I haven’t wrote in a while, but I may be loosing my chance. For the last 2 months, I have had pins and needles in my left hand. It may only be a relapse, it may be the start of something bigger. I have been with out meds in over a year, haven’t seen my doctor in even longer.
I have an appointment set up for the end of this month, but I really don’t know what damage is really taking place. It makes me really question my future and what exactly I am working to do and be. Is my work with studies and future going to be all shot down by something out of my control. For the first time in my life, I’m unsure about anything. I don’t know where I’m headed and why.
All I do know is I can’t button my pants, have a hard time picking things up, and being left handed, it causes quite a pickle in my life. I am being tortured by someone or something, and I am not really sure what I did. Well, whatever or whomever it is, I submit. I don’t want to do this anymore.
I haven’t wrote in here in quite some time, so I’d like to share some things MS related I’ve recently read. First, 2 more patients developed PML (progressive multifocal leukoencephalopathy) from treatment via Tysabri. Since the FDA already “black-labeled” this drug for risks of this exact thing, and neither patient has yet died, and the risk-reward of the drug still outweighs the bad.
I also have read about some promising treatments, such as caffeine and a new pill drug for relapsing-remitting ms called Laquinimod. Laquinimod is now in phase III trial, which means it could be less than 2 years away from release to public. I HATE SHOTS, and would love for this drug to take off. I take a daily pill already for my hiatal hernia, so another pill is not a big deal to me.
Caffeine you say? According to an article I read, and tested on mice, the caffeine blocked a compound called adenosine that triggers the events that lead to the mouse form of MS. Does drinking more coffee help? Ehh, maybe not, but the equivalent to 6 cups a day blocked this compound and in some cases reversed the effects. Shit, I drink about 12 so if it does help, I’m all set.
This week, National MS Awareness Week. So, hug your happy MS patient and dontate to the cause.
Ok, a little exagerated, but my lungs really ache and its seems compressed from quitting. Hopefully that goes away sooner than later because its annoying. Kind of make me want to go run or something.
Side note, last night after my softball game me and most my team went to Applebees. My brother and girlfriend went to the bar to smoke. I followed just to smell it. Well, my brother blew smoke at my face, and honestly it smelled like shit. The stale, nasty cigarette smell you can smell on people and in smoker’s houses, it was that. Nasty. Then today my buddy at work is outside and I’m telling him this story about last night. Well, he is smoking, and I ask to take a hit to see if it tasted different. OMG how gross. How it smelled yesterday it tastes worse. I think I am past the point of craving getting cured by smoking. I just have to figure out how to surpress that “need” and I’ll be set.
Ok, no cigarettes since Friday. Just when I need one so bad and I’m determined to cheat, I get distracted by something. Thank God for horrible short term memories. Now that I have quit for like 5 days, I’m bored. I smoked alot when I was bored, now I have nothing to fill that slot. Hmm, I’ll figure it out.
Ok, my wife and I can’t afford cigarettes anymore, so I either a) start buying them internationally or b) try quitting again.
I’m going to go with option B. We will see how that all goes. My stomach pains are still prominent after 1 year of having them, and with 8 months of Nexium, Pepsid, and Prilosec. Time for a new GI doctor, eh?
The MS…no developments. I guess thats good news. MRI came back with less legions than the last, so less is better than more. I suffered some numbness in my right hand earlier in the year, but that has since passed.
I also finished my deck last weekend!! All thats left is a bit of sanding and some lattice or something at the base and the project from hell is complete. Now I can maybe start on my front ggrass landscaping. Sigh…
Anyway, thats it for now. I need to get back into the habbit of writing here more, I’ve been real lazy with it.
I had an MRI on my neck last week, and my doctor left a message on my machine at home about how these results turned out better than my MRI a couple years ago. So I suppose thats good news, or at least tells me that my meds are working.
Tonight, I’m going to attend a webcast through MS Active Source about progression, how to detect and how to slow. Should be interesting.
If you haven’t checked out that site, do so because they archive the webcasts they perform once a month.
So, for the last 2 months, I have had an issue with my right hand in terms of numbness. Sometime my entire arm will feel freezing, sometimes just like my figers are asleep. Well, went in today for my 3-4 month checkup, and let me doctor know what was going on, along with the feet numbness that came and went. He asked me how it was affecting me. I told him in terms of daily funtion, no effect. Annoyance? 100%
He proceeded to tell me that he knows me as a patient enough to know if I tell him something is annoying, he knows it really is annoying. I’m not the type that calls him everytime something goes numb or whatever. He gave me an option; 1- Take SoluMederol drip and prednisone to aleviate it. I took option #2, let it go and save my ‘roids for when I REALLY need it. He agreed.
“So, Doc, when will this go away?”
“Well, it may not.”
Not the answer I was hoping to hear. This all is a mild relapse. Another comment I didn’t want to hear.
I need to take another MRI next week to see how the progression (or remission) is comming.
Being in that office today really made me realize how differnt my life is from your “normal” person. Kind of depressing that I may never have my life back to where it was. Plus I have to pay lots of $$$ for this “life of luxury”. I never signed up for this.
Ok, CVS/Pharmacy is pissing me off beyond belief.
They never get it on time, they always tell me “I haven’t been there in months” and lose my script. They will not deal with my scripts anymore.
I am going to try out a new service provided by Biogen/Idec that is a mail order system.
They finally called me after getting my RX insurance info and getting ahold of my doctor about the script. They are giving me one month of shots, a sharps container, and thinner needles. Plus, they didnt ask for $ up front so that is a multiple bonus too.
I like them already.
My Nexuim is also helping my stomach alot, that should be fixed in another month or so, but the heartburn amplifies with the pepsid and nexium, but I’d rather have that than the stomach thing.
Happy Hollidays to all!
Reading one of Erik’s posts reminded me to post about the horrible leg fatigue I have been having. Only if I lay or sit down does it seem to worsen, otherwise I seem fine.
Point A – Quit smoking
Point B – Begin working out again
Solution to fatigue – If my legs want to be tired, I’ll fekin give them something to be tired about!