Hi, I was diagnosed with MS just last week. I feel OK about it as I was told two years ago I had an 85% chance of MS when my legs went numb. Two years on I have had another scan which unfortunately showed two new lesions, but I actually feel really well.
The neuro was great and gave me a list of drugs, two of which he recommended to me. I have been on the MS decisions website (brilliant!!) and have come up with a few favs. Avonex is top of my list but I am worried about muscle injections!, I have done IVF before so injections are not new to me but into the muscle??? how would you know your doing it right? and I am also worried about the mood swings/depression? I have not had this before but some months can get serious PMT! and don’t want to get down.
Also how long till your MS nurse called you, I have waited a week now and not sure how much longer to leave it?
Anyone got any advice/help/tips? greatly appreciated.
I was dx last august 2013, talked about avonex straight away and started in December. Injection don’t really bother me, just quite mild side effects for the first 2 months now just take paracetamol an hour before and ice pack for 20 mins before injections no probs! We all have to make our decisions on what it best for us but my thoughts that if they were being offered and it would prolong my health a little further then why not.
welcome to this wonderful forum where you will get fab advice, and some pretty amazing jokes too!
I was diagnosed with likely ms April '13, and then told definately ms April this year. Had a meeting with neuro and ms nurse to discuss dmd’s and I decided on rebif. (Didn’t fancy injecting into muscle!)
I’m on avonex, it’s an auto injector so you put in on your thigh and press the button. I’m needle phobic and have been struggling so now my husband does it for me. It did take a while to get sorted. I was diagnosed in January and saw DMD neuro in feb, saw MS nurse and started injections end of march. The neuro service in Oxford has been brilliant though and my drugs are delivered by bupa and its all free! I have been feeling sad but don’t think it’s the drugs, just the whole thing. While I was being diagnosed and going through appointments to start treatment I just got swept along and thought I was handling it well. Now reality has hit me, I feel scared about the future and sorry for my family. Maybe I’ll be lucky and be one of those people we get told about that have MS with no ill effects into their 80s! Welcome though, this forum is great
Thanks for the welcome everyone.
Wilf - sorry your feeling sad, I feel scared about the future and I understand your feeling sorry for your family, I feel like that too. I too am seriously hoping I dont get any ill effects till I’m 80! maybe its when you do seriously start feeling the efffects that it really hits home.
At the moment I am well, walking, working, laughing and carrying on with life like nothings happened really, how else can you be? Wierd though isn’t it?
I just want to start the drugs asap so I feel I am doing something positive.
Vicky Sorry to hear of your DX, but welcome to the club. Regarding your MS nurse you can do what I did, self referral , just go to the top of this page, click " near me " and put your post code in and the name & contact number of your local MS nurse will be there. Gray
I got diagnosed 4 weeks ago Thursday … Took about 2 weeks to get nurse stuff through… Got a copy of the letter send to doctor and them and then nurse information arrived about 2 days later. Hope this is of some help. Because of where my neurologist is too. I have the contact details for the nurses attached to his neurology department at the hospital. I know there are ones closer but they fall under a different area. Lynsey