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73dallen

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Hi, I am new here and must say I respect those dealing with ALS....some of the toughest people on earth. I am not looking create an overblown post here, but I just got refered to a neuro and kinda looking for what to expect...reactions to my symptoms.

My blood work has shown an elevated CPK for past three years. Always been a weight lifter till this year and today’s test was 305...so consistently in low 300’s. My LDH was also elevated (360) for second time in 3 years. No lyme disease and no signs of autoimmune disease.

For the past 4 years I have always complained about morning stiffness, but nothing too abnormal.

Here’s where it’s not adding up. 3 weeks ago I had an ER visit for what was thought to be atery issues in neck - had a severe pulsing pain at base of skull. CT with dye showed all clear, went home with muscle relaxers. That weekend I had started a very labor intensive project of clearing trees on my property. This work conintued for a week. By the end of the project my right hand had severe pains, hurt to apply pressure...so I could push and pull but couldn’t grab things. Over the next week the pain shifted to my forearm, felt like icy hot under my skin, the next morning it was more like a mild cramp. By this past friday the pain copied itself into my left forearm, which the right seems slightly better now. But at the same time cramps started all over (arms, shoulders, calves) with heavy fatigued quads, not extremely hard cramps...just enough to know they are there.

I can’t tell any weakness other than from fatigue. No atrophy has been noted. I have noticed some twitching, but minor stuff. My PCP is confused b/c blood work doesn’t explain any reason for prolonged cramps....which she believes to be abnormal.

I of course have made the mistake of playing dr google...hence why I am here. I am just wondering is it common to begin with cramps and fatigue most everywhere (over 3 weeks) without some more generalized specific problem/failure. Will my nuero be dismissive and say come back when you fail. I am trying to point myself away from ALS and believe my timeline and lack of failure should do that. Sound reasonable?
 

Atsugi

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No ALS.

You're living a perfectly normal life and from what you've posted, your body seems totally healthy.

Personally, I think the cramping will relax with some Gatorade. But I am not a doctor.

Follow your doctor's advice. But there is NO reason whatsoever for you to be thinking about ALS.

For details, read the IMPORTANT post stuck to the top of this forum called READ BEFORE POSTING.
 

73dallen

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Thanks Mike, the sticky nearly kept me from posting. I recognize I dont fit those guidelines, just have seen some recent posts that seems to challenge the pain vs failing rule, so was wondering...I was expecting/hoping that I am crazy to think it.

I respect your opinion. God bless and thanks for taking the time to respond.
 

73dallen

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I would like to report that things have improved, but they have not. I tried to mow the lawn yesterday and my arms just felt horrible afterward with cramping in my thumb. Both quads are exhausted and overall I just feel clumsy as heck. So I fit into the weakness category with blood work that shows muscle degeneration. When sleepying I feel that weird jerk or cramp throughout my body.

It is these reminders that something is going on that is keeping me worried. I havent seen my nuero yet and won’t post here again until more tests have been run. I beleive God can do miracles, resting on faith.
 

KarenNWendyn

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Are you seeing a neurologist? Until you do, you’re just guessing, and your fears are getting the better of you.

There is an entire category of conditions known as “myopathy” which can cause muscle inflammation, cramps, weakness, elevated muscle enzymes (including CPK), These conditions affect the muscles directly, not the nerves, and many are treatable. Again, evaluation by a neurologist (hopefully one specializing in neuromuscular disorders) can help sort this out).

Three to four years of symptoms without failure of a specific muscle region points strongly away from ALS.
 

codyclan

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Clinical weakness is different from feeling weak. If your doc didn't note clinical weakness, then I wouldn't worry about ALS. It does not sound like ALS. ALS is about failing not feeling. Feeling weak after mowing the lawn does not mean that you are experiencing weakness associated with ALS. It is difficult to explain to someone who is not experiencing true ALS weakness. My husband never 'felt' weak, he just couldn't do a specific task, like button his shirt. Continue to work with your doc to figure out what's going on but it still doesn't sound like ALS.
Best wishes,
Tracy
 

73dallen

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Thanks Karen. I am holding onto faith. I have had muscle soreness for a while, been a weightlifter for years. The symptoms as of late just started, 4 weeks of no improvement are strating to scare me.
 

73dallen

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Thought I would give an update for those that have fallen down this fear hole like me. I had my EMG yesterday, nothing was abnormal...Dr. said to get ALS out of mind. I have read too many stories online that you could just insert my name. I still have painful cramps, occasionally twitches, tightness, brisk reflexes, blah blah...but no real weakness to speak of, no atrophy, tripping, toungue issues, etc. Fear consumed me for the past three weeks, the anxiety caused many more problems and the ones I already had gotten worse.

I still have issues, but am letting the pro’s handle it from here own out. I may be back in for another EMG one day if things don’t improve, but as of today I am done with playing internet doctor. Having faith and letting go is the only way to deal with this fear.

I pray for all those suffering from this disease.
 

lgelb

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"Fallen down this fear hole" is a very apt description, dallen. Appreciate your updating us -- I am sure it will help people who never post.

Since you have symptoms but a neurological cause has been ruled out, this is the point where you might consider things that could help you improve -- reconsidering your diet/lifting regimen, which usually needs to be tweaked as the years roll by, hydration, stress, sleep (temperature, bed, pillow, mattress, positioning), stretches that balance out lifts, etc.

Massage, hot tub, exercise bands, Pilates, tai chi, barre and lifting with lighter weights in ways that allow you to exercise different muscles could all be on the table, just to name a few. Electrolyte levels in blood can be misleading, so trying a little magnesium lotion on any pesky muscles (apart from the tongue, of course) is another thought.

Best,
Laurie
 

73dallen

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Well I've been letting the pro's handle it and am about out of runway. Full work-up with my Rheumatologists found nothing. Follow-up with Neurologist confirmed very brisk reflexes, but he thinks I just need more sleep and referred me to a sleep study...which I'm still waiting on a consult. I wasn't twitching while in his office, so he said they didn't exist. He said b/c of the clean EMG there's no chance.

My symptoms have doubled since I last posted. Now starting to see more weakness in left arm and in my right leg. Twitches seem to be focused on areas where my spasms are worse. I tried to work in the yard this weekend and just couldn't do anything without making my entire body feel like I had just worked out for two hours. I've called my neurologist asking for meds to help with the pain and he won't do anything until I've had a sleep study.

I've read enough posts on this site to know what's possible, but my question now is how likely are my symptoms a result of sleep apnea? Just trying curious if others have seen it play out this way?
 

lgelb

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I'll stand pat on my last set of recommendations -- "letting the pros handle it" is fine for diagnosis -- and a sleep study sounds like a good thought -- but isn't always enough to actually feel better.

There is really no point in speculating how much could be due to sleep apnea unless/until you are shown to have it, in which case definitive PAP therapy could have a significant impact on your symptoms. But as any of us who have lived short on sleep can testify, the lack of quantity/quality is no small thing.
 
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