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How long after being diagnosed do you start your dmds

Hi all just wondering how long it took you all to start on your dmds.

I was diagnosed nearly 3 weeks ago and have yet to hear back from the RVI hospital, i rang the ms nurse hotline yesterday and a lady said a letter hadnt even been written yet even though she could see the information on the computer.

I was just wondering how long it took you to get your letters of conformation of ms and start your dmds .

Im poping 300mg of Gabapentin 12 times a day at the moment which have been administered by my MO and they seem to be calming the situation down a bit which is good .

So any ideas on timelength before dmds would be great .

Kind Regards Iain .

Hi Iain, I was diagnosed privately on 2nd of September and I STILL do not have an appointment to see the same neurologist on the NHS. Apparently the letter is ‘just on his desk’ for two weeks now. I am very frustrated. I hope you have a better outcome. Emily

Hi Emily.

It does seem crazy that even after being diagnosed with ms it seems to take an age to follow up with help ,it might just be me and i might be talking rubbish and being impatient as im new and have no idea what is supposed to happen next .

Im in the army so they love a paper trail and will be putting me through a medical discharge board which will take a year as its in 4 parts , the first part next month in front of occupational health so i need concrete proof of my ms not just a booklet of the drug im going to be offered and an ms nurse hotline card.

Emily sorry for being nosey , which ms did you get diagnosed with and i hope your managing while you wait .

Kind Regards Iain .

Hi Iain,

I hope you get your appointment soon!

The neuro said RRMS. I have no symptoms at all now, except fatigue. I only had 3-4 episodes in the last year and a half (2-3 episodes of leg numbness up to my torso, which lasted about 2 weeks and resolved on its own and then one episode of optic neuritis which lasted 2-3 weeks to clear up without steriods).

I am generally OK, except the fatigue. I know from reading your previous posts that you are struggling much more, if I remember correctly? which drugs did your neuro suggest you should go on?

All the best !

Emily

Hi I was diagnosed on 26 September, saw the MS nurse earlier this week and will start Tecfidera in about a month. All the paperwork has been submitted but apparently the wheels turn slowly from here! x

Hi Emily.

I was told im in between RRMS and and SPMS he said when he sees me again and if there is no improvement then it will be the latter .

Im walking like im drunk and have been for 4 months my legs just dont work properly anymore i get leg spasms quite badly and as for the fatigue WOW i hoover the downstairs of my house and using a military term im blowing out of my ass no energy at all and ready to keel over and this has all happened in about 6 months ,before that i was running 10 miles every day and had completed in the great north run the last 4 years , i couldnt run a bath now lol .

Im not upset or angry with my ms ive come to terms with it now quite quickly , i just get frustrated im not able to do what i used to do, i want to do it and try to do it but my body just cant anymore.

The military are very scared with ms as there have been numerous reports that life style ie stress through tours of duty and the pills they gave us and other stuff causes the ms . We have a medical every year and it hasnt been spotted by anyone even though ive told the docs about certain symptoms , you get told man up soldier on lol and today this is where i am .

Regards Iain

Yep Tecfidera has been offered to me too.

Regards Iain

what happened to me in 2008 is that although my neuro had told me that my mri showed lesions and i had ms he needed to refer me to a specialist neuro, which he did.

the appointments came through fairly quickly.

the specialist offered me a choice of rebif or copaxone and i chose copaxone.

then it had to go to the CCG (clinical commissioning group) once that had been approved i still had to wait 6 weeks before i received my first batch of needles.

on the whole, i didn’t feel like i was waiting around that much.

just all these different departments have their own speed (which is slow).

your GP should have received a letter from your neuro telling of your diagnosis so maybe this should be enough for your occupational health meeting.

carole x

Hi. I was dx early December 2013 and started a DMD at the end of March 2014. Diagnosis was fairly quick (within the year) but just a little wait after xx