trying to figure this stuff out...

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macdonas

Active member
Joined
Dec 1, 2009
Messages
51
Reason
DX UMND/PLS
Diagnosis
09/2008
Country
CA
State
BC
City
Prince George
:confused:Hello, I have been following this site for a while now and it is nice to know there are others experiencing weird stuff like my husband and I. I have MS and my husband has PLS. We were diagnosed within 9 mos of each other, which we are told is statistically unearhd of.

Just wondering if you folks with pls experience transient symptoms like I do with my MS. Trying to understand what's happening to my husband. I know with my ms my sysmptoms come and go. Does this happen with pls as well? Lastnight my husband's arm flung up and he spilled a glass of water and it sure surprised him. Does this mean this paricular muscle spasm will stick around? When new things like this happen he feels he is getting worse. Any suggestions?
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*unheard of* (typo):shock:
 
hi.:-D welcome to the forum.
when i first got ill i was evaluated for ms for several years with repeated mri's but they kept coming back clear,then finally diagnosed with pls (living with pls 10yrs now)
as you may know there are similarities between the two,ms effect white and grey matter were as pls effects just grey matter............so ms can have many umn symptoms like pls.

when your husband get sudden involentary movements these are myoconic jerks,i get them though not as bad as when i first got ill(i have been on baclofen for 9+yrs now)
mine effect a limb or the right side of the torso,sometimes i get a slight shock feeling a split second before it happens.

as in ms,als or pls everyone is different. in each it can develop slowly or be chronic progressive.
pls does tend to be slow over a few decades.
the body never fully recovers from an umn episode (lesion) but the severity of the symptoms can wax and wane.............unfortunatly though slowly disability is increasing.

is your husband taking baclofen or any other meds,especially for the myoclonus?
many can not tolerate baclofen,for me it was a life saver and i know i would have very limited movement and ability today if i had not been on it.
for those who can not tolerate it in oral form a baclofen pump is brilliant.

if you have any more questions please feel free to ask.
we are very friendly and willing to help each other through any problems:-D
 
My husband of 5 years is 3.5 years into his Dx of Upper Motor Neuron Dominant A.L.S. Baclofen has helped him too. He sometimes requires help carrying glasses of water etc, since his balance and spasticity are so bad. I'm a huge advocate for nutrition and have seen first hand the effect a good diet has had on my husband. If you aren't eatng really clean perhaps considerer going towards whole foods and away from anything processed. Many people with M.S. also experience fewer bad days when they stay away from highly allergenic foods like wheat , corn, dairy, soy, citrus...Good Luck.
 
I have PLS and have an older sister that has MS. She is secondary progressive at this stage.

I have experienced constant leg cramps but spasticity comes and goes with varying degrees of intensity. Knock on wood, I've not had any balance issues but went through a bout of steady weight loss and regained it plus some. Haven't had any weight loss for about a year now.

I have myoclonic jerks late at night while in bed and usually just in my right shoulder.

I think my symptoms are due to something I ate that didn't agree with me a while back and it should all pass any day now.!
 
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...speaking of relatives having neurological problems as well...My mother divorced my biological father when I was 3 and married a wonderful man whom we call DAD! Anyway, we kids never heard from the biological father again UNTIL...a few years ago us "kids" were contacted by siblings we didn't know we had by the biological father. It turned out my biological father died of Parkinsons(he was a cropduster exposed to DDT a lot)....I am the only child of that father to have ANY neurological affliction.
Some say we can be predisposed to neurological conditions by heredity and it surfaces as a result of an illness or physical trauma...
Anybody have any neurological conditions in their parentage?
 
Here's my follow-up. Thanks for the info re: myoclonic jerks.... my husband is not on baclofen, but I will google it.
My paternal grandomother had Parkinson's,.
I am not sure what precipitated my MS, a surgery a few years earlier that was traumatic, the death of my Mother led to some emotional trauma... can emotional trauma trigger this neurological crap?
Cheers, s.
 
Some people think that severe physical or emotional trauma can cause MND's but there is no real proof yet.

AL.
 
Thanks for the info Al.
 
My friend has ALS and her mom has MS.
 
wow- weird hey?
 
Some people think that severe physical or emotional trauma can cause MND's but there is no real proof yet.

AL.

I have know idea if it had anything to do with my diagnosed, but my symtoms started the same year that my 16 year old daughter was diagnosed with thyroid cancer. My motor neuron symtoms started during that summer and got worse into the winter. I started with all the doctor visits and testing that winter, and was diagnosed the next spring.

Lord only knows if the two had anything to do with each other, but I sure can tell you that it was not a fun "2 years" in my household......but, you play the hand your dealt.

As hard as it was to have my daughter go thru that after she was so active in basketball, softball, and tennis (also, the excitement of turning 16 and looking at her last year of high school).....I still don't consider it proof that it was a "trigger".....but who know's?
 
Yah, I hear you. I sure hope your daughter is all right now. On my daughter's 16th the eye specialist who saw me said, "Well Mrs... either you have had a stroke or you have MS because your eyes are fine (I was mostly blind for a few months). I went home and pretended nothing happened and threw a party for our daughter. It was a hard day, but not as hard as your daughter's 16th birthday with her diagnosis. I am sorry to hear this and i wish you and your family all the best.

Maybe I am just desparately searching for the answer to the question "Why?" - a normal step in the grief process. The chaplain at my work place told me, maybe the lesson has nothing to do with you and everything to do with someone else's life who yours might touch. My response to that was "You mean we might go through all this so some other Joe can learn what he needs to about his life?... are you kidding?" She said, "No, and yes, that could be right".

Geesh. I am trying to learn to be more gracious.
 
Reminds me of the book THE FIVE PEOPLE YOU MEET IN HEAVEN, by Mitch Albom.
If you get a chance, it is interesting and actually heartwarming. (IMO)

It is not long and an easy read- can finish in 1 day.
 
...speaking of relatives having neurological problems as well...My mother divorced my biological father when I was 3 and married a wonderful man whom we call DAD! Anyway, we kids never heard from the biological father again UNTIL...a few years ago us "kids" were contacted by siblings we didn't know we had by the biological father. It turned out my biological father died of Parkinsons(he was a cropduster exposed to DDT a lot)....I am the only child of that father to have ANY neurological affliction.
Some say we can be predisposed to neurological conditions by heredity and it surfaces as a result of an illness or physical trauma...
Anybody have any neurological conditions in their parentage?

my son has als my uncle and his son both died from hunting's disease thyroid disease run ramped in our family and another son and i have slow healing muscles but i think that is due to thyroid problem . i am the only one with asthma now copd .we also get a lot of muscle cramping... lot of grandchildren has asthma
 
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