Update on me.

Indy51 said:

Glad to hear that you're finally getting the right treatment, @ally1

At the risk of being a nagger, I know I've mentioned the connection between gluten and ataxia to you on earlier threads - although I know you've had a lot to deal with, but was wondering if you've had a chance to look into trialing a gluten-free diet yet? There are many gluten free people on the board who I know would be happy to answer any questions you might have. There are many internet links about gluten ataxia, e.g. https://glutenintoleranceschool.com/gluten-ataxia/

Hopefully your GP will now give you better treatment going forward.

Click to expand...

Thank you
To be honest I haven't yet looked at eating a gluten free diet. Xx

Diakat said:

Good to have you back @ally1 . Hope you feel improvement from the op and the other things line up soon.

Click to expand...

Thank you.
I just wish that my arms and legs would be so much better. Even with a walker, now I am scared to go far because my legs just go.

Bluetit1802 said:

I completely missed this thread when you first posted it.
What a star you are, and an inspiration to us all. You have beaten your GP into submission and made him feel guilty for ignoring you all those years.

The District Nurses usually come out to do blood tests. They have to if you are virtually housebound, and there are many folks in care homes and such like that they visit to take bloods and give other treatments. I had one call on me every 3 weeks when I was on chemo to take bloods and give me a specific injection, and I wasn't housebound, it was simply to keep me away from the surgery because of the risk of infection. Do contact them.

Click to expand...

Thank you for the info.
I need to call them as I have an appt on the 14th June for the diabetic nurse. Though have not been given a date to have the HbA1c blood test. That in its self will be a problem again because of getting there. I realise I need to call the surgery about the blood test. Will be a feat in its self to try and get a nurse out to do the blood test.
At the moment, my voice isn't, very loud yet after having the biopsies done

pavlosn said:

Hi ally1

Nice to have news from you and well done on making headway against the system.

Keep up the good fight!

Pavlos

Click to expand...

Thank you

Diakat said:

Is there anyone around who could give you a lift or walk with you to the appointment?

Click to expand...

No one that can drive me there. Its, a good thirty minute walk for me with a walker and that's on a good day

A very big rant here.
The last couple of weeks I had thought I had finally got somewhere with my gp and surgery.
I was due for my HbA1c and to follow up with seeing the diabetic nurse but had to cancel due to the distance to walk there and also because my voice is still a whisper so in my opinion, I had every right to cancel these twice.
I just had a call from the surgery and said I am unable to get there for awhile. My god the lady who, s job it is to make the long term illnesses just wouldn't except my explanation. She even refused me to have the district nurse come at least to do the blood test. She then went on to say the two diabetic nurses have left the surgery. She said the health care assistants will be doing the reviews. I disagree with that.
I spoke to the practice manager and even she wouldn't budge.
I am sure nursery school kids wouldn't act like those.