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rightrounds

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I'm a twenty year old white male who has been exceptionally active all his life. I noticed about last December that when I tried to sleep it was as if I could feel all of the blood in my body pumping at once. It never affected me during the day however. Recently this semester I noticed some mild tremors in my forearms, a little stiffness in my hands (some clumsiness typing) and facilations with no particular trend around my body. The only thing so far is to check my blood work which came out showing a very elevated CPK of 900+. I think I may be experiencing some muscle fatigue but it could also be in my head after reading so many of these threads. Truly terrified of the proposition of ALS and am looking for people's personal stories. I have my EMG schedule for next week.
 

rightrounds

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Some additional points to add are that the twitching can be fairly constant now. Please provide some feedback to me.
 

Vincent

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I've gone as high as 6000. My first question is are you taking statins for cholesterol? Statins as well as other meds can cause high cpk levels. Fasciculations are so common as to not be indicative of anything in particular. ALS presents as unexplained CLINICAL WEAKNESS. Not muscle fatigue. Something just will not work, not feel tired, or weak, something will not contract. It's a real leap to go from tired muscles to a terminal disease.
Vincent
 

rightrounds

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So I've noticed a stiffness that has also begun in my left hand and a more consistent and localized cramping that has started to go consistently in my left calf? When I mean that a stiffness has set in on my left hand the dexterity of the hand is seriously compromised. It just doesn't work as well as it should and I consider myself to be a fairly athletic guy - any reason for this other than ALS? Still waiting for an explanation of my EMG on Friday but any thoughts or questions to ask the doctor in the meantime would be very helpful.
 

Atsugi

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Like all humans, I'm not qualified to diagnosis someone over the Internet, nor will I direct your doctor visits. But I can in good conscience say I don't see any reason for you to be inquiring into ALS.

After the neuro visit, see your family GP medical doctor and let her lead the investigation. That's what they're trained for.

Good luck figuring out what this is.
 

rightrounds

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New update - EMG came back clean (or so they told me) and likewise my CK levels were retested and they fell down into a normal spectrum. My symptoms however keep getting worse and both hands are now experiencing difficulties with typing, writing, eating, etc. while all of my other symptoms continue to persist.

I know I don't fit the mold of someone who is going to get diagnosed but if anyone could provide me some insight into what they think this is and why they think that it is advancing so quickly I would be very appreciative. I'm going down to Walter Reed here on March 9th and ultimately they should be able to provide some answers but it might be helpful to guide their direction of research before I get there.

Thank you for your time!
 

ShiftKicker

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I'm not sure people here would be able to help with whatever diagnosis you're heading towards. It's up to the doctors to figure out what direction to search in because they can see you and conduct physical testing. If you try to guide their attempts to diagnose you, something may be missed. Your best bet is to present your symptoms and let them do the work of diagnosis.

While you know your own body and the changes you've experienced, they're the ones with the training and expertise. If you are worried about them missing something, bring a timeline of your symptoms in written form and ask questions about what is, and what is not, on the table.
 

Nikki J

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Normal EMG means they will look elsewhere. You should NOT try to guide their direction. What you need to do is concisely present your symptoms ( a timeline might help) and ask what is wrong rather than push in a certain direction. That is likely to delay a diagnosis not help get to one.

Read the sticky getting a diagnosis

ETA Fiona types faster than I!
 

lgelb

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I'm sure Walter Reed will help shed light. Meanwhile, I would focus on stress, sleep, diet, stretches that elongate the muscles, massage, heat and hydration, which are all under your control within the limits of your school schedule.

Overuse of muscles can definitely lead to CK elevation and could signal an imbalance in how you train (which muscles you work to exhaustion).

Also, if you are using any bodybuilding supplements, protein powders, etc. I would stop and then rebalance with a robust real-food diet.

Best,
Laurie
 

rightrounds

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Compiled EMG Results - Arran Rounds_Page_1.jpg [/ATTACH][/ATTACH][/ATTACH]
Attached are my EMG readings from the the study. I don't know how to tell if there are any abnormalities there or if they are just telling me everything is good because at 20 the likelihood of it actually being something is so minutely low. I don't know if there is anyone on here who has an ability to read EMG's fairly well but if so I would greatly appreciate you taking the look at this and seeing if you see any abnormalities that are glaring.
 

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ShiftKicker

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The report clearly states it's all normal. Doctors never tell people it's normal when there are anomalies. That's a strange assumption to make.

Keep working with whatever specialists you're being referred to, but people here are not able to help you diagnose yourself.
 

rightrounds

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Thank you for the responses everyone - I'm just a very concerned young man who ultimately will get to the bottom of this. When I figure out what is going on I will update this group so as to help future people who may have similar symptoms to that of myself. Ideally no one has to go through the indecision like this because that is what is arguably the worst part of everything - the indeciion.

Lastly I want to say God Bless you all in your struggle against this disease and I solemnly believe that effective treatments are truly right around the corner or are fast approaching like never before. I keep you all in my thoughts in prayers nightly.
 

ShiftKicker

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That's a very kind offer. Yes, please let us know what comes of your diagnostic search. It really helps those who have anxiety to see just how many things their symptoms can mean.
 

rightrounds

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So, they still have no answer for me after my appointment from Walter Reed. EMG presented fasciculations in my legs but normal other than that. My hands type slower than ever, especially on a phone, and my body is always sore.

My toes are always in pain and stiff. Likewise my arms cannot lift that much. Truly my coordination has gone downhill rapidly as well. I played collegiate football in school before but I can hardly catch a ball now.

Constant facilations and cramps cause a lot of my strife. Breathing is also become labored too. I know this is all presenting quickly hence the reason I'm so concerned.

My grandmother passed away of Multiplie Systme Atrophy at 69 but my mom, aunt and sister have no signs or symptoms of any problems. Any clue as to why this is all occuring. My doctors truly have no idea and want to help me. Lyme is negative by the way and NCS is perfectly normal. I just know you guys know a lot and I wanna start getting better or at least understand kings.

My questions are:
-people who get an clean EMG have gone on to develop ALS with certain symptoms. I have a fully clean neuro exam but no answers and daily worsening symptoms. I don't want this obviously but what else could it be? Don't say anxiety please - I was the least anxious person before this. I only saw a doctor because there were actual issues.

Is there a genetic link between MSA and ALS? Might explain the early onset?
 

codyclan

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What did the docs at Walter Reed say? Do they have a diagnostic path forward? Where are they going to focus their diagnostic energies? Did they mention anxiety?

And just an aside, anxiety does not mean that people don't have 'actual' symptoms. We believe that you have symptoms, but to me, it still does not sound like ALS, especially with a clean neuro exam and no evidence on the EMG.
 
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