Hi all, I posted many months ago when I was in the initial diagnosis stage. Well… 2MRI’s later, a lumbar puncture and what seems like punts of blood for tests I have finally had a diagnosis of MS. With almost 12 months of continual problems which have progressively worsened and plus my age… 45 … I know before I am told it us either secondary or primary. I have come to terms with it and have just seen my wonderful M S nurse but still fear for the unknown. I’m trying to be positive but the discomfort and pain is very distressing at the moment but being addressed. I suppose my question is… With no real treatment available what alternate therapy would people reccomend. I have already adjusted my diet thank you in anticipation x
Sorry to hear about your diagnosis…I was diagnosed last august. I’m primary progressive and aged 57
I also have Psoriatic arthritis, so things get a little complicated for me regarding symptoms…I never know which condition to blame
I’m personally trained in Reiki, I’m planning to have a few sessions soon. Massage may be helpful for you also…anything that promotes relaxation.
I’m sure your MS nurse, will be advising you regarding medication, suitable for general and potential neuropathic pain??
Other people will no doubt pop on tomorrow and give you some more ideas.
I just try and take it one day at a time.
I’m sorry to hear about your diagnosis. But please wait to hear what is said (Didn’t they tell you which type?), and not just assume it’s progressive.
(a) Diagnosis in the 40s is by no mean always progressive (I was diagnosed mid-40s with RRMS, and it still is that now, to the best of my knowledge), and (b) relapses can last for many months - I’ve had one lasting a year. The fact it doesn’t improve in days, or even weeks, doesn’t prove it isn’t a relapse, and therefore that there is no treatment for you.
It is uncommon to be diagnosed from the off with secondary progressive, as that would imply you’d had a whole history of relapsing remitting first, that somehow never got diagnosed. I’m sure, if that were true, you’d know about it, as you’d be able to recognize the relapses with hindsight, even if you hadn’t at the time. It could be primary progressive, but I still wouldn’t put money on it. You may just have had a long first relapse and/or a lot of residual damage from it. RRMS does not mean: “no symptoms outside of relapse”, unfortunately. Some people do recover completely, but there’s never any guarantee, and it’s common for some damage to be permanent.
Have you asked outright what type it is, and about the possibility of treatment, or are they still sitting on the fence, to see how things develop?
I’m new to the forum so this message will have to go through moderation before being posted. Hopefully you can see it eventually. I’ve just been diagnosed with MS. I’m writing this in the neuroscience ward at the John Radcliffe hospital, Oxford. I’ve had symptoms since jan 2013 (although I didn’t know it until May 2013). It started with double vision in January to march, then pins&needles and numbness from April to October and 2nd relapse of same from December to now. I’ve had 2 MRI scans which showed lesions in my brain and inflammation on my spine and a lumbar puncture was positive for MS so I think I’m unusual in that I have a definite diagnosis. The LP was horrid being poked with a needle, hitting nerves but worth it (I think it’s best when you’re of slim build otherwise they need to use an X-ray to guide the needle). I’m being treated with steroids to try and stop the relapse symptoms. There is another treatment that will stop the relapses altogether but they like to save that for further down the line because eventually you become immune and it stops working. Hope this helps when the moderators release it. I have a scientific background so luckily understand most of what they tell me
I’ve just been diagnosed with MS today too. I am nearly 49 but have relapsing remitting MS, so don’t assume because of your age it is primary progressive. It took me months to start improving from my first episode, but each relapse since has had a quicker recovery time. You need to be told what type you have.
I’m 44 and newly diagnosed with RRMS. My second relapse lasted at least 3 months and was still left with residual symptoms after that. I had one week in December when I had no symptoms and then I got my 3rd relapse.
Hi all, I am due to see an MS specialist next week to see if there is any disease modifying treatment for me. I have had continual worsening symptoms for over 12 months and yes… With hindsight I believe it started years ago but with ignorance and that just get on with it attitude I was brought up with I did just that and put it down to various things… Even when I ended up of work for a month. I’ve seen the letter from my neurologist who diagnosed me to the ms specialist and it paints a doubtful picture for the treatment but my M S nurse has sent me to neuro physio and OT as well as the tweaking of my painkilling drugs… Which at the moment aren’t working. Thank you so much for the replies…I am grateful for all info. Wayne
Hi all, I have just been diagnosed with RRMS. I’m 45 and have had 4 relapses over the last 18 months, 3 within the last 4 months. Like you Wayne there are incidents in the past that might also be related, but same as you I just shrugged them off and got on with things. I’m quite relieved to now have a formal diagnosis, MRI and Lumbar Puncture after the 1st relapse 18 months ago suggested MS but until further relapses and 2nd MRI my neurologist would not definitely confirm. We have talked through treatment options but not made any decisions and I have not seen my MS nurse yet. It’s nice to know I am not the only one and reading everyone’s replies is really helpful. Elaine