Ive just received my diagnosis of MS on the 12th August. My next appointment with neurologist is at the end of the month. The only reason I know already is because when I called my doctor for lumbar puncture results I could sense she was hiding something so I asked for a copy of them. I am so afraid of what the future holds. Husband seems disinterested and I think my poor daughter’s sick listening to me. I’m desperately trying to hold it together even though my heads all over the place. I’m 47 and have just become a Gran which I was so looking forward to, now all I see ahead of me is disability. I know it’s going to take time to sink in. Thank goodness I’ve found somewhere to vent as I feel so alone
All of us on here have been where you are now. And here we are, adapting and coping. I qualified as a school teacher in 1990. I have been dogged by MS ever since. Even though I am now retired I am still able to keep going. It might be an idea to get your close family to read up about the symptoms on this web site. Because we don’t look any different it’s hard for people to understand. I’ve been though loads, including a recent marriage break-up but I am fighting and still baking my own bread-very important. I can still get out and about. Electricity is my friend.
I sincerely sympathise. At this difficult time you need to build the right support team of friends, family and professionals. In your position I would start with the professionals because they should understand the issues involved. If you can get a good MS nurse they should be able to get you supported by local voluntary groups, you will either gain some friends or get your friends involved. This is a good time to get family involved in supporting you.
I wish you all the best and hope that you get the right help quickly.
Ive been living with my symptoms for 11 years now. Was originally told I had a trapped nerve so I’ve just learned to live with it and have adjusted little things to cope. I had never been back to docs in all that time and then last year my foot started dragging when I was walking. My daughter nagged me to go to docs which I did in January. First neuro appointment in May and diagnosis a few days ago. If I’m honest I have always suspected MS but actually seeing it on paper has knocked me for six. I don’t know what type I have but I’m pretty sure it will be ppms as I’ve had no reprieve of symptoms in 11 years and they’ve just gradually got worse. So sorry to hear of your break up. If my hubby doesn’t buck up I’ll be in the same boat lol. Can I ask what type you have and how if any are the treatments. I know with rrms there are some treatments to keep things at bay so to speak but is there anything for ppms? Sorry to go on but being able to speak to fellow sufferers is therapy in itself
Here’s another gran with fairly recently diagnosed with PPMS. Less than a year in fact. As with folks above welcome aboard. It is THEE place to rant and share feelings and thoughts if you need to - good and not so good!
As you did I too suspected MS long before I got this news from my consultant neuro. The worse bit was being in limbo before they found lesions on my brain and spinal cord and PPMS was diagnosed. Although it was a bit of a shock seeing this in black and white it was also a bit of a relief after increasing symptoms over a few years.
As Mick suggests a good MS nurse is worth their weight in gold, as with OTs, continence nurse, practice nurse, etc. They understand your diagnosis and are so supportive with practical ways of adjusting to a life with PPMS. Nearest and dearest too are so important. Once they have taken on board that your type of MS does not necessarily mean “the end”, with life in a wheelchair from this point onward. We are all slightly different as to how our PPMS progresses and which symptoms show themselves and when. I’m sure you will adjust to these as they present themselves.
You and your family are in a wee state of shock at the moment. Please give yourself and them time to come to terms with your diagnosis and what this means for all of you. May I suggest that you take a deep breath and find out as much as you can about your PPMS. Please don’t become despondent and recognise that you will come through. You will have your emotional roller-coaster to work through. - -. This forum and the folks who write on it is as I have already advised - sorry for the repetition - has always helped me when I’ve needed it. I do hope it does the same for you.
Thank you for your words of wisdom. You’re absolutely right, I need time to come to terms with the whole thing. I’m so worried that I’m already quite far along and in the last year everything’s starting to fail quite quickly. I’m still working and will continue as long as I can if this horrible beast slows down a bit. I was an athlete when I was younger now all I do is trip over my feet and bump into things. I could quite happily saw my right leg off as I feel it doesn’t belong to me anyway.
i know what you mean Anne about it being a relief finding out what was wrong rather than thinking I was going mad. First appointment with Neuro it was suggested that my symptoms were psychological. Actually looking forward to seeing him again lol
suppose the next few months and beyond will be a roller coaster. Glad I found this site
Reading Steve, Mick and Annie’ contributions it looks like they’ve got it all covered. Here’s my contribution anyway.
The bit that stands out to me is Annie’s (it does not necessarily mean “the end”). Quite the opposite. I prefer to look at it as a new beginning.
There’s a common thread running through a lot of the attitudes posted here that, although none of us chose this as our lifestyle, we have learned how to live with MS and adapt our choices to the disease without letting it dominate our lives.
You’ve got a head start as you’ve already recognised that you have adapted to some of your limitations over the last 11 years. You have passed the “limbo” stage and are on the road that so many of us have already taken.
One of the above left something rather important out. Trained as a musician, MS robbed the fine motor skills necessary to be able to play the piano. I have tried to imagine what it’s like to have a talent, refined over eternal hours of practise, stolen in this way. But I won’t ever understand because I only got to Grade 2 piano. Although I can still recognise courage when I meet it.
That’s all it takes.
And there are a lot of people on this forum who can help you to find the courage you’ll need for a good life. It’s just different from the one you were planning for.
I so understand the rage with your leg, I have said many a time “If I had a chainsaw, the blooming (?) thing is coming off”
I was given a pearl of wisdom by an MS nurse during a fatigue management course… Do not waste valuable energy on anger and rage. They are perfectly reasonable feelings, and I still have the odd incandescent moment. We need to budget our energy really carefully and anger is not important or useful enough to qualify. They tried to teach us that our condition is what it is, you can’t do much about it but if you manage your reflex response you might have some energy for the more important stuff.
Much easier to say than do but it made a big difference to me. My wife also appreciates the reduction in my bad language.
I have PPMS and so far have no treatment for the symptoms. I spent a long time on Amantadine for the fatigue but I stopped it in favour of a good night’s sleep. Like you, I noticed foot drop early on although I’d had symptoms for many years before. Adaptation and delegation have been my way of coping. I’ve also had the support of Adult Social Care from my local authority and have claimed DLA for the last 16 years. I’ve always had the attitude that if I can do it, I will do it even though the fatigue has got me back the next day. But I never regret doing things. Honestly, despite fighting the beast, I’ve been able to get quite a lot out of life. I have kept a low profile with the neurologist because he always suggests something. I hate the hassle of out-patients’.
we have been walking in the same shoes. 11 years nearly for me, but i had my first symptom 2000.
Labels dont change who you are just be yourself and carry on and enjoy your life and grand baby. I have tried all the treatments for PPMS and non suit me, even the doctor at pain clinic said all they do basically is give us fatigue and wipe us out so we dont bother to do anything lol.
So i do my own therepy i have my little bantam chickens, and just enjoy the life i have. I take 1 2mg diazepam at night to settle me if i wake up in pain which i always do.
I am like you though i have had it so long i just cope with it my way now.
You will be fine hun. At least you know now what your dealing with.
My sisters mother in law was diagnosed at 40, and she had it until she was 82 when sadly she passed away but not from her MS, she had diabetes.
You have a long way to go yet hun and will enjoy your grand baby and see him grow and even get married.
The neuro i saw for a second opinion said i had chronic fatigue even though my neuro told me he doesnt believe in CFS or M.E. lol. He never even looked at my notes as he didnt have them. I would love to go back and ask him for money back lol.
Ive had a really teary day today at work. Just as well I work alone in a wee office. Blubbering wreck most of the day and I’ve come in from work and read all your replies. Honestly you have no idea how much better you have made me feel already
Hi & welcome. I still remember how tearful I was the first couple of months after diagnosis, I cried less as time went on but I still have the occasional meltdown I’m 46 now, diagnosed in 2012.
Hi there, from one mags to another. I have been dx 8 years now and it has been a learning curve. I thought I was sailing through this ms malarkey until 3 years ago when things started going downhill. That’s when I found this site. Whatever has been happening to me has been happening to everyone else as well. I have just accepted that I need a wheelchair in order to join in with everybody else. Not all the time but to go on walks and shopping etc.
I am not on any medication as I feel I don’t need anything yet and I still work part time, although not sure for how long. My goal is 60 in two years time.
My life is so worth it even though it is not what I thought it would be.
Don’t worry about crying ms causes havoc with your emotions. You will accept what is happening to you, but it will take time.
Im just back from Edinburgh and thanks to my daughter borrowing a wheelchair I was able to do everything they did and not be exhausted.