I’ve been diagnosed for 25 years and my symptoms and decline were very much like yours. I also have a very caring husband who helps me, I feel very lucky to have him.
Hi, I’m another ppms sufferer diagnosed at age 58 (16 years ago). The specialist who gave me the diagnosis hasn’t been seen since the original diagnosis. However, I have had some excellent support from the ms nurses.
I have been in a wheelchair for 8 years, but I can still transfer. I do still drive a motability car, with steering roller ball and push/ pull accelerate/brake.
Self catheterisation is an every day occurrence, over 10 years now. Over night urgency has almost gone, due to oxybutynin and low dose naltrexone. I was recently prescribed simvastatin, not for ppms, however it has slowed the gradual but inevitable deterioration.
I recommend to any exmilitary personnel, even from many years ago, the organisation Mutual Support. That’s where I was first introduced to LDN.
Rgds
John B
Good morning – First post from me on this forum and the point of it, really, is just to say “thanks for the laughs” on this thread.
I don’t mean it disrespectfully but some of what has been written here has made me laugh out loud, and it has been such a relief.
Here’s a little bit of my backstory, I’ll keep it brief…… For quite a number of years (about ten) my local hospital has been running tests on me to check whether I have been developing Glaucoma. For an equal number of years, I’ve been trying to convince them that I haven’t got it and am not developing it and they finally admitted at the beginning of last year that I might be right. The consultant said that he would like to try on more thing before signing me off the tests, and that is/was an MRI scan.
Fine by me, said I.
Roll forward a few weeks in to the beginning of the pandemic (we were social distancing but not yet in lockdown) and I went for the MRI – a couple of weeks later my GP phoned to tell me that I didn’t have any signs of Glaucoma (hallelujah), but he and a neurologist he’d shown the scan to were fairly sure I had MS.
That was a bit of a bombshell at the time, as I’m sure you can imagine. My uncle had had MS ended up in a wheelchair and eventually died as a complication developed, although I don’t know what - I was relatively young at the time. And my youngest brother has MS, but not to the same degree as my uncle did. But me? How could I have it?
I had spent much of the last twenty years stumbling and tripping along pavements, sometimes struggling for balance, often feeling quite weary or sleepy, and very frequently feeling that my left leg (in particular) seemed to be giving up on me – it was so slow, and sometimes totally refused to do what my brain was asking it to do such as lift to go up a step or kerb, take a step forwards, etc. In all the years I’d struggled like this it had never occurred to me (or, seemingly, anyone else) that this could be MS. I think I just assumed it to be clumsiness on my part, or just a part of “getting old”. (I’m 61 now but, looking back, I think symptoms had been showing themselves since my mid thirties).
Anyway – back to me having a laugh at your comments –
It is such a relief to read about someone who carries a stick when they walk because if they don’t and take a fall in the street the presence of the stick shows everyone that the unfortunate soul might not be a drunk!
Someone who struggles with a knife and fork.
Someone who struggle to get in or out of a car.
Someone who has a leg which seems to have a mind of its own,
And many other things in the posts on this thread.
I know none of it is “funny” and I mustn’t laugh at people (I certainly don’t) but I can laugh at me and the experiences I’ve had because they are the same as yours and I now know that the next time I fall flat on my face walking along a pavement, there could be someone there who has done exactly the same thing multiple times and might be thinking “yep, been there, done that and got the tee shirt”. And the thought of that, as I get back up and dust myself down, will be a great comfort to me and, who knows, I might even be able to laugh at myself because I now know, thanks to you lot, that I’m not the only one and that there are others out there who can tell the same funny, embarrassing and painful stories.
Sorry for the long post, but thanks for reading and I hope I haven’t upset or offended anyone.
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Good to hear from you. Not offended at all. I’ve got lots of funny falls stories I could share, even a couple of tipped out of wheelchair stories! Maybe I’ll do a “falls” post sometime.
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