So I took another seat in another waiting room and tried to regain some sensation in my feet. Fatigue was now commonplace among my symptoms and any distance of unassisted walking required a regular sit down to recover. As soon as I perched my posterior I was summoned by Dr Smith (Neurophysiologist) to “the chair”, and after a brief explanation of my mornings activities in the adjacent building we got down to business. I was given a second and much briefer physiological examination, and was told once again that the reflex in my hands, biceps and ankles were unusually weak. I was also asked if I thought I was improving. At this point I thought my symptoms had reached a plateau, and although I had some very unsteady days it appeared that the worst was over. My reply - “Yes, I think I am, very slowly but I think I’m going in the right direction”. That said, I sat down got strapped up and plugged in (not quite, but it sounds more exciting than what actually happens), and before long I was receiving “electric nerve stimulation” or in every day speak “being electrocuted”.
The sensation was still unpleasant and the NCS quickly confirmed that the nerve reading were once again “abnormal” and consistent with a demylinating neuropathy. Thanks to Google and my previous discussion with Dr. Azam I quickly blurted out a list of potential neurological disorders that I had read about, consistent with my symptoms. Dr Smith did seem slightly scathing of Dr. Azam’s diagnosis and treatment requests stating “this isn’t muscular, he quite clearly hasn’t seen my report”. My initial thought was “no one bloody has!”, but went on to say that he suspected that I had developed mild Guillian-Barre Syndrome (GBS) (something that I was already familiar with thanks to Google). GBS is a fairly rare demylinating neuropathy that with enough rest I should make a full recovery within 6 to 12 months.
I asked about appropriate treatments to relieve the symptoms but was told that as there are associated risks and because I believed I was making improvements no treatment should be necessary. Finally I was getting answers and starting to feel some relief, although admittedly I was quite perplexed as to why I wasn’t to receive any treatment, and only if I got worse was I to request a referral back to Dr. Smith.
Still, I left my second appointment feeling more assured
than I had in weeks and slowly hobbled my way back up to the Jubilee wing where
I was to have an ECG and a final chat with Dr Azam. The ECG was over in a
matter of seconds (ticker all working beautifully) and before I knew it I was
having some blood taken for my third test of the afternoon. Dr Azam graciously
made time for a quick catch up to discuss my second NCS with Dr. Smith and
unfortunately seemed unconvinced that GBS was the likely cause. The onset of my
symptoms was too long in manifesting for GBS to seem probable, and after
another chat with Dr. Dunn it appeared more likely to be something called Chronic
Inflammatory Demylinating Polyneuropathy (CIDP), but the extra tests I was
having to double check should confirm or dispel this diagnosis.
This was news
to me, and something totally new. Clearly my Googling skills left a lot to be
desired, especially after leaving such an enormous stone unturned. With the
shake of his hand I left the hospital and began counting down the days to my
follow up appointment - Hoping to shed a more educated light on CIDP.
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