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mikeb1

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PALS
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08/2011
Country
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State
nebraska
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omaha
After reading these forums i just don't understand about progression. Some people say they have slow progression but in 6 months they cant walk some cant talk. If this is the case then Im very lucky to have super slow progression for now I guess Or it hasnt hit me yet? i have had an increase in muscle cramps in both hands legs and arms is this a normal part ALS?
 

momap53

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05/2011
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EGA
Mike, are you taking anything for the cramping? I tried Baclofen without much success. My ALS Clinic Neuro put me on Gabapentin 3 X daily. This has been very helpful in alleviating the "cramping" that I was getting when moving a certain way. The cramps could be painful and stop the motion in it's tracks.
 

trfogey

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Trying to figure out whether or not your progression is fast or slow in the first six months after diagnosis is basically a waste of time and effort. Unless your progression is very fast, you won't really have an idea about your rate until the end of the first year. At that point, the more limbs that you have showing symptoms of ALS, the faster your progression is.

The real wild card is respiratory involvement. Some of us get it early on. Others get it later. The later the better.
 

mikeb1

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Messages
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PALS
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08/2011
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US
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nebraska
City
omaha
Deb I take Baclofen 3x daily. How Does Gabapentin make you feel? blah?
mike
 

hke2000

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CALS
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7/2010
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rth
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trk
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smwhr
In order to evaluate your progression rate it's also important to know the exact time of first symptoms .When we got the diagnosis, my husband's FVC was 80%, and he had bad balance and couldn't run . After a 2 years time from first symptoms ( bulbar onset) he can't walk without two persons help, he has swollawing problems , no writing, can't use his arms, hands properly. His speech is gettin worse day by day ,difficult to understand. I think his progression rate is fast. We bulbarians are unlucky........ Good luck to you
 

John1

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NL
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As HKE2000 points out, the date of symptom onset is much more important than the date of diagnosis. The latter can vary widely according to such factors as access to good diagnosticians and the nature of symptom presentation.

If you wish to find out how your progression fits into the general ALS population take ALSFRS-R evaluation (ALS functional rating scale with respiratory component). You can find it here:
ALS Functional Rating Scale
 

momap53

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GA
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No problems with the Gabapentin that I'm aware of.
Fatigue had been a chronic complaint for a few months even before my first charley horse in Feb/10. Foot drop was beginning on the R foot by spring2010. I gave up driving this July 2011 and started using a rolling/seated walker around the house. Just got my PWC last month as my left leg was beginning to weaken. I'm still using the walker for some things in the house. I have some difficulty turning in bed, can still bathe and dress myself, but with increasing difficulty. I'm having a bit of weakness in my right arm now (fascilutions were present there in Feb on EMG, but I was not aware of them.) No breathing or swallowing issues as yet. I had been having cramps and spasms occasionaly in both hands and forearms this summer and some spasms in my sides or back when making certain motions or trying to turn over in bed. I started on the gabapentin in July once I got settled into our closest ALS Clinic. It has really helped. I'm also in the Ceftriaxone Clinical Trial through my Clinic.
 

Will

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Joined
Dec 1, 2010
Messages
81
Reason
PALS
Diagnosis
11/2010
Country
US
State
AZ
City
Cottonwood
My PALS takes 1800 mg of Gabapentin a day...not for cramps, but for Trigeminal Neuralgia. It has caused him no problems, prevents the trigem attacks, and maybe prevents cramping.
 
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