Lynn saw the hematologist this week to try to find out why his hemoglobin goes up and down. When we got the lab work back, his hemoglobin had dropped one point which wasn’t that bad actually. So then why does he get so cold so often?
The good news is that the doctor ruled out anything like cancer or anemias that are related to serious long-term complicated conditions. The bad news is that he’s not sure what may be causing it. He believes that it’s either due to malabsorption (his dietician votes for this option) or it could be due to something interfering with production. We found out that interferons can affect blood cell production. Did you know that? I didn’t.
He’s been in a study for five years that has him taking two different medications. It’s a blind study so he doesn’t know for sure what he’s taking but the options are either Avonex and a placebo, Copaxone and a placebo, or both Avonex and Copaxone. Based on the side effects he experienced, we’re pretty sure he’s been on both Avonex and Copaxone. The doctor thinks that it’s possible since he’s been on the Avonex for five years, that may be part of the issue. However, he says that there is evidence to suggest that part of the issue is inflammation.
Inflammation? Well, we all know that MS has inflammation at its root. After all, what is an exacerbation but inflammation at a nerve site? So maybe as his MS inflammation increases or decreases, his production may be affected.
The other thought is that he may have an MS lesion on his hypothalamus. The hypothalamus regulates body temperature. If he has a lesion short-circuiting his body temperature control then this may be a long-term symptom he has to address. Talk about being bummed out! That was rather depressing news. We wanted something he could do something about; not something related to MS! The hematologist said the coldness could not be related now to anemia because Lynn is no longer anemic…makes sense but then again, anemia, at least iron-deficient anemia, has a treatment. MS basically doesn’t when it gets to the secondary-progressive stage.
So now part of our “normal” life will be dealing with swings in body temperature. He’s having a really difficult time maintaining a feeling of “normal.” He either feels like he’s frozen to the bone…wrapped up in arm warmers, leg warmers, drinking hot tea, and putting on a snuggie; or he suddenly gets overheated and is ripping off all those things looking for ice water. The odd thing is too that if you take his temperature with a thermometer, it doesn’t really change. His temp is almost always 97.5 or thereabout.
Very disappointing news.
We did have some good news this week though—Eric, his son does NOT have MS!! He had an MRI on Jan. 24 and it was completely normal!. We were all very relieved. Lynn has always been afraid that he might have passed the gene to Eric and that he would end up suffering because of him. It’s a relief that is not the case right now. We know that just because he’s free of it right now doesn’t mean he will always be so but we’ll take it as good news for now.
So all in all, last week was a typical week living with MS. It had its good times and its not-so-good times; it brought new challenges and the use of old coping tricks. As with most of life, it’s best to take it one day at a time, keeping it flexible and adapting to the moment, and most of all, finding what you can laugh at each day.