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rose

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Has anyone had this happen? I've just started getting them this week. (After my clinic visit, of course) This morning that is what wakened me.

I've had cramps in my shoulders where my neck connects ever since the beginning, but this is new. The pain is pretty intense running up my neck from my collarbone to behind my ear ~ first time I was afraid it was somehow connected to my eye problem, illogical maybe, but you know how the unknown and unexpected feels. it was like "am I having a stroke or something?" but then when I touch it, it feels hard like there is a solid piece of metal in there, so I'm assuming its a cramp.

I guess my big question is, is this significant in that cramps in one muscle mean that specific muscle is doomed to get weak in the future? Does anyone know what the muscle cramps actually signify?... they did give me a script for baclofen, but I have not picked it up from the pharmacy yet .... I think I've got the incentive now to get over there and get it!
 

sharonca

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Be watchful of your symptoms with Baclofen. Some people have noticed rapid progression - others no change. I only have neck cramps when I yawn. Get scared it will stick that way!

Sharonca
 

brooksea

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Rose,

My husband also has cramps in different areas around his neck. He says they are the worst! But since he's been taking 900mg Lithium per day, the cramps have almost stopped. Problem is his neck still keeps getting weaker and he tends to lean his head over when sitting in his recliner. His muscles are slowly atrophying in face and neck and shoulders now. If he stops taking Lithium, the cramps return with horrible fury! I use to put moist heat around his neck to try to resolve the cramping.

I guess everyone is different and I can't say if you will follow the same course as my husband. Actually he is doing quite well for having been diagnosed 09/06 with bulbar/limb onset.

Good luck to you!
 

jimmybob

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i also have cramps in neck muscles that produce a burning pain, but only when i yawn, as sharonca described. cramps and spasms go with the disease and can be triggered voluntarily or involuntarily. my arms and shoulders have atrophied to the point that my bones are covered by skin, but i continue to have fasciculations and occasional cramps in the remaining muscles.

with regard to baclofen, it is a muscle relaxer and can cause you to feel weaker. that is the effect of the drug, not an increase of the disease progression. i take 10mg of baclofen before bed to decrease the severity of leg spasms when sleeping. it helps me sleep through the night.
 

rose

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Thanks for the replies. They did warn me at the clinic that the baclofen could make my muscles weaker over time. The thing with my neck is new,and it is painful! Its not even the pain though that is bothering me as much as wondering if this means my neck muscles are involved now.... its not connected to my shoulder or back, its on the side/front.... I was advised to start out slow with the dosage and if necessary build my way up.
 

BLPhill

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Rose

We will start the baclafen together, I was prescribed it on friday, picked it up today but not yet taken. I also get cramps in the neck and agree they are the worst. The dr told me to start 5mg 3 times a day, then 10mg 3 times a day after 1 week. Go pick yours up and we can compare the pros and cons. I dont know what it means when you start to cramp in your neck, but neck muscles are slightly weaker since it started aprox 1 year ago. Take care Rose.
 

rose

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OK, we're baclofen buddies, Betty 8) I got to the pharmacy right before it closed.
 

joelc

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I also get cramps (charlie horses) in my neck, up the side of my face, in my esophagus, my trachea and just about anywhere you can think of. They get really interesting but don't last long so I have gotten used to them and just ignore them. They are much worse and more frequent if I don't drink enough water. As has been mentioned many times before Quinine is absolutely wonderful in preventing them. Drinking lots of Tonic Water helps a lot. I have not noticed this problem attributing to muscle atrophy.
 

rose

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Joel, thank you for noting that you don't feel there is a cause and effect for spasms & subsequent atrophy. I do get the esophogeal spasms, (gastro doc called them something specific) and have had laryngeal spasms, but these new ones are definitely my neck muscles, and more than anything I was looking for some reassurance that it was not a definite sign that weakness is going to start there. If it does, it does, but that's not the same as "it will" .... I do drink tonic water & it does seem to help.
 

BLPhill

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Rose

I think I will start mine tomorrow, I'm A big chicken when it comes to any kind of a pill. Gonna try to talk myself into it tonite. Although my cramps are very intense and I never sleep more then 1 hour at a time because they are very painful, you would think I would want to start right away. I'll just pluck my feathers and start tomorrow.
 

brendapals

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hey, can I join in the baclofen beauties club too?

I started taking mine 4 days ago, my dosage is 5mg at bedtime. The first night I took it, I slept til 10am the next day-felt like I had been run over by a truck or something. But I also could have just been exhausted from driving 4 hrs to my clinic visit, spending the night, going to the actual 4hr clinic visit, then driving 4 hrs back home.

The next 3 nights, stayed up later than usual, cleaned a lot more than usual, and my fingers were not curled when I woke up.

I promise shorter updates from now on,
cheers!
-b
 

BLPhill

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Hi Brenda

Great name for the pill pushers. Is that all you take is 5 mg at bedtime? I guess the baclofen beauties club it is.
 

joelc

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Everyone, please pay close attention to your progression as there are a lot of PALS that notice an increase in their rate of progression after starting on baclofen.
 

trying to stay positive

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Rose

My hubby will get a neck cramp sometimes when I am shaving him & tilt his head back, but his muscle strength from his neck up is still good. Please, don't borrow trouble. I don't know about you, but I have more than enough as it is! My opinion? You will have a strong neck for a long time to come!
 

BLPhill

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Hi joel

Have you ever taken baclofen? If so, did you have an increase in progression? Is there anyone reading who feels that baclofen has sped up the rate of progression? Maybe I don't want to take it. What about you al, what do you think about it?
 
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