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Newly diagnosed

Hi , i have been diagnosed with ms and awaiting to see what type i have as have leisions on brain , cervical and thoracic spine and just wondered if anyone else wakes up sometimes with the feeling as if drunk ? And feels that way allday ? Would appreciate anyones replys. Thanks guys

Hi Kellyb Yes I know that feeling well, usually if I fall asleep in front of TV and wake up completley disorientated amd drunk like. I am recently diagnosed and due to start Copaxone in a few weeks just awaiting a delivery day. I have lesions on spine and brain and have been diagnosed with early relapsing remitting. Scary times but slowly coming to terms with it. Mel

Hi Mel , Thanks for reply . What medication are you taking ? Yeah its scary and sick of feeling crap everyday just want to know exact one it is and get things moving x

Hello Kelly

In terms of the diagnosis, most people tend to be diagnosed initially with relapsing remitting MS for several reasons. The first is that approximately 85% of people start out with RR in the early stages and not everyone moves on to becoming progressive (ie SP) later. Some people are in fact diagnosed with RR, live with that for years, then have their diagnosis altered to secondary progressive, only to later have that changed back to RR (or more likely, progressive relapsing). Few people are diagnosed from the outset as being primary progressive.

The second reason most are diagnosed RR in the early days (unless there is clear evidence of progressive disease) is that the only disease modifying drugs (DMDs) available are only prescribed to people who are RR. It’s completely unfair, but the neurologists are bound to follow the rules laid down by NICE (the nasty people from the National Institute for Clinical Excellence who are concerned with cost effectiveness).

The ‘types’ of MS are becoming a bit blurry these days as people don’t always fit into clear cut categories. Some people with PPMS still have mini relapses. Some people with RRMS have significant disability progression even though their disease pattern remains that of relapsing remitting. And some have RRMS even though their relapses are years apart, and their remission is often only partial.

It’s a bit of a bugger really, identifying the type of MS you have. But if you’ve so far had at least one clear relapse with either full or partial remission, I’d expect you to be diagnosed with RRMS.

If that’s the case, the next question will be which disease modifying drug you will qualify for. This will depend on how ‘active’ your MS is. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid At least when you have the discussion with your neurologist or MS nurse, you’ll be familiar with the names of the drugs.

In terms of feeling drunk, you could have Vertigo. Have a look at https://www.mstrust.org.uk/a-z/dizziness-vertigo

Best of luck.

Sue

Hi Kelly

I am taking gabapentin, topped up with paracetamol if I need it. Due to start Copaxone DMT in a few weeks. Just received my confirmation letter today - my “diagnosis is secure” RRMS. Want to start my DMT now and waste no more time but I will have to wait!

take care

Mel

Hi mel , Thanks for your reply . Once i knpw which ms i have can start treatment and this will b the 7th may . I am relieved there is someone else who understands that feeling Kel x

Morning Kelly

Newly diagnosed together - it makes sure a difference to me knowing there are others in the ‘newly diagnosed’ boat. When I started out with all this about 12 months I thought I was on my own but this forum has been a lifeline. I have made some great connections with others in a similar position. Although still a waiting game for the drugs to start, I feel relief that limboland is over.

keep in touch and let us know how you get on

Mel x

Hi mel , Thanks for your messages . I have had all tests done now and in a strange way am relieved i have answers even though its pretty scarey all the information and outcomes Kel x

I know its a strange feeling being relieving at receiving such a diagnosis, but limboland is just horrid and at least things can now move forward.

I am lucky being under the care of such a fab hosp and MS team at Salford.

Its information overload for me just now, although I have chosen my treatment and am itching to get started, hopefully things will start to settle down once treatment starts.

Mel x

I am finding the mobility scooter horrid as my mobility is bad and i suffer with fibromialgia also and needing to help myself with a scooter i am finding my anxiety is hard coping with going out on it . Xx