RRMS vs SPMS

Those are 2 different types of MS: 

  • RRMS – Relapsing Remitting Multiple Sclerosis
  • SPMS – Secondary Progressive Multiple Sclerosis

Most people at onset are diagnosed with RRMS.  This form manifests itself by the patient experiencing “flare ups” that last a few months and then eventually everything just goes back to normal (like nothing ever happened) – case in point, in 2007, 2! years after being diagnosed, for 7 months of the year, i had double vision and a feeling of being high and no motor skills (amongst other things) – wasn’t cool at all and then jsut as quickly as it started it stopped and things went back to normal.  If u ask me, that really was the only MAJOR flare up i ever had.  There hasn’t been another time when things were crazy for any length of time and then nothing.  Now, don’t get me wrong, my feet/arms tingle (like that feeling just before a limb goes to sleep) off and on and a few other things, but nothing major – at least in my book.

Most people diagnosed with RRMS eventually develop SPMS.  This is charachterized by a progressive worsening of symptoms – which may or may not be accompanied by flare-ups.  I have a feeling (what with my medical degree and all!) that i have developed SPMS.  I have had no flare-ups since my first one – i lie!  i had 2…2 years prior to my being diagnosed, my vision did something odd and no one could figure it out.  that lasted some months as well and then things went back to normal.  My walking has gotten progressively worse over time and again – no flare ups!  I used to hope that the walking was a flare up but I’ve pretty much given up on that now.

I have a routine visit with my neuro next month and 1 of the questions for him will be whether or not i’ve developed SPMS (great! just *&^^* great!!!).

Tropical "Strain"

I am convinced that my strain of MS is tropical and hates the cold weather (0r maybe just Atlanta)!  Went down to Miami this past weekend and not that i didn’t have issues, but i certainly didn’t struggle as much as i do here sometimes.  I’m going to have to move to FL…it’s already been cold a few mornings here – it’s time for me to go into hibernation.

i actually used the cane everywhere i carried it – i’m getting used to it now.  Took it to all the fetes, even took it on the road.  Of course, i can no longer play mas, but K is a good friend of the DJ for one of the bands and arranged for me to be on the (music) truck.  I lasted the entire day on the road – cane and all – and had a blast!

not the truck i was on, but u get the picture
I was actually having 2nd thoughts about going on the road, but i’m really happy that i did, even though i got ah lil emotional when the band crossed the stage.  Not being able to play mas and really enjoy myself in a carnival fete are 2 of the things that REALLY upset me. 
  • We go to a fete and i have to siddong (sit down) most of the time – that SUCKS!
  • We play in a band and i have to ride on the truck and not be on the road – that SUCKS ASS!
but!  I will look on the bright side of things – i can go and enjoy myself in my own way, besides which i don’t think that any of my friends will allow me to stay home!

Tropical “Strain”

I am convinced that my strain of MS is tropical and hates the cold weather (0r maybe just Atlanta)!  Went down to Miami this past weekend and not that i didn’t have issues, but i certainly didn’t struggle as much as i do here sometimes.  I’m going to have to move to FL…it’s already been cold a few mornings here – it’s time for me to go into hibernation.

i actually used the cane everywhere i carried it – i’m getting used to it now.  Took it to all the fetes, even took it on the road.  Of course, i can no longer play mas, but K is a good friend of the DJ for one of the bands and arranged for me to be on the (music) truck.  I lasted the entire day on the road – cane and all – and had a blast!

not the truck i was on, but u get the picture
I was actually having 2nd thoughts about going on the road, but i’m really happy that i did, even though i got ah lil emotional when the band crossed the stage.  Not being able to play mas and really enjoy myself in a carnival fete are 2 of the things that REALLY upset me. 
  • We go to a fete and i have to siddong (sit down) most of the time – that SUCKS!
  • We play in a band and i have to ride on the truck and not be on the road – that SUCKS ASS!
but!  I will look on the bright side of things – i can go and enjoy myself in my own way, besides which i don’t think that any of my friends will allow me to stay home!

Ramblings…Post about Nothing

Most times when I go for my infusion, i see the same people.  That only makes sense since it’s supposed to be done every 4 weeks; so we are all on the same schedule.  Every so often tho, I will see a new person or 2.  So this last time (once again only stuck once – WOOHOO!) there were a few people who actually walked/looked like they were suffering from the same symptoms (y do i ALWYAS have to use spell check with this word) as me.  They say that misery loves company, and i am really beginning to totally understand how true that really is.  of course, on the flip side, there was also a woman in a chair…oye!  Now this woman had been there from 11-2:30 because they were “trying to get a good vein”.  They eventually had to send her home to come back some other time (didn’t macco (be nosy) well enuf to know when) because after 8tries (and letting her rest in between) they gave up…WTF!!!  hopefully i’ll never have that experience.

i was looking at my feet the other day and it dawned on me that the veins there look perfect (to my trained by the internet eye).  Don’t know if i’ll ever muster the strength to go there (is that normal) but they appear to be bigger and more prominent than those in my arms/wrists.

The nurse who’d spoken to me about using a cane at the infusion center was so very excited and proud of me because i had actually gotten 1.  She noticed it right away and told me that i’d made a good choice and i won’t regret it.

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