diagnosis

What a kind of relief for you to finally have a firm diagnosis.
I am sad for you that it has such an impact on your life and I hope you get all the help you need.

22 years of not knowing what it was!

Hi boodymum67 Glad you have got a diagnosis at long last. I, too, have a rare disease but mine took only 10 or 11 years to get a diagnosis.

I was searching online for information, as you do, and suddenly came across a closed Facebook group for people all over the world who are suffering the same and it has been a Godsend. "Birds of a feather flock together" and all that

The members feel like a family network of support and I have learnt such a lot. I never knew these groups existed until I discovered my one.

Just telling you this in case you felt the need to talk to someone who would understand and share your problems, if you can find a group.

Good luck in the future.

boodymum67 its a relief in a way to have a diagnosis and know what you are dealing with isn't it. I am so glad you are in the care of a specialist centre and I hope you have a good Christmas. xx

We have a friend in the Netherlands who has spinal MS. It also took a while to get the diagnosis but it does seem to be progressing slowly. I wish you well.

It must be a huge relief to know at last, boodymum but my first reaction is to think how brave you are, and thank God for my own relative health. Which I often moan about.
Strangely, I've been reading a series in an american magazine written by a youngish woman who has the same problem. Hers came on quite suddenly but after diagnosis and good treatment she's improving.