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.
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.