Last reply 3 years ago

Hi all, just wondering if someone could answer my question please. September 22/09/2014 I got diagnosed with MS took one relapse pin needles down right arm feet! Rang my ms nurse she got me down to talk about my medication but she’s not starting me on anything till February 3rd? Could someone please tell me why they wait that long after been diagnose? Many thanks hope everyone feeling good! Bernie x

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3 years ago

Hi @bernie
I had to wait a while when I started my first medication (extavia). Depending on which medication you are going to be on it isn’t necessarily your Ms nurse that will be providing the medication. Some of the pharmaceutical companies that supply the medication have their own specialist nurses(Bupa) that show you how to inject for instance on your first treatment and after that it just gets delivered directly to you. Obviously there aren’t a lot of these nurses that only deal with DMDs so it can take a while to find a suitable time where they can manage to see you. If you have any worries about how long it is taking you should maybe ask your MS nurse. Hope this helps and good luck

3 years ago

Hi @bernie, I think you’ll find that it’s the wheels of bureaucracy that revolve slowly.

it’s not just a question of writing a prescription, they’ll need to get funds allocated by your local clinical commissioning group (CCG). The CCG only meet so many times throughout the month.

Then there’s the logistics of ordering the medication and getting you the correct level of education regarding it. Dependent on the medication, there may be a need for you to be monitored for a few hours after your first dose – so more organisation….

Which medication are you going to be taking?

3 years ago

Hi it’s Rebif I will be starting have the booklets just reading up on it now. I was just wondering why it was so long before they started me on med! Many thanks both of us for letting me know why I appreciate it. X

3 years ago

My neuro told me he wouldn’t start me on meds till I’d had the counselling sessions from the nurses, which turned out to mean an hour one-to-one with the MS nurse then six education sessions held in the evenings at the hospital. I suppose it’s more cost-effective to iron out all the issues en masse as opposed to dealing with endless indivual queries once people have started their treatment. It was the same neuro that had emphasised earlier how crucial it was to go on DMDs, so I guess the need to be fully informed is very significant in clinical terms. xx

3 years ago

Hiya this is Gemma. I got diagnosed last year in April. I didn’t start my medication of tecfidera till November and unfortunately 22nd December I relapsed and still recovering after 5days of strong steroids. Nothing to say that if I hadn’t had my meds that I wouldn’t of relapsed again, I just didn’t expect to hav another one so soon! Just hang on in there but if ur still unsure speak to ur ms nurse for peace of mind. Hope all goes well

3 years ago

Hi Gemma, yea it was just annoying me as in the quicker you get the medication the quicker it can help but like I’ve read it’s not as simple as that! I got diagnosed Sept after 2nd relapse took pin needles hand feet optic neuritis for 2nd time happened late October suppose it’s all part off it! rang MS nurse she told me it was a relapse so 3 Fed I start with Rebif they are getting me down to learn and talk more about it, ifs it’s not one thing it’s another;) how’s your relapse now? Hope not too bad!! Bernie x

3 years ago

I was DX back in 2003 and recovered well from my relapse, albeit being left with chronic back pain (which was caused indirectly by the Ms relapse). Have had a long period with no or very little symptoms and meds are only now being discussed, after having sixth nerve palsy in 2013 and muscle tightness/stiffness after surgery in winter 2014 (still have this at the mo).

It is very interesting to hear the differing treatment across the country. I have been worried the past few years by not being on anything but was told I didn’t qualify. Anyway, haven’t looked into meds yet (might need all your help on that one) but will discuss with my neuro when I see him. The problem being I would like to try for a baby, possibly next year, so might wait until later on.

3 years ago

Hi,, God you would think after everything you have been threw they would start you on some kind treatment? it’s a waiting game isn’t? Rem MS nurse saying that I’ve taken a relapse I rem thinking, I’ve took a what? Lol everyday we learn something new!! I’ve four kids three eldest know bout MS my youngest 10 year old doesn’t if I told him I’d be better putting in the newspaper 😉 is this your 1st baby your planning? Hard work when one hand gripping my back one leg dragging behind me:0) hopefully come 3rd Feb when I get my med these pains and lose off balance will ease! Think? I have to go down learn how to inject learn more bout med before it all starts. Nice chatting to someone who knows what we are going threw!! Bernie Xx

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