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).

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.

Zip-gate and other inventions...

Since becoming ill I have decided I have probably missed my vocation as a budding inventor. Reduced grip, dexterity and strength comes with its setbacks, these include but are not limited to being unable to operate any anti-perspirant spray cans (easy, use a roll on), using keys with a small head (extremely difficult to hold and twist), pulling up your socks, tightening your belt, holding glasses or trays and most importantly undoing your fly (especially a zipper on suit trousers). This latter problem presented me with some difficulties one afternoon while in work. As the office is generally boiling (I blame the girls) my symptoms were made worse, and on this day I was faced with a dilemma. How do you operate a small suit fly zipper if you can barely manage to move your hands? Things were getting desperate. Right, thinking cap on!

 

Abnormal... Great

10 days and several chasing phone calls passed between having my nerve conduction tests and finally receiving a phone call confirming my NCS results had been received. The results were “Abnormal throughout”. Abnormal how, they couldn’t tell me, but further tests would be required. Great. Being told this information via a doctor at Robin Lane Surgery was frustrating (although not in any way the GP’s fault), as they are GP’s and not specialists they couldn’t answer my questions about what these results meant or what could be causing the abnormalities.