Hey Will,

I'm sorry to hear that you've had these terrible symptoms, minimal help from the NHS and with no real answers. These are awful things to happen to a young man. You've had it rough, and I feel for you.

The NHS have treated you shabbily.

I see your EMG was done over a year ago. Surely a second test is indicated to check progress given the nature of your symptoms.

I am not a doctor, or someone capable of diagnosis, but you have invited speculation about your life changing symptoms. I feel it is in your interest that I do so, though many may feel that I should not.

I wonder if you have some kind of Large Fibre Neuropathy. Possibly Demyelinating Polyneuropathy or Polyradiculoneuropathy. This is also known as CIDP. Some of your symptoms certainly fit. I will let you do your own research.

I urge you to do the following

1. Get another EMG. This is to rule out Large Fibre changes since your last test.

2. This is the most important. The diagnostic tool I think you require is a Lumbar Puncture and the associated blood tests. This will give your Neurologist a much better picture of your condition and a potential treatment plan. I can't believe you have not been offered this.


Best wishes,

Atty