The Results Are In

Aug 23, 2015

+256

My appointment with my neurologist started as usual; 35 minutes late.

I’ve always had an easy relationship with my Neuro and today was no different.

I was greeted warmly, exchanged niceties and went through the usual tests (reflexes, strength, tandem walking and hand / eye co-ordintion).

Blah, blah, blah….

Neuro: “Your blood work looks good, and your Haematologist said how nice you are.”

Derr…

Me: “Yep, I feel good – fatigue has gone, cognitive function is better, bladder issues resolved and walking still wonky but some days are better than others”….

On the light panel the MRI films are posted, flipped around and compared.

What is she comparing?
My Pre HSCT MRI: 19 November 2014 v. POST HSCT MRI: 20 August 2015.

I see that I still have a brain. Phew. That’s a start.

She reads the report.

I hate it how they now email the report to the specialist it was a lot more fun scary nosey interesting when you they were included with the actual scans and you could read them yourself and refer to Dr. Google.

Did anyone ever actually wait and let their doctor open them?

Anyway…

What does the damn MRI report say?

Small talk… Small talk… Small talk…. 

Neuro: “NO NEW LESIONS…, NO SIGNS OF ACTIVITY…, NO PROGRESSION….”

What does that actually mean?

It appears that HSCT has done it’s job and halted the activity and progression. It’s the result I hoped for. It’s the result I expected. It’s the result I’d planned.

It was agreed that there was little point in having my usual bi annual appointment, so we made one for 12 months down the track and again I’ll have another MRI done to track that there’s been no further activity.

After contacting my nearest and dearest and letting the news sink in, I put one foot in front of the other and carried on with my day. Just how one should.

I also emailed Dr. Fedorenko and his Assistant / Patient Advocate, Anastasia.

They replied:

Dr. Fedorenko:

“I am happy.”

Anastasia:

I’m so happy with this results!!!!I

t’s very good and wonderful news for me. 

You made my day!!!I’m smiling a lot!!”

It needs to be remembered that recovery is a 1 – 2 year process and I may yet encounter some hurdles – we’ll wait and see, but this news is good.

It’s very good.

FSJ xox

ps: It’s not mandatory that you see a Neurologist post HSCT and some people I know are confident of their outcome as reflected in their symptomatic improvement. However, by documenting my results through MRIs and face to face contact I believe it’s a way of *paying it forward* and helping HSCT become recognised by the broader medical community through evidence, not just from comments and hearsay.

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