Wednesday, 19 June 2013

Evaluation [Day 4]

Then came Wednesday!

Our meeting with Dr Allen was scheduled for mid-day. He spent about an hour discussing my symptoms and taking my account of my medical history so that he had a good understanding of the current status of the illness. 

After knowing about the potential misdiagnosis of CIDP, everyone was concerned and wanted every bit of information thrown into the pot for consideration.

He left the room since he wanted to re-check my medical notes, and told us he would be back in 15 minutes. 

The minutes ticked by, and Dr Allen was nowhere to be seen.

He returned about an hour later, sat down and said “It's CIDP." 

It was a difficult diagnosis due to the nerve thickening, but other possible disorders were discarded by a process of elimination .

We have never been so happy for a diagnosis of CIDP!

Now came the discussion with Dr Burt later this evening ..........

By 7pm I hadn't heard from Dr Burt so I decided to call him. He said that Dr Allen had confirmed the diagnosis of CIDP, but despite this he was still really concerned about the nerve thickening. Dr Burt kept reiterating that he had never ever seen such thickened nerves in a patient with CIDP.

But he was happy to go along with the diagnosis given by Dr Allen.

He told me that I should not expect anything more than a stop in the progression of the disease, since the thickened nerves threw him into uncharted territory. He also told me that if the nerve thickening continued, the nerves in my spinal cord would be strangulated which would cause further issues for me.

So on that basis, given that there were so few options left for me now, he would accept me on the trial.

It was a great relief to get the acceptance, but there was obvious disappointment at being told that any recovery would be limited.

But every cloud has a silver lining, and the one for me was that my illness did not have genetic causes, and my girls were safe!!

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