Old 03-06-2009, 10:44 AM #1 (permalink)
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Hi,

This is my first time posting on this forum after a year of reading posts. First I want to thank everone on this site for the wealth of information provided. I see the courage of people dealing with incredibly difficult situations and I'm grateful for you. You're truly amazing, wonderful, caring people.

Im looking for a little guidance as to what I have experienced...not a Diagnosis, just ideas as to what I should pursue next. I've been on quite an emotional rollercoaster. It's my first post sorry...somewhat lengthy. I'll try to keep this short-

I'm a 32 year old male and have been very active into weight lifting for about 7 years. I haven't worked out much at all in the last year.

In February of 2008 I started experiencing fasciculations. I've had them in virtually every muscle of my body from head to toe. They were constant in the first few months and have since slowed down a little. I still get them in random spots multiple times a week. They don't start in one muscle and stay. They "hop" around. I also get a feeling in my legs on occasion where they feel like I worked out with them the day before when I did not. They feel weak, tight, tired, and slightly sore. This comes and goes it's not every day or every week for that matter. There have been days when my legs felt downright wobbly almost as if they wanted to give out (they never quite have though). I also get a fatigued feeling in my neck and shoulders on occasion, this comes and goes as well. It's the same feeling as in my legs. I have also had excersise intolerance for a few months now. It's odd, after I workout, which is not often any more, my muscles are no more sore than they used to be...but I'll take a break for two weeks and wake up one day and boom my legs feel very weak. My jaw muscles even get tired from chewing food sometimes.

About 5 months after the fascicualtions started I went to see a Neuro who specializes in NMD. He examined me and declared me healthy. No atrophy and no clinical weakness...said to call him for follow up if something changes. My Fascis got worse so I went back. He scheduled a blood workup, Nerve conduction study, and an EMG (he performed the NCS and EMG himself). Everything came back perfectly normal. This was nearly 6 months after onset of Symptoms. He then had me do an MRI of the Brain as well as MRI's of the Cervical, Thoracic, and Lumbar Spine. Once again everything came back perfectly normal.

3 weeks ago I went in and had my blood taken for CPK levels. I had the test repeated last week. Both test came back with slightly elevated CPK. Sorry I don't know what the level was Neuro just said "slightly" elevated.

Throughout all of this my Neuro has stated that I do not have ALS.

I have a follow up with him to discuss next steps on March 23rd.

Based on my symptoms is there anything else that I should be checking for that might have similar symptoms to ALS.

I don't think my symptoms are typical of ALS but I know there is no such thing as a typical case of ALS. Should I still be concerned about this?

Are there any other tests I should ask about?

I really aprecaite anyone who might be able to take the time and reply.

Thanks,


Shim
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Old 03-06-2009, 10:56 AM #2 (permalink)
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Could be a myopathy, among a ton of other things, which do not seem to be ALS.
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Old 03-06-2009, 11:21 AM #3 (permalink)
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Obviously no one here can diagnose you. You have been looking long enough to know that.

Sorry you have to be here but it sounds like you are level-headed about it

I think an elevated cpk level would point away from ALS. Keep your head on straight and keep pursuing answers. We all know it is frustrating so don't get discouraged. It takes time.
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Old 03-06-2009, 11:39 AM #4 (permalink)
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Benign Fasciculations Syndrome. There is a link to a support forum for it in a sticky on this forum. Twitches are a minor, minor part of ALS ... not even a part of the diagnosis ... but major, major symptom (obviously) of BFS.
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Old 03-06-2009, 11:59 AM #5 (permalink)
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Thanks so much for your responses. Your guidance is very much appreciated.
I've read in some places that PALS can have elevated CPK so I thought I would mention that incase it was applicable.
I like to think I'm being level headed but I'm confused. I should also state that this all started right after a bad intestinal virus (they think that's what it was). It also started within 3 weeks of having a tetanus shot...not sure if any of those things might have any bearing on my situation.

One other thing that might be of note is that I was a very heavy anabolic steroid user many years ago (Stupid...I know). I hvaen't used them in quite some time but maybe that has something to do with this. I'm not sure if anyone else has used these in the past and might have had a negative experience long after?

Again, not looking for a DX...just direction what I might look for/ask the Doc about next.


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Old 03-06-2009, 12:15 PM #6 (permalink)
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Shim

Not one thing you mentioned would lead anyone to believe you have ALS. All of your tests have been clean and most importantly, you have been told by a neuro that you don't have ALS. Your fears of ALS should have ended, right then and there.

That sure sounds like BFS to me and certainly could have been triggered by the intestinal virus you had . . . a post-viral autoimmune condition . . . and it is simply taking time to resolve. Sometimes autoimmune conditions, especially those that are benign in nature, escape detection in the blood work.

As far as steroids causing this: anything is possible.

Bottom line: what you have doesn't sound progressive and will more than likely resolve. When that will happen is anyone's guess.

Take care and relax. It sounds like you're in good hands with your neuro. Let your docs do their job and stop trying to do it for them.
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Old 03-06-2009, 01:07 PM #7 (permalink)
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Thanks, Wright. Good Advice. I really appreciate it. I hate to seem like a bother especially to people dealing with or potentially dealing with larger issues than my own but this has been helpful.

I wish the best for all of you.

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Old 03-06-2009, 02:03 PM #8 (permalink)
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Shim,

CPK can be elevated in many situations, included BFS. Best of luck getting to the bottom of what is ailing you.

Robert
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Old 03-06-2009, 03:02 PM #9 (permalink)
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Big shim~

all my sx started after a BAD intestinal and severe colon infection and I had the flu shot...and pregnancy thrown in there..I can relate. Do you feel like you are getting better, the same, or worse? Just prepared, you wont get any real answers on the 23rd. It can be a long haul........and the only thing that will tell whatever this is, will be time.


Take care!
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Old 03-06-2009, 05:12 PM #10 (permalink)
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Robert, I'll keep a positive state of mind and hope this is benign. I hope the best for you as well.

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Old 03-06-2009, 05:19 PM #11 (permalink)
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Hi Awieleba,

I feel like it is getting better each time an "episode" occurs, but each "episode" seems like it is worse than the previous one and that it last just a little longer. I can go 3-4 weeks without any SX other than Fasics, but then it hits me again and is worse than the last time. Do you feel the same?

I won't get my hopes up that I will know what is going on after my next appt. I think he is going to refer me to Washington University in St.Louis. He has mentioned that before due to my case being particularly difficult for a community neuro to diagnose.

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Old 03-06-2009, 05:47 PM #12 (permalink)
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I should clarify My last statement. I feel like it is getting better between each episode but then an new epsiode occurs and it seems like it is worse than the previous. Sorry for any confusion.

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Old 03-06-2009, 06:44 PM #13 (permalink)
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no confusion, I knew what you ment. I think it a good idea to be referred out. Yes, I do have episodes. over last summer my legs felt like jello, thought I would fall or give out at the pool, but that has gotten better. They are still weaker than I would like but no jello feeling anymore. Just weakness around knee area. Same with arms, had a hard time holding up clothes while shopping (something women do) and I think that has gotten better, not as much shaking. I do feel my sx wax and wane. Still dont know what it is, but als was ruled out for now.....I think/hope some funky autoimmune/myopthy/I dont care anymore thing.......

Good luck!
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Old 03-06-2009, 08:46 PM #14 (permalink)
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Just a random thought here but you're not the first heavy bodybuilder showing up here with symptoms like yours. I wonder if it has something to do with stressing the muscles, organs with heavy weights and reps and then you quit and everything goes soft and crappy. Seems like we have a lot of young guys that used to do weights.

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Old 03-06-2009, 09:09 PM #15 (permalink)
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Awieleba,

That sounds very familair. The area around my knees is particularly susceptable to weak feelings and fascisulation. Also, the feeling in the shoulders sounds similar. My shoulders get exhausted from holding up and talking on my cell phone for 5 minutes. Fasciculation has been worrisome but not as much as the feeling that my musckes are tired and weak. Thanks for sharing with me. I have also been "ruled out" for ALS at this time..but I still have concern as I don't know what is going on and it is scary.

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