Day 1 w/ Mayo & Co.

The hardest part about this tonight is that i am going to be honest about today. It's hard because I know that everyone reading this is hoping for a post that is uplifting and positive, something that expounds on the vast curing powers of the Drs here beyond any of the other people we have seen over the past two years. Unfortunately, we didn't find that.

The complex here is vast. Via the skyway and the "subway" from our hotel, it takes about 20 minutes of walking to get to the Mayo and Gonda buildings, the main treatment areas of the Mayo Clinic. The subway is not a subway in the sense of NYC (or much less the sandwich shop), it's a subway in the sense that you can walk sub-terra to avoid the frigid temperatures outside. Either way, i'm thankful for it this week as it was below zero this am when we went over there and the temp never climbed above 20 even though it was crystal clear outside.

When we arrived there shortly after our appointed time of 6:45 to registration, I discovered that Murphy's Law was firmly in place because the backpack that we thought had H's wallet in it, did not. The nice people there let us register without the "required photo ID" and the insurance card, but we still need to check back with them. Subsequently, I ran all the way back to the hotel room to look for it, and luckily found it in a different bag and returned in time for our 7:30 check in at floor 8 of the Mayo building.

The foyer of the buildings is what you wuld expect from a Medical Mecca. It is huge, grandiose, and filled with deeply stained wood, rich leather chairs, 60 ft. cielings, marble, granite and shiny placards with the names of the people who have undoubted given their lives, their life savings or some portion thereof to be recorded in the history and build the reputation of this impressive, imposing and yet lively feeling place.

After our bleary eyed wait and chance encounter with a nice older couple from Greeley, we were called to the treatment/meeting room. Our meeting with the Neurologists lasted 3 hours, give or take, and included a full historical perspective from us on Heidi's case as well as our suspicions regarding the blood transfusions she had in April of 06 related to the emergency surgery she had then, et cetera. First we started with a young lady neuro, named Dr. Leap (I think) who was very nice and compassionate. She was the one that listened to the whole story and then gave H her exam. She left to go over the case with another Dr. named Dr. Kumar who was clearly the "senior guy" on the case. About 20 mins after she left, they entered together and he was very direct and somewhat coarse. Not that he didn't say all the right things in terms of "we know this is hard, and we hate to tell anyone that they have a MND or ALS," but he wanted to review any "evidence" we had that there was potentially a Lyme disease component to the problem and dismissed the likely "cause" being blood transfusions. Because all of our papers were not perfectly organized, it took us a while to find the couple of papers that, combined with his lengthy symptom review, caused Dr. Phillips in CT to clinically diagnose H with Lyme. During this time, Dr. Kumar was pretty, how shall I put this..authoritative...about his view around Lyme or any other Infectious disease and it's relativity to ALS or H's condition.

His view, as I perceived it was this. Essentially, even if there was a lyme infection, that the 6 months+ of various antibiotic therapies should have addressed it, and besides that, even if one did currently exist, it most likely has nothing to do with her current condition. Our other Dr. the young lady, mused that H may be the victim of "a perfect storm" of things that may have caused her condition. Either way, they recommended that we do, and Heidi go through, another EMG.

For those of you that don't know, this procecure would sound more like a torture regimen vs. a test if I described it in detail, but according to Heidi "it's not all that bad." Let's see if you think this came out of a log in a forgotten cell in some third world country with liquid oozing through the walls and a tepid stench eminating from the corners.

"First we will ask you to undress and wait for us to enter, then we will attach electrodes to various parts of your extremities and run electrical current through them to record some data. It probably won't hurt too much. Then we will take needles and insert them deep into the muscle tissues of those same extremeties and run current through them and record some more data. We'll keep moving the electrodes and the needles around from place to place until we get what we need from you."

Now, bear in mind that nobody here wants to inflict pain on anyone, it's just part of the job, and honestly, the Dr. in the EMG room was as nice as she could possibly be, given the job she had to do.

In any case, tomorrow we have another consult with them, and Dr. Kumar did agree to have some blood drawn to do a Western blot as well as some serology (which I think means that they look at the live blood.) Just in case, I guess. We pretty much already know what the WB will say. I have some hope that the look that they take at the blood itself will show something that they do not expect and can further treat.

for all the world, I hope that they also find something in the EMG that indicates something other than the indicators for ALS. That is what we came here for, and why Heidi underwent the procedure again. The hope there would be Multifocal Motor Neuropathy, which is a treatable auto-immune disease that mimics the symptoms of ALS.

Since then, we have had a pretty rough day. A lot of it is because we are going through the same feelings and "news" that we got two years ago. Just this time, it's from the folks in whom we have placed some of our last reserves of hope for a cure to this thing.

So, no philosophy tonight, just the events of the day. Right now, we do have an appointment for Thursday with an RN that can point us towards what to do next, but if we don't get some good news tomorrow, we will probably get headed home and do the same with our local community in Colorado. Peace Out.
b.