asgoodasitgets 24/03/18
Last reply 3 weeks ago
weakness and fatigue

I’m new to this forum and very glad I found it. I just turned 64 and was diagnose in 2012, even though the 1st symptoms started when I was 16. We were so poor, my mother used home remedies. We had to be seriously ill before she took us to the doctor.
I’ve been so weak for the past 3 days. My legs tremble when I stand on them. I’m supposed to have another lumbar surgery asap, and I just had a cervical fusion in Dec. last year. I don’t know if the weakness is a coming from me needing the disc at L2 @ L3 fixed or a relapse coming on. My MS doc spends very little time with me in his office and the surgeon is brief as well. I’ve already had 5 back surgeries and I can hardly tell where my pain is coming from, the MS or back problems. I don’t have a secondary health plan and I get by on Medicare Disability, so it’s hard to find a doctor that takes it. I think I’m going to add some holistic remedies. Oh, I take Copaxone, 3 times a week. I’ve been slacking on taking it, though.

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grandma
1 month ago

Hi ashoodasitgets and welcome. I am 62 and have had the devil for 25 years that I know of but like you a lot of things fell into place from childhood (clumsy child, good at sports one day couldn’t catch ball the next etc.,) I gather from your comments about Medicare that you are from across the pond, I have just been swapped to Tecfidera after 23 years on Beta Inferon but I understand. missing doses us not a good idea, all dmd’s are supposed to hit the ms hard and fast, they can’t do that if you don’t take them! Try power naps for the fatigue, works for me😍


vixen
1 month ago

Hi there @asgoodasitgets, what a story you have! I think one of the toughest things about having MS is that it’s easy to forget that in addition, our bodies experience the same aches, pains and degenerations as other people. I find that everything I experience can be attributed to MS and, when you add the natural ageing process to that, how can you separate what is what?

When did you last have an MRI? We forget in the UK how lucky we are, not having to pay for these things. Please make yourself take the Copaxone regularly, it’s a bit like,e with antibiotics in that you have to take a full course for it to work. I’m glad you found his site and hope you get all the help and support you need. Good luck with the surgery x


aabreu
1 month ago

Hi @ashoogasitgets
Welcome to the group. We are just a bunch of commiserating MS folk. It seems like there are mostly UK people on this site. But that’s ok. I’ve learned that although seeing a doctor in U.K. can be difficult to arrange, you eventually get to see one. They also have more treatment options. In the USA, money can buy allot of doctors visits… but the FDA controls the treatment options. I have yet to find a doctor that would offer cladribine off label. Also, if you need a stem cell treatment, the only way is through a medical trial…and very few people are selected for that. This turned into a rant. I hear your situation and I can’t help think there is something wrong with our way of doing things. Especially when a child is left behind. It makes me sad.


stumbler
1 month ago

Hi @asgoodasitgets and welcome.

Bear in mind that stress can play a major part in MS progression. With another potential bout of surgery on the horizon, you’ll need to be careful how you manage that.

Take care.


asgoodasitgets
1 month ago

I’m having a hard time posting. But whoever reads this, thanks a lot for your response. Right now the pain is crazy and I don’t know which doctor to call, the neurologist for MS or the neurologist for the back issues. I may just get someone to take me to the ER just to get morphine for the pain…!st, let me pray before I do anything!


stumbler
1 month ago

@asgoodasitgets , well, this post has arrived successfully. 😉

It is important to determine the cause of the pain, so that it can be treated correctly.

The pain could be physical from your back problem or physical due to postural or gait problems, caused by compensation for MS weakness. Alternatively, it could be neuropathic, caused by the MS.

There’s some details about pain in MS here :-

https://www.mstrust.org.uk/a-z/pain

Morphine is obviously the ultimate answer, but may leave you feeling out of touch with reality………….


leighlincoln
3 weeks ago

hi asgoodasitgets.

Your story sounds something like mine. I ‘m 79 years of age and reckon I’ve had ms since I was 19. I was diagnosed at age 60 with r/r/m/s until last year when I was told I’m now s/p/m/s/ There certainly weren’t the tests around then as there are now but I’m all fine, still walking, with stick, and have usual problems with bladder etc. Starting new drug OCREVUS next week so have everything crossed. Hope you are as well as can be
take care
Pat x


tessa
3 weeks ago

Hi @leighlincoln your story sounds quite similar to mine. I will be 70 next year and was diagnosed at 16 but no symptoms or relapses for over 40 years ..now apparently SPMS .never heard of that before…but still getting about .I see you are based in Australia and am interested that you are getting Ocrevus . In the uk it has not yet been approved by NICE and I am not sure that it will be available for SPMS . I am also fairly sure that if approved it will be age restricted ! So interested to hear your experience
Tessa


leighlincoln
3 weeks ago

Hi Tessa, I will let you know how I get on with Ocrevus. Started on Avonex then Tecfedira so looks like the last chance saloon. Fortunately I read what I’d typed. Would you believe that 7 times I’d typed words with the right letters in the wrong order that’s a new one on me. Note to self, always read before posting lol

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