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Fed up in Limbo-frustrated

Hi everyone out there, hope your day is going OK!

I need to have a rant.  I have been in limbo for 3.5 yrs diagnosed with Probable PPMS. I used to run and was very fit and now can not walk very far as I have footdrop.

My GP left the practice and now you never know who you will see. We are told we are not entitled to a family GP only a group practice.  I have just returned from the doc because I have been feeling unwell and have had shingles.  Whilst I was there I asked him to refer me to an Orthotist (at the recommendation of my physio), who has been brilliant but has gone as far as she can with me so I dont see her anymore.  He agreed but asked me why? I told him I have probable MS and that seemed to be  a complete surprise to him (I know the Neuro has recently written to him).  He then said appts are 10 mins and people would be waiting!  I said I was aware of that and I had only been 10 mins.

Before this I was never ill and it makes me so mad that now my mobility is deteriorating and I feel in need of help, I am not getting it.

Thanks for listening.

Amy

I honestly don't know how long-term limbolanders cope - I think you're all amazing! (Even when you rant :-) After all, who wouldn't?!)

It's simply wrong that you aren't getting the support you need. I'm sorry that I can't offer any real advice, but I bet there are people on EL who might be able to suggest ways to get things moving. Why not try a post on there?

(((((hugs)))))

Karen x

 

Hi Amy

I can really empathise with you. I've been in Limbo for 5 years now and my main problem is walking - or rather the inability to do it for long.

Since a flare-up last October I have a numb and weak left ankle, foot & toes, and also foot-drop. My Neuro refused to see me ('though I do have a previously arranged appointment coming up this week, at last), and my GP is just like yours.

When I see him, he walks to the door after my 10mins is up! 

Help is just not forthcoming in Limbo is it? I also haven't had a bath for months as I can't get out of it. I don't have a shower, so resort to pouring a jug of water over me and having a full wash that way. I asked for an OT assessment at the beginning of December, but heard nothing yet.

It feels like we're just left to get on with it, doesn't it?

Sharing your frustration, but do hope you get some help with your footdrop soon and also the other problems.

Keep your chin up - we're all in this Limbo together and can support each other.

Bren x