UMN Exacerbation

[Zaphoon]

I'm just going to come right out and say it... I believe PLS (and umn stuff in general) exacerbates. I'm not ready to say there is remission, just exacerbation.

This stuff has been ongoing all of the time! There has not been a day when the muscles have not been tight, crampy and twitchy but there have been periods when it has gotten worse. The worse goes away and the normal degree of tight, crampy and twitchy resumes to the "pre-exacerbation" period levels.

So, my experience with PLS has been permanent crappy with intermittent periods of, "Holy Spasticity Batman!".

We could turn this thread into something in the way of data polling for anyone that should want to troll their experiences with umn stuff.

PZ

[hopingforcure]

Kim,
I think that the UMN stuff can really make you feel lousy. I mean lousy.. I think the stiffness, hyper-reflexes, jaw jerk, and clonus, all STINK.. I agree someday's it is like a 10 on the scale, and then somedays it is about a 8. I am still HOPING FOR CURE for all of my friends..

[olly]

sounds soooo familiar kim.
i do call them remmisions though you never go back to the start before pls.
you do need to keep on top of your general health,any infection or illness can make the pls symptoms worse........especially the spasms.:smile:

[Big Mike]

I think it's safe to say that none of us knew what being stiff was like before getting this disease, especailly the UMN dominant people. I'm amazed (and horrified) how stiff and shaky my muscles are now, especially in the legs. At least the muscle atrophy aspect is slow to progress in me.

[Geo]

I think i ts called plateaus . MS has this alot. Whats bad about plateaus is just when you get use to compensating ,things change , I.E i think im having a really decent day , i get cocky and fall. So moral of the story DONT GET COCKY. Geo

[GlenBrittle]

OK , first of all , dont make look up those ten dollar words.

Now that I know , does a full body cramp count? 5am , and every muscle decided to twitch and cramp up all at once. Not fun.

First times are supposed to be memorable. NOT !

[joelc]

Enjoy them! Once they stop you stop too.

I am ready to experience them again! LOL

[Zaphoon]

I've got to admit, Joel, there is some wisdom in what you said.

[Geo]

Plateau,is a leveling off or flat area meaning your symptoms, level off , We are told that our motor neurons degenerate or die, much like MS the Relapsing Relenting MS symptoms can go away for a period of time then return ,they call this plateauing. Sclerosis is a degeneration process , much like arthritis .. I hope this clears the muddy waters for you Glen

[kevinw]

I think it's safe to say that none of us knew what being stiff was like before getting this disease, especailly the UMN dominant people. I'm amazed (and horrified) how stiff and shaky my muscles are now, especially in the legs. At least the muscle atrophy aspect is slow to progress in me.

I agree with "Big Mike".......I never knew what stiffness was until now, walking like the "tin man".

[Just J]

You folks are all pretty funny! Zaphoon with her "Holy Spasticity Batman!" and Geo I.E i think im having a really decent day , i get cocky and fall. So moral of the story DONT GET COCKY (how true this is). Anyway, a bit of comic relief and also some good information here. My husband's stiffness is also like the "Tin Man".

[jewel]

exarerbations zaphoon says it all but i have had good results w/tonic water for twitchy spasms

[Zaphoon]

I've tried the tonic water and the pills called "Leg Cramps". Neither of them put a dent in the fasciculation/cramping activity. I will say that I can tolerate them, usually.

Zaphoon

[Judith]

My cramping was very bad. I took Baclofen for about a month, which helped the stiffness and cramping, but made me very nauseous, so I stopped taking it. I started doing ROM exercises every day and started taking more Magnesium and Calcium. It helped me a lot. I don't have the cramping now.

[Zaphoon]

I was taking magnesium supplements on a daily basis but after having no effect, a neuro from the clinic advised me to stop taking it.

Kim