doctor visit update

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boxer22

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Hello agian everyone,
Well i was able to get in with my neorlogist this morning instead of waiting until the 12 . I told him all about the twiches and told him i have not noticed any weekness or wasting just the twiches. He gave me a full exam and said that my streath looked fine but i was brisk which could be normal he said but wanted to do an emg, so thursday i go for one. He also did a cpk, anyone know what that is and why it is done? Anyway the one thing that scared me was that on my paper he wrote diffuse weakness? He didnt tell me that, in fact he said my streath looked good. Anyone know what diffuse weakness is? And why he wrote it but didnt tell me? Only thing he said to me is that i was brisk. In fact i would swear he said in his office to me that there was no weaknes but yet why would he write that. I am very confussed. I need to know what the diffrence between diffuse weekness and reguarly weakness is? Thanks
Ashley
 

ltr

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Hi Ashley - I am really glad you got in to see the doc earlier. Sounds like he is doing the EMG because of your brisk reflexes. Don't be alarmed, though, brisk reflexes can be due to a number of things, even anxiety. As far as the diffuse weakness, that pretty much means "all over weakness", not limited to one spot. Maybe he wrote that as your diagnosis to justify the EMG? I'm not sure why he would do that. CPK (creatine phosphokinase) levels are used to measure any muscle damage. Certain illnesses can cause muscle damage and enzymes from that damage are released into your blood system. They even use this test on a person who complains of chest pain to check for heart attack because even that muscle is released. These tests will give you the answers I think you are looking for and I wish you luck. Leslie
 

boxer22

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ltr said:
Hi Ashley - I am really glad you got in to see the doc earlier. Sounds like he is doing the EMG because of your brisk reflexes. Don't be alarmed, though, brisk reflexes can be due to a number of things, even anxiety. As far as the diffuse weakness, that pretty much means "all over weakness", not limited to one spot. Maybe he wrote that as your diagnosis to justify the EMG? I'm not sure why he would do that. CPK (creatine phosphokinase) levels are used to measure any muscle damage. Certain illnesses can cause muscle damage and enzymes from that damage are released into your blood system. They even use this test on a person who complains of chest pain to check for heart attack because even that muscle is released. These tests will give you the answers I think you are looking for and I wish you luck. Leslie


Thank you so much leslie. I guess i am just really worried. I dont really feel week but you know when they are doing the exam they tell you to fan out your fingers and then say dont let me push them back in? Well he did that to me and i think that was the only time i might have been weaker on one side. My left hand was easier to close then my right ? Is that really important? He did not say it was a lot weaker but i saw and could tell. I am right handed so maybe that means its normal to be stronger on that said? I dont know. If i had als would my cpk be normal? Thanks
Ashley
 

ltr

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CPK is usually normal in als. But it used as a marker for a lot of other illnesses. I also think it is normal to be stronger on one side, but maybe your doc noticed it and wants to be thorough. It's good he is being thorough! Many of us on the forum wish our docs would check things so quickly. I really think you will be okay and get some answers to what is going on. The EMG is very important for you to have. Take care. Leslie
 

Jamiet

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Boxer,

How old are you? Is it 22? If so, you've really got statistics on your side.....

1 /5 of the population has brisk reflexes. Do you know what your rating was, 1/5, 2/5, 3/5, 4/5 and 5/5. 2/5 is normal.

I started at 3/5, now 5/5.

The EMG will tell if there is trouble, esp. if there is weakness.

thx,

jamie
 

boxer22

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Jamiet said:
Boxer,

How old are you? Is it 22? If so, you've really got statistics on your side.....

1 /5 of the population has brisk reflexes. Do you know what your rating was, 1/5, 2/5, 3/5, 4/5 and 5/5. 2/5 is normal.

I started at 3/5, now 5/5.

The EMG will tell if there is trouble, esp. if there is weakness.

thx,

jamie


Hi jamie,
I am 24. Yes statistics are on my side, but of course i am still worried. Its in my nature to always think the worst, i know that is very bad for me but i cant really help it. He never gave me a # regarding my brisk reflexes, just that they were brisk and could just be normal for me. I am more worried about the so called diffuse weekness. The twiches really scare me to, they are just so prominent, frequent, widespread, and long. Thats what makes me think they are not benign. Thanks
Ashley
 

Jamiet

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Ashley,

Some anti-anxity meds should help you. I take wellbutrin, which made me a different person, helped 1000% and i wish i had discovered that 5 years ago.

All you can really do now, is wait. Only time will tell. The waiting game is tough, to say the least. Just try to focus on your kids and family, every second, is now precious, wether you have ALS or not.

On the EMG, make sure they test your tongue, and at least 3 limbs and at least 4 sticks in each limb.....the more sticks, the better chance of ruling out or in problems.

Make a list, before you get to their office, write your questions down.

take care, you'll be ok......hang in there.

rgds,

jamie
 

Al

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Hi guys. In regards to CK levels. For a normal? 57 year old male (me) CK is generally around 200. Mine is around 1100 because of my muscles atrophying. My Neuro said that 1700 or more is not unheard of in ALS patients. If mine had been higher at that time he would have ordered a muscle biopsy to see what was going on. This was back in about May of last year. Not sure what my level is now. Also blood glucose levels are stated differently in the US than Canada so I am not sure if my (cdn) numbers would be the same as yours.
AL.
 

BWk

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ck

From what I've heard it is usually [CK levels] high in als persons, but now I'am not sure if that is correct. I had mine checked in May and it was only '55' [26 to 186 'normal range'] and I am 58 yrs. old. And when I first had symptoms in '05' it was always normal when checked. Does anyone know for sure about ck levels and its relationship to als and mnd and if it is an accurate indicator in als diagnosis. Barry
 

ltr

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When I did research, I found that it was either normal or mildly high in als patient's. But, like everything else, this isn't necessarily true in all PALS! Leslie
 

monkey

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I'm not a ALS expert but this may be due to the fact that in early onset of the disease CK levels remain normal because the disease has yet to start atrophying of the muscles? Once the disease has progressed the levels should begin to rise... Just a thought... prob not right but you never know!
 

MtPockets

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CK levels average 1600 now for me

When my muscles first starting spasms really bad I was admitted to the hospital with a ck level of 3000. After 5-6 days of flushing with IV's it was down to around 600. As time progressed over the next 3 years I now run an average of about 1600 most of the time.
The doctors tried to explain to me what was happening in laymans terms. He said the muscles as they jumped rubbed against the tissue and some of the muscle tissue went into solution into the blood stream. This amount of muscle tissue in the blood stream was what the ck was measuring. So the more spasms the higher levels of ck.
I hope this helps.

God Bless
Capt AL
 
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