Last reply 6 years ago
where do I go from here

Got secondary prg. 3 children, 1 husband (lol). Diagnosed 3 years ago and sent on my way.Medically feel totally alone. A nice person on here gave me a contact for a MS nurse in Brighton, I left a message but no response 🙁 Having bad fatigue, husband says “you need to go back to GP” I said “why? this is what happens – doesn’t it?” Just feeling fed up …. sorry! 🙂 Ranting x

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6 years ago

Fatigue is a pain the backside isn’t it? There are things they can try for you to ease it. Go see your GP or ring the neurologist you need to let someone know what’s happening. Keep trying the MS nurse too. They are busy but are an excellent resource so don’t give up.

I hope you get some help soon.

6 years ago

OMG! I have spoken to a MS nurse. She said I should have been referred to them 3 yrs ago when I was diagnosed. She is sorting everything out and I will get a home visit. She said write a list of questions I may have wanted to ask over the last 3 yrs!
Was very apologetic and very nice/friendly/supportive. I said I have just been using Shift MS as my support 🙂 Thanks Spid.

6 years ago

Oh Min thats excellent news! I am sure things will become better for you now.. keep positive x

6 years ago

Hello, I have SPMS too!
For the last year I have been having chemotherapy to try and stop the progession. I know it sounds drastic, I was shocked when my neuro suggested it, but I have been having it for a year and so far my progression has stabilised.
I have decided not to have my next chemo session and see what happens, if I start progressing again I might have to go back on it. Try asking your MS nurse when you see her. The chemo drug is called Mitoxantrone.
Best wishes

6 years ago

They stuck me on Mitox as my first line treatment back in 2008, some good shit, I went from 10-112 relapses in the previous 21 months to none for the year I was on it for. Loved the green pee 🙂

6 years ago

I will defo ask about it when I speak to the nurse.
Thanks for your help all of you 🙂

6 years ago

I’m so jealous Gav, they told me I would pee blue for a few days and I didn’t, not even the slightest tinge lol!
Also, I wouldn’t describe it as ‘good shit’ because it was horrible, but maybe I am just a big wuss! 🙂

Definately worth asking about though 🙂

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