Speed of degeneration

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PDaddy

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I was DX 4/2/08 with upper and lower MND but my legs are still undamaged. My left hand is about 60% of it's strength and up until a few days ago my right hand was 100% strong. Both arms and shoulders have constant fasciculations and my arms are now showing atrophy. Two days ago my right hand went from 100% down to about 70% overnight. Is that normal?
 

vmd

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That does not seem normal. How do you measure your decrease in strength?
 

PDaddy

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My percentages are totally arbitrary. I'll ask the dr next visit.
 

andyvaughn

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Pdaddy. - my husband was diagnosed 2/20/08, in hindsight his first symptoms came on about 11/07, but the first noticable symptom was his speech slurring, starting in Jan, followed immediately by right arm fasciculations, and loss of mobility then strength. It has now moved to his left leg, is starting on the right, and the fasciculations are also starting on the right.
So, in that sense, my husband is also experiencing a very rapid progression. However, I do know that some patients have a very rapid decline then plateau... which is what I am hoping for, and that some things are not ALS. For instance, he hurt his right shoulder, we were terrified that it was ALS moving on, and in a few days it was better. What other people further along than us have told us is that especially in the beginning it is natural to think everything is ALS taking over.. and some of it is, but hopefully some of it isn't...
I hope it slows down for you. We seem to be seeing a slow down in the past 2 weeks or so, don't know if it is a platuea or the lithium is working? But, nothing new has given in for at least 2 weeks...praying it stays that way for a while...
Andrea wife of Pals Jim.
 

sharonca

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Pat - sorry to hear of your progress. Do you have a lithium blood level yet? I just had another blood test today and will know more tomorrow. I stalled in progression in my hands after two weeks on Lithium.

Sharonca
 

PDaddy

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Thanks, so far, after the first week, my Lithium level was 0.1 but my liver was one tad over normal. I will get week 2's results tomorrow or Thursday. I too hope it Plateaus soon.
 

andyvaughn

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One other thing, I thought of this morning, my husband was very very weak in his first weeks on rilutek, and again he was very weak in his first week or so on lithium. He finally adjusted to the meds, but the first couple of weeks on rilutek were very scary. He did finally adjust though, and has more energy now that he has been on rilutek 2 months, and lithium a month...
Andrea - wife of Pals Jim.
 

Farmgal from ND

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I was DX 4/2/08 with upper and lower MND but my legs are still undamaged. My left hand is about 60% of it's strength and up until a few days ago my right hand was 100% strong. Both arms and shoulders have constant fasciculations and my arms are now showing atrophy. Two days ago my right hand went from 100% down to about 70% overnight. Is that normal?

Hi, Im a new member also, and I hope you dont mind if I ask you a few questions. What is MND ? I have about 60 % usage of both hands, I was diagnosed with PLS/ALS first and they put in a baclofen pump to control the spasms, since then I have about 60 % usage of my legs and now they say I have ALS. Do you have alot of spasms ?
 

vmd

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Motor Neuron Disease (MND), seems to be used as the overarching category of which ALS and PLS are examples. Others seem to use MND and ALS interchangeably. Apparently, in the UK, they refer to ALS as MND?
 

PDaddy

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Hi, Im a new member also, and I hope you dont mind if I ask you a few questions. What is MND ? I have about 60 % usage of both hands, I was diagnosed with PLS/ALS first and they put in a baclofen pump to control the spasms, since then I have about 60 % usage of my legs and now they say I have ALS. Do you have alot of spasms ?

Hi FarmGal - I guess the MND question was answered, but as far as spasms go, I don't think I am having those. However, I have CONSTANT twitching (fasciculations) in my upper arms, forearms and hands. So far, knock on wood, I only have rare twitching in my legs.
 

Farmgal from ND

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Thanks for answering

I think I am taking a few bad parts with me in every disease I get, like I said I get bad spasms and needmy baclofen .Now whats ahead of us should be interesting to say the least. Thanks again and good luck.
 
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