Monday, August 13, 2012

Doin' alright... for the shape I'm in

Well, so far so good with the Copaxone. At each injection, I do experience the burning... and with some injections I get that 'knot' like feeling/appearance at the injection site.

I do have to say that it's been rather easy adjusting my schedule to include a shot everyday. I guess it's something that you just have to live with when living with MS. I'm still eager to hear about what's going on with BG-12 in the FDA approval process.

I really haven't been doing a whole lot lately. Seeing as the high has been over 100 each day, that's not including heat index, I'm pretty much confined indoors. The cooling products that I have do help deal with the heat... but of course it's still hot in general.

I did go to a softball tournament and we had a RV at the park, so I had quick access to the AC. When we got there, the ground was so hot... the black rock gravel was melting the soles of my flip flops, if that gives you any idea of how hot it was.

I've basically been a couch potato... reading books. The heat not only makes me fatigued, but makes my cog-fog bad.. and my spasticity. I did switch from Baclofen to Tizanidine... that change is a good change... I'm not saying my spasticity is completely gone... but it's not as bad now.

I have gotten a lot of feedback, concerning the meds I had referred to in my previous blog, so I thought I would give a more in depth talk about that.

So there are three that are being spoken about that are awaiting FDA approval: BG-12, Teriflunomide, Alemtuzumab.

So here is the overview...
BG-12, oral pill (twice a day). It has been on the market since the 50s' to treat psoriasis. The side effects are mild; (i.e. headache, nausea, etc.) and in most cases subside after a month's use. It's also been shown to repair damage done to the myelin sheath.

Alemtuzumab aka Campath and/or Lemtrada, infusion (5 infusions cycle). It has been used for cancer, however, once it's in your system... there is no "washing it out". The symptoms are a little bit more severe than BG-12; (i.e. Anxiety; diarrhea; fatigue; headache; loss of appetite; muscle pain; nausea; stomach pain; trouble sleeping; vomiting)

Teriflunomide aka Aubagio, has been found in Rheumatoid Arthritis Meds. Some side effects (i.e. nausea, diarrhea, colds, mild hair loss and/or thinning, back pain and elevated levels of liver enzymes)

So that's just a basic overview of what's in the MS treatment future. I'm glad to hear the strides they are making in the MS treatment options.

I am still waiting to see more things being studied for the MS symptoms. Yes I understand that they are really striving to help slow progression if not stop the progression in MS... but we also have to live w/ the symptoms everyday. 

I also want to hear more about research that is looking in to, cause of MS.. give us an insight as to how we got this disease in the first place. 

One thing I did find interesting... is I saw a talk with Montel Williams, speaking about his CCSVI experience. He basically stated he still has MS... but his heat intolerance seems to have gone away. So while there were plenty of believers that CCSVI was the cure of MS... I am wondering if it will be looked in to more for the heat intolerance factor for those with MS. It makes sense that if the vein is made "normal" that the blood flow would be the way it needs, and that would in turn control the heat intolerance... just a thought of mine. 

Something else I've heard a lot about, and I also wrote about it before, is MS in the media... how we have celebrities or famous people with MS... and they aren't "representing" MS the way it needs to be represented... and the bottom line is, What the hell is a person with MS supposed to be like? We are all so different... How could we have ONE person representing MS? I guess in my opinion, I want MS to be known, like Cancer... I want people to be educated about MS in general... not so much having one person representing what it is. 

The bottom line is... MS can be disabling... either visibly or not... or both. There are so many ways MS can effect a person... there isn't just one definition of it. If I had a dollar for as many times I heard.. "You look so good"... I'de be rich. The bottom line is, I try not to get upset about that anymore, because they are just trying to be nice... and nobody can "hear" my body screaming from the inside. 

Well that's all from me for now, back to being lazy on the couch w/ a book :) 
BTW -  50 Shades of Grey is AMAZING! 


1 comment:

  1. as usual-I enjoyed this post alot Ashley-lots of very pertinent info on the "new" meds waiting or FDA approval. I honestly don't think the medical community has a clue-I dont mean that to sound trite-but,NO MED has been proven to really work for the majority. I have no blockaage in my veins so the CCSVI would do nothing for me.I am glad there is ongoing research and trials and pray for the day when there will be definitivenswers and MEDs for all of us. Keep up the excellent work on your blog~