Newly SPG7 diagnosed

[Pineapple12]

I have (finally!!) Diagnosed with SPG7. Trying to understand what it means, to expect. I have looked online but just can't find out what it's like to live day to day. It might seem weird i want to know but need to understand where i go from here as not seeing consultant till February. Thank you in advance

[peterallison]

I was diagnosed with the same, and yes, I wanted to know more, but have in the end, have just decided to go with the flow, and take each week as it comes. I only see a neurologist twice a year, never see my GP unless something is up, have gone on the council housing list for a ground floor flat/bungalow (which here in Harrogate could take years). I have a very understanding g/f, who is chauffeuring me, and doing what she can (she had a hip replacement a couple of years ago) so we are both mobility limited.

Its very frustrating at times, especially living on your own (I just see her a couple of times a week) but hopefully thats going to change in Feb.

As for applying for PIP and the DWP work capability assessments.... don't get me started, I have been turned down twice for PIP and zero points for the other, and THAT is the major downside to SPG7, as nobody seems to understand it, You can bombard all the officials with the well written Ataxia brochure, and other things, but it does no good, ( my own opinion) at the end of the day

[Pineapple12 in reply to peterallison]

Thank you peterallison for the response. Feel a bit' lost at sea' i know it is not nice for you but it is good to know someone understands. This is all new to me

[peterallison in reply to Pineapple12]

This web site is a nice place to meet like minded people, that give you advice, sympathy if needed, allow you to vent your anger at certain situations and know what you are going through, as they have gone, or are going through it