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Shaun C

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This is my first post. I have been reading the forum for a little less then a week, reading different posts and the stickys. I have read all the posts from people believing somethings up, and didn't want to become a "what does this sound like...", but here I am.

I am a 34 year old male. I have had achy knees and ( Rheumatologist just saw me i middle of post, more on that in a few.) and sore legs for years, from years of playing baseball. I have played up until this summer. I was playing softball on Monday and finished the game in total pain. My hammys and quads were super tight. My knees cracking a mile a minute. I aslo working in law enfoecement. The next day, Tuesday , i was involved in a very brief foot pursuit and slight struggle, nothing tough. I started getting twitching, which I havent had in years. Twitching lead to internet lookup, and I'm sure everybody knows where the story goes from there.

Went to the ER and my CK was 2600. I was very insistant on my leg twitches being a huge issue. The ER doc ran what I would guess is a basic battery of tests, ie pull hands, flex toes, puch toes, etc. He said all looks good. I was admitted to Hospital to try to lower CK levels. During my stay, twitchin became unreal. Constant and in a few places at this point including back of legs, calves, arms, and trunk. I really freaked. I have had zero anxiety issues before the dreaded internet lookup I did. At this point I insisted on seeing a neuro. She came in and preformed a similar battery of test which included a hammer and some scrapper for the bottom of my foot. She gave me the "all's good" and left. 2 minutes later she returns and says she wants to schedule a test to see whats going on with the twitching. I freaked. My attending assured me it was just to follow up and I was dismissed with a CK of 822the on Friday.

Friday night I have trouble getting comfortable, some twitching issues are present. I hop on the net and it's back to freak out city. Saturday morning I wake up don't feel I can swallow after reading about bulbar. Even mushy cheerios won't go down smooth. I have had zero issues like this before, including my time in the hospital. Saturday morning I drive 3 1/2 hrs to Hershey. Get there thinking about ALS the whole time while driving. Walk the park a good bitabout 3 miles of walking, including carrying to kids on and off and pushing a stroller. Leaving the park I feel shot. I know i had dozens of viles of blood drawn so I should be weak. I know I drove a long time so I should be uncomfortable. I just couldn't shake the readings from my mind. The srive home is much of the same. My mind wandering where it shouldn't. I get home with back home after the 4 hr drive and my back is killing me. I decide to go to the hospital because I was nervous thatthe CK leves may have spiked, endarging my kidneys. I get admitted with a 920 CK level.of met withthe Rheumatoligist and he does the battery of tests and says I'm not showing any neuro issues. I met with a shrink and he insists the anxiety is making the bulbar issues present.
So here are a few questions correct
1) From my understanding strength will not return to muscles affected my als. It doesnt matter id phys therapy was issued in the past. Am I correct?
2)CK level is really not an indicator in inital ALS symptoms?
3) The activities I described would have been impossible, not tiresome due to my hospital stay. Is that correct?
4) Even if I have a lisp on words with "s", any speech deficiency would be more pronounced?
5)From never showing any problems swallowing, it would be a huge stretch to assume my current swallowing issues are anything but anxiety. Correct?
6)Any brief biting of the inside of my cheeks from months/years ago which have not been repeated shouldn't really be worried about?
7) any breathing exercises i do significantly, if not totally stop my twitching.A good sign?

Sorry for the long post, but the next post I want to post is a thank you for your imput and not drag this pist on. From the bottom of my heart, with all sincerely, God bless the people that take time to answer questions here. Weather diagnosed, a care giver, or a knowledgeable person, the fact you take time for this is truly amazingly. Pretty sure my symptoms are not much to worry about currently, this site has truly changed my life by reading of the bravery and love that is present here. I honsetly wish I could be the type of selfless person you all are.
 
1) yes
2) CK level is only elevated when there is marked damage to the muscles as far as I know. In ALS, they say that it can be either normal or a bit elevated. 2600 seems way too high, especially if you were in the beginning stages of ALS. It sounds like you could have an acute condition, but if your doctors aren't concerned, then perhaps not?
3)If the neuro says everything looks good, then everything looks good. Anxiety, getting blood drawn, and being uncomfortable are all much more likely causes of tiredness than ALS in your situation.
4)It sounds like your speech problems started after you read about bulbar. Swallowing problems usually don't occur in bulbar ALS until after there is a marked speech disability. If other people aren't asking you why you're talking weird, then you've got nothing to worry about. Listen to your shrink.
5)yes
6)that's not a symptom of ALS. You definitely shouldn't be worrying about things that happened months or years ago, as they pretty much have no significance in ALS if they have not returned and are not progressive.
7) No one knows what causes non-ALS twitching. There are no specific characteristics of ALS twitching aside from the fact that ALS twitching will increase as your condition deteriorates until the muscle/whatever area is completely dead. I've noticed that the amount I twitch is heavily dependent on my level of anxiety, and I don't have ALS. There is a condition called BFS, which is just harmless twitching for pretty much no reason. It is much more common than ALS. Deep breathing exercises help with anxiety, keeping your mind off your symptoms and not freaking out should help you out as well.
 
Shaun,
1) Stay off the inter web! Al Gore be damned!
2) Breathe!
3) Do whatever follow up tests the neuro schedules and then go back to the park and enjoy a stroll with the kids.

My crystal ball is broken, so I can't say you do or do not have any disease, least of all ALS. That said, if you're prone to soreness and aches from years of athletics (hell, if you hate it now, wait til you hit 50!) then for the time being consider your pains to be just that.

WRT to the elevated CK levels... did you ask them which of the three components were out of "normal" range?

My non-medically trained brain would answer your questions as follows:
1) Muscles die with ALS so, no, strength will not return.
2) CK levels are increased in about 70% of ALS patients but those levels don't mean you have it. EMG, nerve conduction and other tests are better indicators of neuromuscular weakness.
3) Not sure I understand the question, but being tired is a symptom of a host of things.... don't stretch to make it fit ALS.
4) I'm bulbar so my speech sucks... I wish it were limited to the letter "s"!
5) I'd agree with the "shrink" that anxiety is your issue. Try looking at the steps when you go down a flight of stairs... makes you feel like you've never done it before. Thinking about swallowing isn't normal so, as Nike says, 'just do it!' and don't analyze the process.
6) Non-issue.
7) If you're less anxious then, yes, that would be a good sign.

I've been in your shoes, surfed the net and posted here with questions myself. My symptoms were very different from yours, and that's a good thing for you!
Don't dwell on the idea that you may have ALS; it'll keep doing to you what it already has! Again, just do the follow up tests the doctors want and forget about Lou Gehrig... hell, become a Mets fan--- the other 7 need some company!
 
From what I understand about the CK levels, its indicative of muscle damage, so I would keep on your docs about that. Frankly nothing in your post would lead me to think of ALS. Swallowing issues don't just show up, so I would tend to agree that's anxiety, however there may be something else going on. Good luck and cross ALS off your list.
 
Basically same as the rest. Let the docs sort it out. Bulbar symptoms you had were almost certainly anxiety produced.

Initial twitching likely due to high CK levels. Let them sort out the whys....insist on it.
 
My husbands CK levels were off the charts when he first started with symptoms of ALS...... After many months of tests, emg's, etc... It ALS. Slow moving thank god, but his CK levels are lower now so who really knows?
Jennifer
 
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