Wednesday, August 26, 2015

Month 7 - Need to Rename Blog

The name of this blog is obviously not accurate at this point.   I was hoping to blog about a positive result and that has just not been the case.  So the first question is whether to blog at all?  My rate of entries has gone way down but I am still adding the occasional article so I guess I will keep posting as the mood strikes me.

So what to call the blog?  Maybe just Fighting MS.

I am still going to try to be open in my posts but the high likely hood is that I will not tell all.  Some things are just too hard to talk about.  Some of the things that I may mention might also be upsetting to some readers.  I dunno.  We will see.

Tuesday, August 25, 2015

Month 7 - Everything in Slow Motion

I used to be in a hurry.  Not sure I knew why at times but in a hurry.   I still feel that urge, which is really strange because I am retired and while I am busy there is nothing that I am doing that requires me to hurry!

Unfortunately even if I did need to hurry I could not.   I guess this is relative.  There is my normal pace which varies from slow to really slow so I guess on a really slow day a hurry could be just slow? I don't mean just walking either.

There were times on business travel where I could wake up, take a shower, dress, and be in the hotel lobby in 10-15 minutes.  This was usually when I had gotten a call from my boss who was in the lobby ready to go and asking where the hell I was so there was a sense of urgency!

Now taking a shower is 45 minutes to hour experience with an hour or two to recover from the heat.  Everything in slow motion from getting undressed, to getting in the shower, to showering, and then given the impact of the heat, down to extra slow motion for the getting out of the shower, dried, and dressed.  Frustrating but what can you do?

Tuesday, August 4, 2015

Month 7 - MS and Cancer

Everyone knows someone that either has cancer, had cancer and survived, or had cancer and did not survive.  With one in five people destined to have cancer in their lifetime the odds make it at least somewhat likely that the reader may face, or have already faced, the disease.

These numbers make it obvious why cancer research gets the attention that it gets.  Luckily there has been some spin-off from that research to the field of MS treatment.  The drug Alemtuzumab being an example (whether it worked for me or not)!

I can imagine a scenario where it was first realized that Alemtuzumab might help with MS.  Maybe this is far fetched and whimsical but here is what I would like to think may have happened.

Imagine someone with that is already suffering from MS getting the news that they have cancer.  As if things were not already bad enough they have a possible death sentence on top of a death sentence.  I would like to imagine that they are pretty severely impacted by the MS, severe difficulty walking, if they are not already in a wheelchair.   Part of the treatment that they get for their cancer is Alemtuzumab.  They have to be pretty depressed at this point!

Now in order for my story to have the ending that I want it to have they have to get the news that post treatment scans have indicated that their cancer is in remission.   Imaging the surprise of all involved, however, then the MS suffering cancer patient walks into their appointment to get this news rather than having to be wheeled in!

I know it probably did not happen like this but it could have....

Monday, August 3, 2015

Month 7 - Met an Alemtuzumab Miracle

Last week I was in Charing Cross for a follow-up appointment with my Neuro and visited the MS day ward to get my monthly blood test done.   While I was there I met a young woman that was one of the first MS patients in the UK to get Alemtuzumab. 

When she got the treatment a couple of years ago she was in a wheel chair and was not able to work.  She now walks quite well though still uses a cane for balance and is back at work.  This is what I was hoping for as a best case.  Well, not the work part, the walking part!

Unfortunately it does not seem that the treatment has had any impact and it really should have shown its face of improvement by now if there was to be any.  What I am seeing instead is continued disease progression.

The visit to the neurologist did not provide any positive light.   The scans show no new damage to my mylin (in the form of lesions) yet the disease has progressed.   It seems there are two flavours of that shows as lesions and one that does not.   The former is the one that responds well to treatments such as Alemtuzumab and the stem cell regimen that I was hoping might be a final chance.   The one that I seem to have is not so cooperative.

The next step is a PET scan to see if there are lesions that are being missed and a consultation with another neurologist for a second opinion.   The NHS is doing what they can.  I guess it is just a matter of hoping for the best.