Hi and low

Hi all …

March last year I woke on a Friday morning with reduced feeling in my left foot and although a little concerning I got on with my day and carried on as usual. Saturday morning however I could not lift my foot from the floor and phoned my father in law to take me to hospital. Once in hospital I had 4 days of no one knowing what was wrong and no support from the doctors and was discharged. My husband took me to our GP the same day and whilst leaving the surgery I fell and broke my wrist. I went back to hospital for another 6 days as I was now totally immobile. This time tests were done Bloods, CT and MRI scans of my spine and leg were taken and I was discharged into the care of my husband and the Rehab team having been told I had damaged a nerve in my spine. This didn’t seem right to me so I was also referred to a Neuro Mr C Sherrington who had an MRI scan of my brain organised and also a LP on Nov 18th 2011 I was finally dx with MS. The relief I felt when I was dx was unbelievable but just the start of things. Today has been the worst day so far nothing to do with the tremors, spasticity, fatigue or general leg weakness but purely feeling like a second class citizen. Forms have been sent to CI Insurance DLA and I have been put on the emergency list for social services OH. This was all done in Nov and early Dec. My Neuro got straight onto social services and answered all the questions from CI Insurance. On Dec 22nd I received a letter from the Insurance company telling me they required more info from my GP. My GP received the letter on the 23rd Dec and when I rang my GP today I was told that they hadn’t looked at the letter yet 3 weeks on I was livid to be told that this was normal and that the letter took second priority. I also rang Social Services only to be told that I was at the back of a very long list even though I can’t get upstairs unaided and I can’t get into the shower I might have to wait upto 12 months. It was suggested that it might be better to sell the house we’ve been paying a mortgage on for 16 years. I could not believe what i was hearing. To cap it all I turned up to physio today and my physio was off on sick (not her fault) but there was no one there to see me. Why did they not phone…. I despair I really do

Sorry for the rant

Janette M

Sorry forgot to mention the Neoru also found i had Gaze Evoked Bilateral Nystagmus which no one spotted during my first 2 hospital vists. Thank God someone knew what they were looking for,

What a day!

Waiting for 12 months to get OT support is shameful. I’m sure there are rules about who gets prioritised. If you’re already on the emergency list and you can’t get up the stairs or in the shower, who is in front of you in the queue!!! Have you thought of contacting your MP? It’s amazing how a little political persuasion can make people find spaces in their diary sometimes…

I have heard the “you should sell the house” thing before. Completely heartless and a rather easy way out for the council

You should probably post this on the Everyday Living forum - some people on there will have much more experience with dealing with this sort of stuff than I have and might be able to give you some good tips to get things moving.

Btw, have you checked the small print of the policy - there may be something in there about how long they aim to take to pay out, in which case, you may have something to hold over them?

I hope tomorrow is a better day!

Karen x

hi janette,

just wanted to say welcome and hope things get sorted out for you really soon. its hard enough to deal with without the added complications that you have experienced.

this place is great for support and sometimes its nice just to have a good old moan!

please let us know how you get on.

best wishes

mandy xxxxxx