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going it alone

Just wanted to say thanks to you all for your support I have stopped all medication that the neurologist put me on and I feel grwat I now just take tramadol for my pain and they help with my restless legs so I definitely think going it alone is best for me my vit d levels are still low now 21 but they never gave me anything for that any ways I just take over the counter vit d and will continue any ways thanks again fir listening

I had to come of it also just LDN and meditation for me now better than the groggy feeling

I had so much pain while on the medication now just a bit of pain which tramadol works on and it helps restless legs

Hi, what meds have you stopped, if you dont mind me asking Littleone? I am wondering which caused you the pain.

Re restless legs, i take 300mg quinine at night for that and it does help.

luv Pollx

Gabapentin turned down have never heard anything about the dmt guess my areas not funding but wouldnt take it now as ive heard it wont help my everyday symptoms and never got no help with last relapse so guess im better off without poisoning my body

The eligibility criteria for DMDs/DMTs are the same in ALL areas - they apply nationally, not per region. So either you don’t qualify - which would explain why the topic has never been raised - or else you have slipped through the net.

It would be important to find out which, as even if you decide (like me) not to have them, you should have a clear idea what your options are. “Guessing they’re not funding in your area”, without bothering to find out, is not looking after your own best interests.

And what help did you want or expect with your last relapse? There’s not an awful lot that can be done, unless you wanted steroids, but were denied them? But I fail to see how your disappointment over that means you should now reject ALL medication. I’ll be the first to say you do not have to take something, just because it’s there - it needs to be an informed choice.

But to reject everything, just because you’re dissatisfied with how your last relapse was handled? Do you think you’re somehow teaching them a lesson? They won’t care if you say no to all of it; it’s far cheaper, and less administration They won’t be crawling to your door to apologise and beg you back. They probably won’t even notice. The only person to lose out will be you - and that’s coming from someone who’s consciously decided NOT to take everything offered (but still takes some of it!)

Tina

hi littleone

tina writes a lot of sense! i would descibe myself as ‘going it alone’ but not through choice. 11 attacks in less than first 2 years-no meds offered cos neuro said it was all in my head…2nd opinion confirmed diagnosis but still no meds offered and i didnt ask. 8 years later i remain only on ldn and vit/mins,cranberry caps and starflower oil. i have recently had 2 huge attacks leaving me with speech problems, mega cognitive stuggles and total right sided weakness. do i feel angry? no. do i wish i had taken dmds? no. am i happy with my decision? yes. as long as u can life with the consequences of ur decision then go for it but i do agree its best to be an informed one-which i done 3 ish years in and dont regret it at all-life is too short for regrets!

ellie x

It was my nurologist and ms nurse who advised about dmt and tokd me to discuss the options of what one with my other half and let her know my decision which I did. it was my ms nurse who informed me 6 weeks ago that it is no longer the local pct who agrees the funding and when she called to find out what was going on she was told they were still waiting for agreement on funding as for the way I feel it has more to do with what has gone on over the last few years not just one relapse im fed up of chasing people who cant be bothered to do there job properly in not stupid enough to refuse all help.

hiya,me again

i can completely understand what u say re folk not doing their job properly! its another f’ing eejit to deal with is now a recogised term between my gp and self! (i say,he cant!) i believe the reality is-no-one has the answers re ms! neuros cant agree amongst themseleves and when we are scared and desperate on answers they cant give us them. so it IS down to us with guidance from their expertese but ultimately its our body so our decision.

finally ((((((((hug))))))) for you. hang on in there…

If you qualify, and you WANT the DMTs (it sounds as if you did), then I’m afraid you can’t let yourself be thwarted by bureaucracy, and people not doing their jobs. If you don’t want them anyway, then of course that’s fine - not everyone eligible decides to go along with it. But if you’re missing out on what you really wanted, and you’re pretty sure you qualify, then walking away is not the answer. I know it’s hard, when even making a cup of tea feels like a chore. You don’t need a load of red tape to deal with as well. But nobody will look out for you as well as you do (except, maybe, your other half), so you need to make yourself heard.

What does your partner think, by the way? Are they happy for you to just let it go, or do they think you should be pushing? Can they do any of the chasing up for you?

Tina