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Newbie needing help!

Hello This is my first post and I’m really just after a bit of advice from someone who’s been through this. I’ll give you my background, so I’m sorry for the lengthy post! I’ve just (this morning) been formally diagnosed with MS, although I’ve suspected it for a while. It started in August last year with double vision and a rapid deterioration in eyesight. At the time I assumed it was just an eyesight issue, so after two new glasses prescriptions in August and October, I was referred to an eye doctor for investigation. That consultation basically went nowhere as my eyes got better very quickly, resulting in a near-normal new prescription in January. However, I was then referred by my GP to a neurologist as I was experiencing strange numb patches on my legs, feet and stomach. At my first consultation I was told it was highly unlikely that I had MS! In February, however, I ended up in A&E when I woke one morning with very laboured and slurred speech and severe double vision. In the end I was sent home and told to go back to my neurologist, who managed to organise an MRI for the same day. The MRI showed definite lesions and the neurologist warned me that he was now more concerned about MS, although I still didn’t fully meet the criteria for diagnosis. I was told my symptoms should get better in time and to come back in a few weeks. My symptoms did get better within about two weeks, although still faded in and out, particularly when I was tired. However I then started suffering with leg stiffness and pain instead. It wasn’t until maybe a month had passed that I felt 100% ‘normal’ with my eyes and speech. My legs are still on and off. Today I had my follow up consultation and was told that he had reviewed my MRI again with enhancement and based on this, along with my clinical history, he was satisfied that it is MS. We’ve discussed drug treatments and he’s left it to me to make a decision once I’ve spoken to family etc. My first concern is my four and two year old boys…I NEED to be well through as much of their childhood as possible but without too much risk. One of the drugs mentioned seemed to be too high a risk (death in 1/500 cases?) but also had the highest success in relation to long term benefits. The other drugs seemed to be more focused on short term reduction in relapses. Or have I misunderstood? Can anyone give me some opinions from personal experience of the drugs? I really am at a loss at the moment and wonder if a ‘wait and see’ approach is the best option? Also, does anyone know whether the DVLA has to be informed now when my symptoms are so mild? My driving hasn’t been affected and for the few bad days of vision problems I just didn’t drive as a precaution. My stronger glasses made it much better, but I’m now back to my old ones anyway. If the DVLA are informed I guess it follows that the insurance company needs to know as well - will they put my premiums up? Sorry for the essay, I hope someone made it this far!!! TIA.

Hi and welcome, yes by law you have to inform DVLA and they will either write to your gp or consultant. It usually means you are given a three year license, I am on my second 3 yr license and touch wood have had no problems renewing it but luckily my ms has never affected my eyes. On the drugs question I am on Avonex which is disease modifying drug which I inject once a week which should help to prevent relapses. At the end of the day you are best discussing all the different drugs that you may be offered with an ms nurse, mine is brilliant. Good luck and take care Karen x

Ps your ins premium shouldn’t go up

Like karenwolff50 says: you MUST tell the DVLA by law. This triggers a process involving some form filling, that can end up with a 3-year licence. But do make a note of these points:

  • They may ask you to return your old licence, before the decision. Ignore this. They say that the letter they send will function as a licence, but this is only good in the UK (Imagine trying to explain your lack of a proper licence to a French Gendarme).
  • The process can take several months, so as long as you you have your old licence you have something to show. - You should put in your letter that your Insurance Co. have been informed.
  • The people in Swansea go by the book - their book! I was without a licence for over a month (some people have waited longer) while they made their decision. Because of my age (70+) I should only have a 2-year licence, but their book says that people with MS get a three year licence - so that is what they gave me. They also took away my ability to legally drive a light commercial vehicle (by their book, again) but left me with a licence to drive a Main Battle Tank. So, once you apply, you have to wait on their internal processes.

You must notify your insurance company of any significant change that may affect your policy (that could include your diagnosis, or just fitting snow tyres in the winter). A letter saying that you have a Dx of MS, but the neurologist says you are quite safe to drive is sufficient. You may not even get an acknowledgement, but as long as you have a copy on file, that’s OK. Put in the letter that the DVLA have been informed.

I wish I had taken up the option of a DMD when it was first offered. Because of the way the qualification for DMDs works, I had a six-month period to make up my mind. I had three relapses in that period (and only two in the nine months since I started on a DMD).
So, yes, talk to your MS Nurse .
Also, go to the MS Decisions website (google MS Decisions) and read it thoroughly to figure out which one is best for you (my personal choice may not be the right one for you).

Geoff

Thank you both for your replies! I’ll look forward (!) to dealing with all the DVLA paperwork and insurance stuff then!! Up to this point my investigations have been covered by my husband’s insurance so I’ve been under a private consultant, but I’m now going back on the NHS as the insurance won’t cover treatment. I guess I’ll be allocated a nurse at some point then? The consultant did say there was no need to make an immediate decision on drugs but to do some research first. I’ve had two relapses in six months, but he’s suggested this should eventually average one or two per year normally - although I guess everyone is different! It’s so frustrating not knowing what the future holds.

Hiya and welcome aboard.

You can print off the dvla forms from the net and there is very little to it.I recently renewed my insurance on line and again it was a tick box to say dvla informed of condition.They cant put your premiums up because of it so if they did try then you should challenge it.

The ms decisions site is excellent I strongly recommend it, but as far as starting treatment goes be prepared for a wait, as I was told Feb that I qualified but to date have heard nothing and the ms nurse hasnt been allocated yet either.

All the best on your new journey.

Pip

Thank you Pip! I’ve just filled in the DVLA forms so I just need to tell my insurance company now! I really hope the wait isn’t too long for the nurse and start of treatment - I’m naturally a very impatient person! The whole diagnostic process was a nightmare, even though in reality it was very quick compared to some people. Thanks again! Emma