Recently Diagnosed

Hi,

I was diagnosed with MS yesterday (07/04/2016). I was told about 2 years ago this was a possibility and that i would get another MRI scan for them to compare the two and then possibly a lumbar puncture done (i didn’t need the lumbar puncture) this was confirmed with the MRI scans. .At the appointment with the Neurologist he said that i would be referred to a MS nurse and would be put on a tablet, also to return back every 3 months for blood tests. At the time i didn’t know how to feel or what to think about it and I still don’t. How long will it be before i hear from anyone about it? I was told to tell the DVLA and Insurance. i am currently getting a form to fill out and send away but will it just restrict it to a 3 year licence? I really just want to hear from people that have been where i am.

Any answers would be appreciated

Hi amb,

Welcome; not a club you want to join but health is something you have no choice over; not MS anyway.

Your diagnosis seems textbook; good you did not need an LP. As far as your MRI is concerned purchase a copy; costs about £10. May sound a little morbid but very often they lose theirs so you will always have a copy for comparison purposes?

I should imagine the pill you have been given is Carbamazepine; see Carbamazepine - multiple sclerosis encyclopaedia

If you have a mortgage see if you have ‘critical illness’ insurance

Good luck

George

They had my MRI results on a computer though so I can’t imagine them getting lost I have not been given a pill yet waiting for all this to happen and to be honest I don’t know how long it will take or what to think about everything. The pill that got recommended for me was Tecfidera.

hi amb

tecfidera is a good drug to be on.

initially i had some side effects but they settled down quickly.

beats injecting myself.

carole x

does anyone know how long it will take to be put on this and referred to an MS nurse. Is there any questions that i should ask i dont know

I have had my appointment through to see the MS specialist but no diagnosis. The neurologist says it is but it needs to come from them. I have 2 or 3 lesions on my spine and some small lesions on my brain, how long do diagnosis’s take? X

I’m not sure. I was told a year ago it might be a possibility but would get another MRI scan to compare the two And I was told the other day that it was MS. So mine took a year for diagnosis.

I could have written this post myself !! I was diagnosed earlier on this week, I have sent forms off to dvla and also waiting for a referal to ms nurse re starting tecfidera.

I had my first bout of optic neuritis June 2015 which lasted 4 weeks then sight returned to 100%, i had an mri & vep and a few small lesions were found.

second bout of optic neuritis was December 2015, although my sight has returned, colours are very washed out, the neurologist said that this will probably remain like this, i had a second mri back in february which showed a few further lesions leading me to be diagnosed this week.

I wasn’t told whether i had lesions on my spinal cord, but i was told there wasn’ t many more lesions between the second and first scan- which apparently is a good thing??

my neurologist doesnt want to see me for another year - so im assuming the ms nurses will take over from here .

What forms did you need to get to send to dvla. Did you get them from somewhere or print them?

You can get the form from the dvla website. Quite easy to find, there’s a drop down list of conditions and relevant forms to print off. I’ve just been through the same thing.

It’s a cn1 form u can print off. Prior to that I had to inform dvla of optic neuritis and had to go to a specsavers they chose for another eye test (paid for by dvla)

hello;

i have also just gone through this, after being diagnosed 3 weeks away (first symotoms Sept 2015)

my ms nurse appointment is end of april and ms specialist start of may, so an approx 7 week wait from diagnosis to nurse…i phoned up and chased both however (used the excuse that i needed to confirm it in the diary for work to avoid having to cancell if i was away etc etc!)- NOTHING happens quickly on the NHS, which is maddening!

The DVLA forms are on the website, pretty easy to fill in, i also sent a copy of my diagnosis letter to my boss at work and the hr lady just to make sure it was on record. Neither company car insurers or own insurers were that bothered…havent herd back from DVLA yet! i printed them off of the website and posted.

Do I have to print the CN1 Form or can I get it from a post office.

I contacted the DVLA by phone and they sent the forms out to me to fill in and send back.

has anyone had any word back from the DVLA?

Also i got my yearly appointment with my Neurologist through during the week for 2017 but nothing yet about MS Nurse

I got a reply from them yesterday - they’re going to contact the neurologist and write to me again when he’s got back to them. All takes time huh.

when did you send your form away to them?

yeah will take time. My neurologist said to me that they will restrict it to a 3 year licence i don’t know if this is the case for everyone just depends how bad it is. But to be honest i dont know much about it i don’t feel any different at all just tired a lot but nothing that would affect my driving. pretty annoying that now will probably get a 3 year licence when i only passed my driving test just under a year ago

It’s a few weeks now since I sent the form off. They did send it back because I hadn’t answered one of the questions about medication…this was actually because at the time I wasn’t on any! However…i filled in that I wasn’t on any and sent it back…then they wrote to say they would be contacting the neurologist. Really not sure of timescales but I barely know what day of the week it is at the moment :wink:

this happened to me aswell!

Are you on any medication- no

please fill out all medication you are on (didnt fill in anything)…sent back to me because of this! twats!!!