Reaching out to a Community of Support

November 8, 2019

By Joshua Koch on 11/8/2019

We are still in Baltimore seeing specialists and having many, many tests. Just met with the 2nd neurosurgeon to tell us that Josh has C1 & C2 instability (first and second discs in his C spine), also called AAI. This could possibly be causing many of Josh’s symptoms of confusion, memory loss, incontinence, weakness, headache and more. All from reduced blood flow to the brain along with possible constriction of CSF (cerebrospinal fluid).

The ivig (immunoglobulin) infusions we were so desperate for have been approved and scheduled for the week of November 18th. These would help if Josh’s issues stem from something autoimmune…if not, they won’t help. Now trying to decide which direction makes the most sense. Such a tough decisions! The ivig is of course less invasive, but not without risk and takes months of infusions to see results.

Josh still has a lot of blood tests yet to be taken, we’ll work on those this week. Also setting up a visit with a neuro urologist to try and figure out what’s going on there.

Thankfully there’s a Whole Foods on the next block so I can walk over and get us some food for the week, Josh still can’t eat much in the way of solid food, but he looks forward to the blackened salmon and dairy free ice cream daily.

Thanks for all of the well wishes and encouragement, we are both weary from this ordeal, but I’m not going to give up until Josh is on the mend, this is no life for him. A year ago he was hiking and traveling and now he is bed bound and in a wheelchair for any distance. We just have to figure this out.

Hugs to all of you.

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