RSS Feed

My Life with Multiple Sclerosis!

Life with Multiple Sclerosis

2015 October 17 : This blog is discontinued

Please see the new blog area from my main page. Thank you!
Posted by: SirGCal Comment

2015 September 23 : SURGERY!!!

Finally, they are at least going to TRY to fix something...

So, to summarize, over the last year I've gone downhill like a locomotive off a cliff. Nearly vegetative. New MRIs show nothing with MS. But they do show more extreme pressures on the spine.
Read More Posted by: SirGCal Comment

2015 August 11 : Getting worse...

My right hand has been steadily getting worse. I've started to dip into what is left over of my Oxycodone pills. I might have to start all of that up again. Going to be hard to do though when I can't get out to the doctors.

Ampyra may or may not be helping. Last time I stopped it I couldn't move at all. But being on it I can barely move at all. The fact that I sit all day doesn't help I'm sure.
Posted by: SirGCal Comment

2015 January 09 : New chair

I got a new wheelchair. Same one actually just size tweaked. It's an inch thinner seat and 4" thinner overall. It's also an inch taller which now I regret cause I have a taller seat pad also so I have to get a thinner seat pad.

I also got the smart drive power wheel assist module. Mixed on it. It vibrates a bit and the outdoor mode keeps getting me hurt. Needs another way to stop other then the button and/or an easier to hit button. I slam down on it and it doesn't register. It has 'wrecked' me a few times already including one header off a high curb which really hurt.

I think, at least for people like me, a better button might be a stick. Push it in any direction for a button 'hit' so all I have to do is slap the stick. And it would only have to be say 1/2" or 1" tall, nothing huge. But something I can feel.
Posted by: SirGCal Comment

2014 September 11 : New Wheelchair

It's time for a new chair. I can get one every 3 years, it's been 4. But I can also get a power assist module. This keeps it powered without a huge and heavy 'power' chair. Called the SmartDrive by Maxx Mobility, I've already confirmed it works even with my weight. They say the way it works also would give me a few days of power on a charge. Not super fast but more like a wheelchair cruise control. Push off and it keeps going. All for 14 or so more lbs of weight. I'd say that's worth it, especially on would-be longer trips.
Read More Posted by: SirGCal Comment

2014 August 13 : No Strength

It's been a while but I stagnated. Thought little things. I'll try to update:

But the summary;

Read More Posted by: SirGCal Comment

2014 June 02 : Still no results...

I've now changed to a gluten-free and organic diet to try to best this crap. Nothing so far. My eyes are double-vision all the time now, my right hand is totally numb. The face is worse and worse with pain/numbness all over.

New doctor is also clueless as what to do next... Sit there and die quietly but stay out of his hair... /shrug...
Posted by: SirGCal Comment

2014 March 10 : Blister better - Now what to do with MS

Well, the Gel actually seemed to make me stronger until my right leg exploded.

Although it did make me EAT like a horse again. I packed on another 25 lbs. It turns into a massive steroid in your body. Went from 225 to 250 again.

The infection and blister in my right leg is all but gone. So that's all taken care of. But I'm weak and useless again. I enjoyed the two great days I had with the boys but...

What's next?
Posted by: SirGCal Comment

2014 February 21 : I did 7 treatments of the Acthar Gel

and now have to stop. I have a boil on my leg that is HUGE. They started me on antibiotics to jump-start my immune system again.

And I'm having the worst day on record YET right now.
Posted by: SirGCal Comment

2014 February 19 : H.P. Acthar Gel

Holy crap! Dr. Thera prescribed this shot to me for 15 days. This stuff has a price tag of $32,500 PER vial and I need 3 vials for the 15 days. Talk about GOUGING!!!

It's also used for infantile spasms... (eek).

After the first few days, I actually felt better. But as time keeps going on, into the second vial now, I think I just had a really good day on my own more or less. I see Dr. Thera again tomorrow night. We'll see.

Imagine if Obama care had to pay for this shit... Not going to happen. And there is no Generic (of which we REALLY NEED THE FDA TO DESTROY THE GENERIC MARKET!!! But that's another story).
Posted by: SirGCal Comment