Thursday, January 15, 2009

Starting with Neurology in March 2007

Heidi was referred to a Neurologist as her general practitioner was suspicious of her weakness. Initially we were worried about MS. ALS or Lou Gehrig's disease had not even crossed our minds. Really, we thought maybe she just had a pinched nerve or maybe something a little more serious like a slipped disc or something.

Based on an initial exam, we were scheduled for an EMG. I described this procedure in my Mayo Clinic trip blog here:
The description is about 1/2 way through the post. Heidi insists that its "not that bad." It doesn't look like any fun, that's for sure.

I remember we were looking through a travel magazine featuring Tuscany in Italy and dreaming of going there on vacation with the kids. I remember the tech was super nice to us and she helped helped Dr. Pratt with the EMG. Of course when you have an EMG requested by another Doc, you don't get any results, and in all the EMG's we have had, we never get any results right away. In any case, the Doctor did not say anything about what he saw during the test. The scariest thing I heard that day was from the tech as she left. She took Heidi's hand and said "Take that trip to Tuscany."

Of course, denial is not a river in Africa, and to us that day it was just a nice gesture from a nice person encouraging us to travel and enjoy life. We didn't know that she probably could have added "because you don't have a whole lot of time to do that type of thing."

As you can probably guess, the results of the EMG pointed to a neuropathy. Because these were early days, and Heidi really had very minimal symptoms, he was not 100% sure about ALS, and was hoping for something called Multi-Focal Motor Neuropathy, which is an auto-immune disease that acts much like ALS but can be treated with IVIG, which is IV administered Immuno-globulin.

Once this battery of meetings and bad news was delivered, we were referred to the CU medical center to meet with their head of Neurology at the time a Dr. Hans Neville, who has since retired. Dr. Neville seemed like a nice man who's job, as far as we were concerned, was to find something that Dr. Pratt had missed and tell us that of course ALS is not our problem because it doesn't generally affect young women and that it is....anything else.

So, he did his exam, Heidi did a breathing test and he wanted one of the Docs on his staff to to an EMG there at the new Hospital, with probably higher tech equipment, etc. So, another EMG was done, and the same results were delivered to us by Dr. Neville on a follow up. Essentially this: Sorry, we think you have ALS, this is a non-treatable fatal disease, you probably have 2-5 years to live and there's nothing we can do about it except try to make your life a little more comfortable as you go through this. Pure Devastation.

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