cumbersome, awful for shopping in the village where I live, so I also have a wheelchair, which is very comfy and hubby (who’s now my long-suffering carer) pushes me around. As to the diagnosis, about 4 years ago I lost the sensation in my left leg, it flapped like a kipper, I was tested with the reflex-response thing in hospital but that was fine, so I carried on regardless. Hubby broke his foot and I was lurching about everywhere to keep us both fed! To complicate things further, I broke my leg many years ago and presumed my balance problems had something to do with that. Now, I shall be 52 in October. When I was diagnosed last year both hubby and I felt the usual mix of shock and relief. It explained the problems I have been having for more years than I care to remember. The fact that I’d turned 50 before MS was diagnosed makes me hopeful, and Copaxone makes me more hopeful as well. If I can live with MS for possibly 30 years before being diagnosed, I think I’ve done well. I’ve been in and out of hospital with severe depression for most of my adult life, so I’m taking Amitriptilline already which apparently helps MS but causes weight gain and eyesight problems, so it’s all been a Catch-22 really. My mum was diagnosed with Myeloid Leukemia a couple of years ago, my Dad had a massive heart attack and died just before last Christmas, so my sisters and I are trying our hardest to keep Mum as well as she can be. But it’s stress all the way these days, so please forgive me if I don’t reply sometimes or get involved as much as I want in the work of MS Society, I’m just caught between so many rocks and hard places hat I can barely think most of the time. I am a writer, but this is probably the longest chunk of writing I’ve done for the last couple of years. I hope to get more involved as time progresses, if the stress eases and Copaxone keeps helping. There, I’ve done! If you have, thanks for reading. - and best wishes to all of you, you’re stars!! xx
Hello Ali and welcome. What a variety of routes we have taken to get here! Yours sounds like a hard old road, and it is not helpful when life gangs up with other major stressors, just to make it interesting. I guess many of us are at an age when parents are needing more help, just as our own ability to provide it is declining, and that is not funny, I know. I hope we hear from you whenever you feel up to it. Alison x
Hello, and welcome (again!) Fingers crossed for you for the stress easing and the Copaxone keeping working Karen x
Welcome Ali and glad you managed to get back on. Condolences for your fathers passing. And I hope your mum is as well as can be. Take care and see you soon xx Maria.
You’re a star yourself Ali! Like you I am a late bloomer and really believe that if I can get through 50 years w/out MS then anther 30-40 with the MonSter is doable! Clarexxx