GBS / CIDP and related support groups. Salvation in Facebook.

On becoming ill it was very apparent that there wasn’t a great deal out there in terms of support groups for Guillian-Barre and CIDP sufferers. It was useful to actually Google the illness  (now that I knew what I was looking for), but the amount of coverage the illness receive was quite scanty (nervous term there).

Citizens Advice Bureau.

A few days after my meeting with Debbie Jackson and Occupational Health my partner and I booked in to the local drop in centre of Pudsey’s CAB. Again looking for some advice on my options, and who I needed to speak to. I was still unprepared to accept that my illness now meant that I was physically disabled (although my body bore the bruises, cuts and scrapes showing that my mobility issues were now becoming a more dangerous adventure).

Occupational Health and other adventures...

On the advice of Debbie Jackson I booked an appointment to see Occupational Health. Apparently there isn’t anything that can’t be organised from Robin Lane Surgery. I wasn’t sure what to expect from this chap, and sadly after my first (and only) encounter, it wasn’t a great deal.

Meeting with Debbie

It was time for me to make another appointment with Robin Lane Surgery. Prise aside, I never take time off work. If I’m ill, I’m ill, nothing that a Lemsip won’t sort. And if that fails there’s always solphadol! The prospect of taking an extended period of time off to get well never occurred to me, as I was prepared to soldier on.

Centre Parcs – The highs and the lows (and I’m not just talking about the rapids)

The wait between my first appointment with Dr. Azam and the next appointment with Dr. Dunn was agonizing, especially as Dr. Azam had suggested CIDP. Google here I come (never one to follow my own advice)! Having read about the symptoms, progression and treatment online, (it has to be said that Wikipedia’s constant use of the morbidity does nothing to inspire confidence) it seemed fairly clear that the good Doctor might be on to a winner. Some sites and blogs my partner and I read could frankly been written by myself.

Nerve Conduction Study 2 – This time with a specialist

Following my appointment with Dr Azam (see previous post), I made my way over to the neurophysiology department for my second appointment of the day, with yet a fair few more questions buzzing around my head. The internal walkway between the Jubilee and Brotherton wings of the LGI is really quite far! - But fortunately quite level.

Neurology appointment 1

Neurology Out-Patients is in the Jubilee Building of Leeds General Infirmary and is a surprising distance when reduced to baby steps. Still, I was optimistic, that with 2 appointments on one day I was going to finally crack this nut and get some answers. Dutifully, my partner and I set out and extensive timeline of symptoms, falls and aches as mentioned in my previous post (thanks Rach), which I was prepared to recite to both consultants if required. Arriving at the Neurology and Cardiac desk I took a seat and waiting to be seen by Dr. Dunn.