Hello all I’m new on the forum and not sure if I should of introduced myself somewhere else first. But I have just had my diagnosis of primary progressive ms, and although I have read as much about it as I can I’m still not sure what to expect. At the moment I’ve got constant pins and needles in my hands neck pain, cramps in right leg and my left knee is killing me but I’m told that may be something else. I have noticed that I have short term memory issues but not all of the time and occasionally I have the odd stumble. Just waiting now to speak to my allocated ms nurse dr has started me on pre gambling at 50mg to be increased weekly to 600 mg just thought it would be best to speak to you guys who know what’s what
Im just going through the diagnosis process so cant offer any advice. but just wanted to bump your post up in hope that someone will be able to answer with some advice.
Hi
although I was originally diagnosed with RRMS I have recently been re-diagnosed with PPMS. It has been a year now since my first diagnosis and I still dont understand it. Im not on any medication but I do take Vitamin D supplements. I cant really offer any advice to you as I dont have any answers. All I do know is that you have to ask lots of questions, make lots of phone calls, keep chasing to finally get answers. Spend hours researching the Benefits System to find out what you are entitled to.
Good luck to you.
Scudger.
Hi Drummer Boy… and Bob and Scudger! Welcome to a gang that you would not have chosen, but you’re here now and you’re very welcome.
I think people who are first diagnosed with PPMS, or think they will be, think it’s the worst type of MS going! That is not necessarily true. RRMS can be aggressive and worse than PPMS. Yes, some people with PPMS will have it progressing quickly but MOST of us progress at a slower rate… it can even stop progressing!
I was diagnosed with MS in 2006 and PPMS in 2008, so nearly 11 years for me (had ignored symptoms for years before though). It did seem to progress quite quickly for the first years… maybe for about 7 years… and I use a mobility scooter or wheelchair outside although I have quite good mobility indoors on ground that I know well. Put me in a strange place and I can barely walk at all. Some people will still have good mobility for rest of life even with PPMS! See, different for everyone.
But I think that I haven’t had a lot of progression over the past few years, so things seem to have ‘plateaued’ for me which can happen with PPMS.
My ‘top tip’ for dealing with your new diagnosis (or possible diagnosis) is to take it one day at a time. Try not to think of what the future might hold as really there is no way of knowing (but isn’t that the case for every human being on the planet with or without MS?). Deal with the symptoms and the information you have today.
Remember also that symptoms can come and go, yes even with PPMS, so what you have today might be gone next week. That is precisely why it’s important just to focus on today.
I hope this helps. Really is a great gang of people on here. I’ve taken a little break recently but I’ve come back as miss the folk on here. Good friends although we’ve never met in person.
All the best,
Pat xx
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Hi Drummer boy, bob and scudger,
Pat has given you the very best of advise! It can be a nightmare but the best way of coping is to live in the moment, not worry about the future and not dwell on the past, not easy at first but like those of us that have had this wretched disease for donkeys years can attest it’s the only way to cope.
I wish you all the very best and I welcome you to the club nobody wants to join! There are loads of people on here that understand and will try to help or simply listen and understand when you need to rant!
Take care,
Nina x
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Thanks for the replies guys, I also suffer from bi-polar type2 and I have been told there is a possible link between ms and the bi polar so looking back over the last 10 or so years it’s possible there may have been ms then I really don’t know. The pins and needles in my hands have gotten worse since last September and the random patches of pins and needles have started in the last month or so same as the leg pains. To be honest I don’t think it has quite sunk in yet.
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