Hi all, I have finally got on to the forum!!! I couldn't get on to it for ages!! Then I realised it had been updated!

Anyway, I had my pain clinic appt last week to see about a facet joint injection in my spine. The pain consultant examined me and did some neuro tests. His verdict is I have a severe primary neurological disease that is causing myopathy and neuropathy. The damage is permanent. He wants me to be referred to a neurologist to be restested for MS. I already have a diagnosis of Clinical MS, but I thought that had been superseded by the lupus and aps diagnosis. Apparently if it was the lupus attacking the CNS then it would treating very aggressively and it is quite rare.

So, I came out of the appt in tears. I had gone in expecting a magic cure all injection, and came out having been told the damage is permanent, and the pain will continue. I have found this news hard to swallow and am struggling with it all. I have been positve throughout everything during the last 3 years, but this has floored me in a way I didn't anticipate.

So if I am a bit quiet, this is why.

Deb x

Hi Deb,

I`m so, so sorry that you have had such awful news. You must be feeling devastated. I do hope you can get the neurology referral quickly.

I wish I could think of something to say that would help you, but I will keep you in my thoughts and prayers.

Take care,

Kathleen x

Hi Deb
I know what you mean
when I was told about having not just RA but MS too I was gob smacked
have you got MS? if you do and it is ok with you I will e-mail you with my phone number you can then phone and talk
if you want to
please never for-get we all are here for you
take care
Mary L

Welcome back Debbie,

First of all I'd like to give you a big warm cyber hug.

Gosh this is a lot for you to take on board, you've been given one hell of a shock and will need time to adjust. We are here for you so please keep posting.

I hope the pain clinic are helping you to manage the pain. I have used hypnotherapy in the past for pain management and found it helpful.

Take Care,

Love,

Barbara
XXXXXX

Oh Debbie I'm so sorry you were given such awful news.
I hope you don't have to wait long to see the neurologist .

Love and hugs,
Doreen xx

debbie I am so sorry to read this.

you poor girl.

I have a lot of neuro prbs and get lower pelvis/back pain. But for me- it is complex immune disorder attacking all and sundry.

for me, gabapentin has been a God send for the neuro pain.

much love

Jenni x

Take care Debbie, thinking of you too, glad u found your way to the new forum xx
Love and hugs ~ Liz XX

Hi Debbie

What devastating news for you, no wonder you're feeling miserable. I hope you are able to get some help soon. Please keep posting when you can as we'll all be worrying about you.

Anthea x

So sorry to hear your news Debbie. Am thinking of you.

Julie

Dear Deb,

Underfloor heating must be so beautiful, what a lovely feeling! Enjoy! (Our 500 year old flagstones are freezing to touch, honestly just too horrid!LOL)

And flying off to Lanzarote, how lovely....whereabouts are you going?

Much Love,
Amanda