Please Please Help

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Really_Scared

New member
Joined
Feb 23, 2023
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2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
OH
I will list what I am experiencing- this is all new and recent:

1. several nights waking up to severe calf, shin, foot, toe thigh cramping, can barely stand until the cramp subsides

2. Daily new cramps down shins and calf muscles

3. Abdominal muscle cramps that freeze and won’t undo

4. Lower back muscle cramp on one side

5. visible fasciculations rippling down thigh, stomach and calf muscles

6. Elevated CPK levels for the first time ever on my lab work

7. A feeling of arm and leg weakness.

8. All electrolytes came back normal

9. Elevated red blood cells, hemocrit, liver enzyme and uric acid

The cpk elevation is the first time in my life, I am so so scared
 
What did your doctor recommend? High uric acid levels can cause gout and lots of pain. With CPK, you need to find out which type of CPK is elevated and your doctor should know this.

You should work with your primary care doctor to figure out what is next. I'm not sure how you found yourself on an ALS support forum except for fasciculations which are common for many conditions and deficiencies.

I would refer you back to your primary care and let her/him direct your next step.

In the meantime, try to reduce stress, increase water intake, lay off food that raises uric acid and eliminate all alcohol. Get some gentle exercise and maybe try meditation.
 
To be honest, I was only directed here when I typed in a search for cramps and high cpk. Every single medical website such as Healthline, Mayo, WebMd immediately list ALS in the first five reasons.

There is a discrepancy on here where people say it’s weakness before cramping/fasciculations but then so many testimonials online say it began with cramps and fasciculations so it is very confusing, especially for people that thought a quick search on muscle cramps directs them to this. It is very worrisome.

With electrolytes normal, vitamin D, magnesium, B12 normal but elevated cpk and red blood cells, high uric acid - it is concerning.
 
Red blood cells and high uric acid have nothing to do with ALS. But high uric acid can give you pain.

Yes, in some cases ALS can start with cramps and fasciculations. But it's much more likely it's something else like cramp fasciculation syndrome.

You really need to go back to your doctor with your concerns. It's impossible for anyone on here to suggest diagnostic differentials but your doctor can.

I would stay away from Google and pursue your symptoms with a medical doctor.
 
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