Advice Please

[pmbenb83]

Hi Peg and Steve,
CK is creatine kinase. My husband's doctor watches his CPK, which is creatine phosphokinase... muscle breaking down and passing in the blood.

Creatine kinase (CK), also known as phosphocreatine kinase or creatine phosphokinase (CPK).


Pam B in Va

 

[Steve100]

Thanks for trying Peg

Pam - thanks for the info - can you tell me if a low count is likely to mean ALS?

Thanks

Steve

 

[Steve100]

Can anyone answer this?

 

[Al]

Hi Steve. I was told that 200 is average for a man my size and age. Mine was 1100 last check. That means that I am losing muscle. The doc told me that 1700 is not uncommon in ALS. Any higher than that he would start looking for the reason.
AL

 

[Steve100]

Hi Al - thanks for the reply. Its weird that my Mother's level was around 200. The neurologist said that that ruled out MMN but didn't mention it was not typical of als either. I had to ask him to do a test for Lymes, which he did finally agree to do, and he's also going to do a bone scan, which I think he should have done before. In an ideal world it would turn out that her spine is pinching a nerve and causing atrophy and weakness. Unfortunately she's having trouble swallowing and talking, so I dont hold out much hope that the diagnosis will change, but it can't hurt to check .

 

[crystalkk]

Hi steve,
MMN just involves just the lower motor nuerons, Not the upper which are
hyper- reflexes, clonus, babinski, etc.
Why is he suggesting a bone scan?

 

[Steve100]

Hi Crystalkk

My Mother has arthritis and is in terrible pain that not even 30mg morphine will fix properly (though it has taken the edge off I think) I'm not sure what he thinks he will find in the scan, I was just glad that he was doing something. I asked him about babinski but I'm not sure he did the test - he just mentioned that speech being affected is a sign of upper motor neuron involvement. Thanks for asking.

 

[pmbenb83]

Hi Steve,
My husband's CPK level has been in the 800 range. I read on one website that the normal range for CPK is 5-200, so 200 sounds like it is in the normal range. Good luck with the bone. Please let us know how you and your mother are doing.

Take care.
Pam B in Va

 

[Steve100]

Hi Pam, hope you are doing well

My Mother's not doing so well at the moment, she's more or less confined to a wheelchair (she can take a few steps if she's supported) and is having more trouble swallowing. I noticed something odd the other day though.........She was writing and although the words slope downwards a bit (due to the weakness). the letters themselves are pretty well formed and perfectly legible. Surely her fine motor skills would be the first to go in MND? Any thoughts on this?

Thanks

Steve

 

[Rachel]

Hi Steve

I think the loss of fine motor skills varies from individual to individual. My mum retained the ability to write neatly & legibly up to the last few days. While she was in the hospice she even painted a name plate and bookmark very beautifully with water colour pencils. The occ therapist commented on how steady her hands were and how much control she had.

Take care

Rachel

 

[Steve100]

Hi Rachel

Thanks for the info, its such a pity - hope you're doing ok, I know yesterday must have been hard to get through.

Take care

Steve

 

[patricia1]

Hi I have Als and my cpk is 200 andd its been like that for years Pat1

 

[Steve100]

Hi Pat, thanks for letting me know. Maybe it's not such a definitive test? The results seem to vary a lot.

Steve

 

[Steve100]

Good luck with the bone. Please let us know how you and your mother are doing.

Take care.
Pam B in Va[/QUOTE]

Hi

The appointment for the bone scan finally came through for tomorrow, but we've had to cancel it. My Mother is in too much pain to be pulled around in hospital again. You have to wait four hours after the injection so its just not feasible. She's had enough I think.

Take Care

Steve