Lenore
I was told it was mnd in September last year so went through all the shock etc at that time. Then a month later my neurologist said because I only had lower motor neurone symptoms and an atypical presentation he felt he wanted a second opinion and that there was a small chance for MMN.
The specialist in London did still say he thought it was probably MND but maybe PMA variant or MMN and we could could trial the Ivig. We knew all along it was only a small chance it would work. Only 5% but even with those odds you have to give it a go. I just found the whole process difficult it made me feel really ill and there was no improvement.
I felt in some ways I was putting myself through it more for my family than myself when the first lot didn't work. I didn't want them to feel I was giving up. I felt I had failed them when the second lot was also difficult, and was really having to force myself to put myself through a third time when the new symptoms showed up.
I have to understand things to cope, so I had read up a lot and asked the doctors lots of questions throughout, so I knew roughly where it was heading. The neurologist saw me within a week of me asking and confirmed the upper motor signs and talked through what that meant. I have a sense of sadness that the Ivig didn't work, but relief that we can now move on without me feeling guilty for failing.
The happy pills are great and I have my first hospice visit tomorrow to set up counselling and start building a relationship. They do lots of other things too like massage and relaxation class which I will try. They have also told me that my daughter who bears the main brunt of looking after me can come and be pampered too, which is lovely.
I am sure there will be lots of ups and downs on this road but I have a wonderful support network which makes the whole thing easier for all of us.
Sorry for the essay, in a thoughtful mood today.
Wendy xx
