Hi! I’m fairly new on here and although I pop in and out, I sometimes daren’t as I’m left feeling so depressed afterwards. I’m not sure why; it ought to help, but mostly it doesn’t!
I was diagnosed with secondary progressive MS in my early 60’s as I had developed difficulty walking from around the age of 58. I had minor symptoms since my 20’s, but in hindsight none of the medical profession believed me at the time. My local neurologist still isn’t 100% sure it’s MS, but I sought a second opinion in another county and MS was decided (both authorities still don’t agree)
Anyway, it is what it is and my reason for writing today is just to say that most of the posts on here relate to MS sufferers who have wonderful partners and family support or appear to be taking lots of different medications. Neither of these apply to me. I live alone without helpful family or neighbours and do not take any medication (except vitamin D and B12 as suggested by the GP, not the neurologist).
I do appreciate reading other posts, but I wonder whether there are others out there in a similar position to me. There don’t appear to be many MS sufferers without fantastic help available lol! Don’t get me wrong, I’m so pleased you have. I am really a ‘cup half full’ person, but can’t seem to relate to the posts on here.
Hi Katie
Really really sorry to hear that you are struggling. If it makes you feel any better ( which it probably won’t) I have a supportive wife but I - and I guess others with MS - do worry that if and when MS becomes a major problem, will she still love me, will she still care or will I just become a burden, just something that is stopping her from doing what some of her friends do as they travel off on various holidays. I hate the thought that perhaps one day she will have to help me with everything. Hopefully it won’t come to that . I’m only saying all this in case you feel that everyone else is enjoying ‘the good life’ while you are
One thing that has helped me an awful lot during the 18 years since diagnosis is a book and Website called Overcoming MS (OMS). It’s not a ‘quack’ cure so much a suggestions/ recommendations on what you can do to help your body deal with MS - diet, meditation, exercise, vitamin D ( plus whatever DMT you are on). It’s all the work of an Australian Professor of Medicine who has MS - as did his mother. The website includes various videos, online seminars and stuff and there are UK based meet ups and conferences.
On the topic of meet-ups , is there a local/ regional MS Society group in your area? The one in my area meets up for lunches, chats etc.
All the best
Hi Katie , so sorry you are dealing with this on your own. However I come to this place despite my amazing wife.
People here have actual knowledge of symptoms , feelings and some solutions for me that I can not get elsewhere. I suggest you pop in mooch around and you might feel a little more supported. All the best Mick
Hi! Thank you so much for your reply. When I re-read my post, I wondered what on earth I had done sending it! Anyway, I appreciate you taking the time to read it.
I will certainly look up the website you suggest and if there is a book too, then I’ll search for a copy of that. It will be interesting to read from another MS sufferer’s perspective.
All the best to you and your wife.
Hi Mick
Thank you for your reply and taking the time to read my post. Yes, I will have to browse on here and hopefully find something to be positive about!
Regards
Katie
Yes me, but I have a wonderful husband, recently diagnosed with Alzheimer’s……. no need to expand on that. I’m 67 diagnosed aged 49 PPMS, though I’d symptoms going back several years too. I’ve never seen an MS nurse, though I’ve spoken with them by phone. My neurologist is abrupt and my last annual review was almost two years ago. That was by phone because of Covid and he was on the phone for a whole minute. The one the year before was much more in depth - three whole minutes. Never been offered any meds other than amitriptylene which is an antidepressant prescribed for pain. I wasn’t in pain or depressed, but it helped me sleep so 18 years on I’m still taking it.
We have no family, nearest relatives being cousins who I’ve had no contact with in decades.
Friends say if you need anything, just ask. I don’t like asking. Some promise to visit/take us out, but it doesn’t happen. However I do have just one friend and her daughter who say instead what can we do, but then I feel bad because it’s always them bearing the burden.
I try to see the positives, such as I feel well and I’m not in pain, and I don’t have to contend with being poor and disabled.
I think I know how you feel. I’m here if yuc want to talk or just vent.
At least on here we have each other and understanding.
Hugs. Eve
You’re not alone. Many with MS face similar challenges. Would you like resources for those without extensive support?
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Hi Katie, I too come in and out of the site and sometimes I feel better for having done so but mostly I feel the same as you. I’m in a wheelchair now after many, many years of trying to manage to keep walking. I’m also on my own since my husband died. I have a sister who visits and helps when she can, but she’s older than me and is not in the best of health herself. I feel abandoned by the NHS as the neurologist stopped seeing MS patients as the Hospital Trust had financial problems that was in 2011 and I don’t have a MS nurse either - abandonment isn’t easy. I was never offered DMD’s when I asked about them (way back) the the neurologist said I couldn’t have them on the NHS, but he had a private clinic! I said I wanted them under the NHS (I still believed in it then). I said I should be able to have DMDs as I was diagnosed RRMS so he said I’ll record you as Secondary MS now and there are no DMD’s on offer for that! Abandoned I feel completely abandoned. I try to avoid reading posts from those deciding which DMD they should chose or whether they want them - as I never got that opportunity. I’m pleased they are getting the opportunity but it still hurts that I was abandoned and not offered anything that might have slowed my MS down. So my body is not good, it doesn’t work, but my mind works so well and most of the time I am a happy soul.
MS is hard to live with, I hardly get out of my house these days, but I have some good days amongst the hard days. So I think I fit the description you outline for yourself. And I feel much like you do - we are here though and have to make the most of it I guess.
(((((BIG HUGS))))) Mary
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Mary,
I love the fact that you are “a happy soul” “most of the time” and “make the most of it” despite a nasty combination of circumstances. There is little to be gained by getting angry about poor past circumstances. When I had RRMS there were no DMD options and I also had a couple of naff neurologists who were happy to tread water. I used to think “what if and if only” but that made me miserable and burned up valuable energy.
Subsequently I found a positive and proactive neurologist who was happy to research drug trials and offer me some options. I felt loads better trying to do stuff and maybe the trials have kept me going. Wishing you all the best Mick
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Thank you Mick , I do still wish I had some help from the NHS but I don’t apart from a brilliant GP, though he admits he knows little about MS.
That’s life…
I think it’s odd that they can give Covid vaccinations that haven’t gone through clinical trials, but can’t give DMDs to people with MS even though clinical trials have been undertaken.
It’s all a farce.
Mary x