Hi all Have been to see the neurologist today. It seems I do have MS! What do I do now? I see a specialist soon so that they can determine which type I have. I feel so angry and upset. I don’t know where to turn. Julie
hi julze
i can’t remember your back story - sorry.
however i can imagine how you are feeling.
the diagnosis procedure drags on but at least you now have answers.
the appointment with a specialist will give you more.
anyway you should already have been allocated an ms nurse, has your neuro mentioned this?
you should be offered a DMD at your appointment.
anger is natural.
you can always turn to us on here.
hang on in there babe
carole x
Thank you Carole I am to chase up my appointment at Queen Elizabeth hospital. My neurologist has referred me there because they are MS specialists. The neurologist offered me steroids yesterday but I declined. Julie x
Wondering why you declined? Was their purpose not explained to your?
Hi Julie,
Sorry to hear about your diagnosis. My own was confirmed in June - although it had been strongly suspected from March when numb toes lead to an MRI which showed multiple lesions everywhere.
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Fair enough to feel angry and upset - I know I did (and still do). Don’t beat yourself up though. Give yourself time to get your head into this new game by what ever means works best for you. I chose tears, wine, cake, wine, long walks and boxing.
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I also took time to find out as much as I could about the disease (from reputable sites like this, Shift, MS Trust and Barts blog - I tried to dodge the scarier/crazier sites and blogs) and how it could be managed. I wanted to make sure that I got the most out of each of my neuro appointments, so wanted to familiarise myself with on/off label treatments, drugs in the pipeline, life style choice and impact issues so I could understand what my neuro was explaining and I was ready with my list of questions. I am, however, a control freak so this approach may not work for everyone…
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First priority has to be dealing with any on-going symptoms. I took steroids for my numb toes and they cleared up quickly. Have they offered you any suggestions on how to deal with yours if you don’t want steroids?
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I’d suggest taking time now to read up on DMDs in case you are diagnosed with RRMS (something like 85% pwMS are). The MS Trust decisions tool is useful - but there’s lots to take on board - including efficacy, how the drug is administered, side effects and your thoughts on starting a family. I decided pretty quickly that I wanted Lemtrada as my first line DMD - and so it was helpful to be able to focus my neuro and MS nurse meetings on my specific questions in relation to this drug from the get-go (I’m nearly 8 weeks post Round 1 - and feeling positive and optimistic. Happy to chat through my experience on this drug if it is something you want to consider)
As for where to turn, in the first instance this is as good a place as any. I didn’t tell anyone other than my boyfriend for a good few months after my initial MRI. He was wonderful - but I was very conscious of how much MS stuff I was needing to down load on him every evening - especially as he didn’t have anyone he could turn to with any concerns of his own. Being able to vent on the board was a real lifeline - and stopped the diagnosis process feeling quite so lonely.
Im still working through this whole “diagnosed with MS” thing myself, but am very grateful for the support I’ve received from others off of the forums and strongly believe in “play it forward” so please do feel free to PM me.
K xx
I don’t likea the sound of the side effects. xx
Hi. I have also been recently diagonosed except I don’t feel angry or upset. I feel positive about it all, I may have MS but I’m gonna tackle it head on!! I have a good prognosis and I’m not going to get it stop me from doing anything. I have had my dmt appointment today and will start them in 4-6 weeks, I’ve gone for copaxone because it’s only very mild at the moment. If there is such a thing. I did go in my appointment bouncing which apparently is a rare thing :-). What I’m trying to say it’s not the end of the world, I’m probably more fitter than I have been for a long time :-). Xx