I promised to let you know more and this is what I've found out today.

I saw the consultant today and we discussed how we would go forward. I've been given a bit of a respite as investigations are still ongoing. They have to look into 3 things, in this order: genetics, paraprotein and inflammatory.

What this means is that I will have an appointment with a geneticist who has a special interest in demyelinating neuropathies. She will start by ruling out genes that could provide an answer as to what treatment, if any, is pursued. Initially, she will look at the PMP22 gene. If this is ruled out, she has many more to exhaust. In the worst case, this investigation could take 5 months or more.

At the time I see the geneticist, I will also have a blood test to see if I have an abundance of paraproteins present. If it is positive, that suggests a different form of treatment. If it is negative and the genetics are negative, we will then look at inflammatory issues.

My consultant wanted me to focus on the first two for now. If we have to cross the bridge of inflammatory issues, we will but he is hopeful one of the first two will tell us what we need to know. If we go there, we will start with Prednisone and IVIg therapy (immunoglobulin therapy). I see him again in 4 months (June 19).

So, we are where we are and we know very little more than before. I am researching as much as I can and, as I find out more, I'll keep everyone informed.

Please don't be shy! If you have any information you think might be helpful, please do let me know... the internet is a huge beast and I may not find what you are looking at.

Thanks everyone!