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Received MS diagnosis today

I was recently hospitalised with optical neuritis & inflammation on my brain, was treated with iv steriods and have had to wait for neurology appt for mri & lumbar puncture results. The consultant tht cared for me whilst in hospital hinted at ms & the optamologist i recently seen also hinted at ms, which is why i find myself here! I think i may be experiencing a relapse, im not sure, this is all very new to me!! For last week ive been experiencing dizziness, muscle weakness in arms & hands and muscle stiffness in my feet. The last few days ive been very tired, needing a few naps in the day! Ive never experienced anything like this before!! Should i contact my GP tomorrow or just wait it out to Friday when imeet with my Consultant?? Thanks in advance for your advice.

Hi Rachie,

I’m in a similar situation to you, limbo land, I have my MS specialist appt on Wednesday and since my lat appt have developed new symptoms. As I’m so close to my appt I decided to wait till I see the specialist on Wednesday to add to the list. That’s not to say that it would do any harm seeing your gp, if you’re lucky enough to get an appt before seeing your specialist on Friday.

Either way it will be the neuro who makes the diagnosis and will be able to advise better than your gp, not all gp’s are well informed about MS and it’s many complexities.

I hope all goes well for you at your appt.

Lou xx

hi

my own experience is that when i was referred to neurology and had an MRI i was in th middle of a massive relapse and therefore the mri showed an active episode along with many old ones.

therefore i got my diagnosis. #

happy days!

carole x

Thanks ladies. Think I’ll just wait until Friday when with consultant :slight_smile:

Hi Rachie

That’s probably the best option for now. As your GP may not be comfortable prescribing for eg, high dose steroids.

Best of luck for Friday, let us know what happens.

Sue

Met with my neurologist this morning & received my diagnosis, I have MS. Neurologist keen to start treatment so just have to wait to hear from MS nurse. And so my journey begins… :slight_smile:

Hi Rachieg…i feel i can relate to You, although my symptoms are lucky enough to be ‘minor’ at the moment. I was diagnosed out of the blue on Wednesday. It has been a whirlwind of emotions. I recived my letter for my consultation with the ms nurse for the 1st nov. Until then its a waiting game! Nice torelate to someone at the same stage. I feel quite lost to be honest xx

Hi Rachie

I am sorry to hear you we’re definitively diagnosed. Even when you’re expecting that very news, it’s still a punch in the stomach to hear it actually said. And once said, you can’t go back to before when you didn’t have MS.

I hope you hear from the MS nurse soon and can get started on a disease modifying drug (DMD) as soon as possible these are designed to reduce both the number and severity of relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid It’s unlikely that you’ll get a completely free choice of all the drugs available, it will depend on what prescribing centres have been set up (ie which drugs the hospital are allowed to prescribe). It will also be a case of your neurologist deciding how active your MS is, and also their preference. You should still end up with a choice, the old style injectable interferons are always on the table as is Tecfidera, but the more high risk (and therefore better relapse reduction rates) may not be.

Best of luck. Keep us informed as to what you choose, you can always ask us any questions you have and we’ll try to answer them. Obviously, we are also here when you want someone to rant and complain at. Regardless of how much you were expecting the diagnosis. It’s still crap being given the news and it’s something that you’ll have to live with. We never mind if you just want someone who understands to have a rant at.

Sue