Do I have ALS....

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ymccree

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I pray for all that suffer from this disease and i'm thankful that you take time to answer others who are in distress. My name is Yusef. I am a 48 year old African American male and I'm hoping you guys can help me with my concerns. April 29th, I went to the ER due to having Rhabdomyolysis. My CK level was at about 1500 and i was treated with IV fluids. over the course of 4 months, i have had repeated visits to the ER for the reoccurrence of the condition. My CK levels have stayed moderately elevated and i have seemed to have lost a lot of muscle mass. Over the course of approximately 4 months, I have lost over 25 lbs. I have not been the weight that I am in 15 years. CBC panel was normal, Liver count all were normal. Here as of late, I'm experiencing fasciculations ( muscle twitching) that originated in my right calf. It has progressively moved to other regions of the body over the course of 3 days ( thighs, lower back, triceps, top of my head. My legs and face constantly burn. it is like I'm on fire. my toes on my left foot feel stiff at times as do my left bicep. I'm walking fine, my strength seems to be ok. No clumsiness, stumbling or falling. As of now, my coordination is intact. I have an appt for an EMG in a few days and I'm terrified. when I googled Fasciculations, ALS appeared and now my anxiety and fear is through the roof. No appetite, not sleeping good. I'm just a hot mess. My question is are Creatinine Kinase (CK) levels elevated at the onset of ALS. I ask this because of the loss of muscle mass that comes with the disorder. Another thing... If I stand up for a long period of time, my legs (thighs) will go numb to the point where if I touch them I cant feel anything. I'm really scared.
 

ShiftKicker

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Hello- please read here to reassure yourself about twitching (which is common): Read Before Posting

I am hoping your EMG will also reassure you. While it's not clear exactly what is causing your symptoms, ALS should not be your concern. I am thinking your doctor has a list of things they'd be looking at based on your clinical exam and reported symptoms- your best bet is to discuss this with them and not consult Dr Google (who is notorious for misdiagnosis). Numbness, spread of twitching to multiple areas in 3 days, and no neurological symptoms all point away from ALS and towards something else.

Please let us know how things go after your emg and when you get the results.

All the best
 

ymccree

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Thank you for the response. I really appreciate it.
 

lgelb

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If you were diagnosed with rhabdo, and it has been an ongoing issue, that pretty much explains your issues. There may have been an EMG ordered for thoroughness, but I would really be looking at medications/drugs/activities that might be associated with the myopathy you have, primary muscle weakness/wasting, which is not at all the same as ALS, a disease of the motor neurons. You might need a different/additional doctor to help you address this.

Best,
Laurie
 

ymccree

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I will be getting my EMG this Thursday. I'm Still feel the twitches, mainly in both calves and ankle areas. every so often, my thighs. Are they generally localized to the particular muscle that is affected? I have lost 25 lbs in the past 5-6 weeks. No sign of atrophy or loss of strength. Should this be a concern? I mentioned elevated CK levels, because I didn't know if it had any significance during the onset of the disorder. Thank you for helping me understand.
 

lgelb

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You're missing the point. Elevated CK is a hallmark of rhabdo. There is no reason to think of ALS on top of that. Twitches are just twitches, when you don't have either weakness or atrophy.

Please don't post again until you have an EMG report.
 

ymccree

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I am really sorry. I just had some concerns. I do understand that elevated CK is the hallmark for rhabdo. I thought Muscle wasting was a part of ALS as well. I didn't know if it was the same and that maybe there was elevated at the onset of the disease.. I have lost weight and its been concern. I didn't know if weight loss occurred at the beginning of the disease. As for the twitching, It is scary. I feel it in my shins, back of my ankles, and calves. Sometimes I feel them in my arms, left hand, and thighs. My anxiety has been through the roof and I have been scared. Again, I am sorry. I meant know harm.
 

ymccree

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I just wanted to say thank you to all of you that read my thread and for the input you were able to give me. I had my EMG this past Thursday and my EMG results came back normal. No nerve or muscle disorders. Thank you all again and God Bless.
 

Bestfriends14

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So glad to hear this and I'm glad you are blessed with a long, healthy life. Thanks for coming back to update.
 
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