Well to say this last year has felt like a rollercoaster ride is to say the least.
Last summer I started with symptoms which I convinced myself was shingles probably brought on by stress… Even the GP at first agreed but alas no rash. Then it started spreading from my back round one side of my waist to the front. Like a constant hug but being squeezed quite tight. It was the height of summer and one droplet of water from my loveable pooch’s beard sent a stabbing pain as water hit my leg.
My GP was brilliant lots of blood tests. Referral for MRI and saw a first neurologist who basically said get on with it until you get more symptoms, you’ve a 30% chance of it being MS. So roll on christmas and was referred to another Neurologist who was far for thorough. Evoke potentials and lumbar puncture ordered. A few more symptoms later and as of 6 days ago I now have the diagnosis of MS. The thought of some of the treatments is what is giving me the concern. The symptoms I have right now are doable, but I’m looking forward to asking more questions. I know it’s different for different people, but how poorly do the DMT’s leave you is the biggest one I want to ask. Will it mean mega changes to my capabilities? these and many other questions are rolling about in my head at present. Working Mum to two teenages (my very own Kevin & Perry!) and two hyper spaniels, my life isn’t often quiet. The biggest is working, I work full time self employed in a people facing environment, so it’s not something I can do from home. I am fortunate to say I love my work and the thought of giving it up, well it’ll be a sad day when/If i have to close it down. Right now I think my leg is agreeing with me, as i type this it’s humming away. Whomever has managed to read all this I’ve let spill out on here, I’m sorry! and Hello.
Hi LisaB. Sorry to hear of your diagnosis and sorry also to hear of the problems getting diagnosed. If it’s any consolation then your experience is by no means unusual. To answer your questions . My experience of MS started 18 years ago with Optic Neuritis ( lost vision in my right eye for a month or so). I was put on Avonex ( possibly the only treatment at the time) which I am still using. It leaves me feeling pretty rubbish for 1-2 days so, when I was working I did the injection on Friday evenings. I enjoyed my work and didn’t mind having quiet weekends resting. I carried on working for 4 years or so without any problems and only retired because my employer was trying to downsize and was offering a generous severance package and at the time I was only some 6-7 years away from retirement .
MS didn’t affect me much for 7-8 or more years but I then started experiencing problems walking- my right leg gave up after 30 mins or so. Now gives up after 10 mins or so. Apart from that and at the age of 70 I’m not too bad. Get tired/fatigued from time to time and I’m pretty much laid low / unable to do much at all in hot weather. Get the MS hug from time to time and if I need to pee I need to get to the bathroom quick ( bit of a nuisance but no catastrophe- so far!). These last 5 years or so I have found noisy and busy places a bit tiring - especially if they are warm/ hot - and difficult to concentrate.
Hope the above is of some help and very happy to answer any questions
Thank you so much for your reply. It’s good to hear how you found the early days and the side affects of the DMT was manageable. It’s all new territory for me, very concerned for the many unknowns. I do try to believe in fate and it sounds like you had a bit of fate with your early retirement severance package. Thank you again and I wish you health and happiness.
Lisa