Hi I’m Nickie and I’m 54 year old and was diagnosed with PPMS about 16 months ago. My condition has worsened over the last 3 months and I’m, scared, tearful and feel alone. I’ve phoned MS nurses on a few occasions but they have been no help, I just want to talk, rant, share my experiences with someone who understands and I will listen to them. I’m not normally an emotional person, but I fear the future and worry about the extra pressure I will bring on my husband and grown up daughters. I can’t get through to the GP for an appointment for my symptoms and this is frustrating. So many odd symptoms but may not all be MS!! Any advice would be gratefully received.
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Hi Nickie.
Welcome aboard. I suppose you could consider joining it a ship of fools (!) a life raft or the RNLI, depending on your frame of mind. Whatever, stick around. The forum is a mine of information as well as a great place to let off steam, vent your anger and frustration, or just be silly and tease each other. I always feel it’s like a good café or pub, whichever is your preference. Pull up a chair and take off your jacket!
Whatever, everyone here has a wealth of experience and knowledge about this damned condition. No topic is considered Taboo and you will never need to feel embarrassed to ask or share something here. Virtual friendships have developed from this forum. Anyway, sorry, I tend to ramble…
Everything you feel is perfectly normal.
You’ve been told you have a condition that you probably know nothing about. Trying to find out more about it and learn what you can. Google can be terrifying, as can the night, in the darkness, when your thoughts run amok in bed.
With ppms there are many disease modifying drugs available today, which reduce the frequency of relapses and shortens the length of them. Usually the next step after the diagnosis from your neurologist, is to be given several booklets explaining these options. You are expected to make the choice of which you want to take. Perhaps you could contact the nurses again and be assertive. Be clear and concise about what it is you require. Take a name. Arrange a time for another call or appointment. Don’t be fobbed off.
Let us know how you get on.
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Hi Nickie,
If you take a look at the MS Society website they have links to find local contacts and groups.
https://www.mssociety.org.uk/care-and-support/local-support
All the best
Mick
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Welcome to the club no-one wants to be a member of. I have PPMS we are the 
the cool club/group. My normal posts are positive and up beat BUT today I am ‘pissed off’. Wondering if I will get away with that one?
Some days are better than others grab the good days with 2 hands. Other annoying platitudes, not everything is MS, if you are depressed get some help.
I’m not going to much more use to you today.
Take care and be safe 
M xx
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Hi
Having a better day today, as I said ‘grab the good days with 2 hands’.
Take care, M
Hi Nickie
I feel exactly the same at the moment. I seem to be so alone, everyone else is moving along with their lives and I’m frozen in time.
Glad I’ve found this forum it seems to be very helpful.
Thank you so much, after writing what I did I appreciated greatly all the replies but somehow haven’t felt like I was able to respond and didn’t want to talk about MS for a bit as I was just fed up with it. I want to thank people for their kindness, welcome & suggestions and must apologise for not responding until now. Fatigue & apathy seem to be winning at the moment for me.
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Thank you so much, after writing what I did I appreciated greatly all the replies but somehow haven’t felt like I was able to respond and didn’t want to talk about MS for a bit as I was just fed up with it. I want to thank people for their kindness, welcome & suggestions and must apologise for not responding until now. Fatigue & apathy seem to be winning at the moment for me.
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No apology necessary Nickie. Hope you feel a bit better soon.
Mick
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