Old 10-15-2008, 11:26 AM #1 (permalink)
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Exclamation 31 year old, could this be bulbar- update #4

Hello Everyone. I wanted to give an update in regards to my situation for anyone who is following my situation. I had an appointment with OSU neuromuscular unit and with the Rheumatology dept last week.

First my neuromuscular appt (this is my second opinion neurologist visit, the first said I have benign fasculations and basically ignored my other symptoms)- They did all of the usual tests…squeeze my fingers, push my hand..that stuff. The Dr. didn’t see anything abnormal there. We went over all of my symptoms. I did not mention or ask about ALS, I want to wait to see if he brings it up. He did say my blood work showed high CK levels. He said he wants to take a wait and see approach with this. I have a second appointment at the end of December.


Now- Rheumatologist- He did a ton of blood tests, probably 30. ALL came back normal EXCEPT…elevated CK level. I had this done in Early Sept, it was normal at 137. It is now high at 262. I asked the rheumatologist what it meant and his explanation was that CK levels become elevated when a muscles cells are dying or injured and releasing this into the blood stream. I then asked him if there was a relation to ALS and he said it is a possibility but there are other things that could cause this as well. Follow up here is in 4 months

I am still having neck pain, I have a constant tickly in my throat and cough a lot (for past 3 months), any strenuous physical activity causes my muscles to be so sore, especially my neck. I still have tongue impressions, I still have muscle twitching, I still have less every than usual, I still have dry eyes (especially left), and I still have to constantly clear phlegm from my throat.

When I did some internet research on CK levels and ALS I found that most say that in 50-70% of cases people with ALS present with high CK levels? My question is to people with a possible or firm diagnosis, did you or do you have elevated CK? Please give me feedback on this.

Thanks everyone, next update will be in December or sooner if anything dramatically changes.



CB in Ohio
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Old 10-15-2008, 11:52 AM #2 (permalink)
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I have two questions as well regarding your post...
1. A general question to anyone, you stated, "any strenuous activity causes my muscles to be so sore".
Is this normal with ALS? Are effected muscles more sore after exercise?
2. Another general question to anyone. Whether it be bulbar or limb onset is the opposite effected this rapidly? (i.e. would you have muscles that were effected from bulbar onset, or vice versa?)

Thanks.
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Old 10-15-2008, 01:00 PM #3 (permalink)
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CB ... My CK levels were one or two points above "normal," which they attributed to the fact that I was taking statins, which raise CK levels. They were nothing like your elevation.

Aobrien ... no, I did not have achy muscles before the ALS symptoms began (or after). Three times a week, I did treadmill, stationery bike, arm "bicycle" (whatever it's called), and once a week I did advanced Pilates. I never experienced any muscle aches.

I continued my exercise program through my first year of bulbar symptoms, but was able to do less and less. I quit the gym/treadmill, etc. six months ago. Am still doing a modified Pilates, but cannot do the normal number of reps and only use the lightest springs (or no springs on arm exercises -- just range of motion). Have never experienced achy muscles.

Sorry, I don't understand your second question. I have bulbar onset (2 1/2 years), and my muscle weakness is primarily in my tongue, and affects my speech. I also have stiff facial muscles on one side, and droopy muscles on the other side of my face and swallowing problems. Weakness is now slowly but steadily spreading into my limbs (hands and arms). My left leg shows very minor weakness, my right is still OK. My awareness of limb involvement started about 2 years after bulbar started.

Hope that helps.
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Old 10-15-2008, 02:18 PM #4 (permalink)
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Hey Beth, sorry to hear that this is spreading. I will certainly keep you in my thoughts. Do you have any soreness or aching at all...even in your neck?

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Old 10-15-2008, 02:30 PM #5 (permalink)
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My CK was elevated but not until long after the weakness was noticed. Normal for me was 200 and I was at 1050. Yours doesn't sound like much in comparison. Those numbers were a couple of years after diagnosed.

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Old 10-15-2008, 02:38 PM #6 (permalink)
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Hey CB

CK levels are elevated in people who work-out (I remember you saying you work-out), especially those who lift weights and shortly (hours to days) after they're done lifting weights. Mine have always been slightly elevated when I've had blood work done (for years and years and years), just like yours . . . and I was a powerlifter/body builder before I was hit with my neuropathy.

Your CK levels are not that high at all; CK levels can be in the thousands. I wouldn't let it worry you too much.

Your neuro should have actually told you to take it easy prior to your blood work if he/she knew they were going to be measuring your CK levels.

Hang in there.
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Old 10-15-2008, 02:40 PM #7 (permalink)
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OK, you got me. I do have aching muscles in the back of my neck and shoulders, which I assume is a) too much time on the computer and b) probably weakening muscles holding up my head. I treat it by doing the "corpse pose" (flat on my back on the floor, arms turned up) for 20 minutes or so in the afternoon.

Also have had lower back aches recently, but that's a lifetime problem, and I think trying to hold my husband up while he walks is part of it. I'm doing some yoga spinal flexes and it's getting better.

My philosophy: If yoga doesn't kill you, it'll cure you.
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Old 10-15-2008, 02:47 PM #8 (permalink)
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Wright- that certainly makes me feel better about this. I was wondering how high 262 really is because I had seen on some other posts that people can have above 2,000. Is a increase from 130's to 260's possible by just working out? When I go to get my next test, would it be better to maybe not do any strenuous activity for a week before? They didn’t advise me on anything like that and they also didn’t tell me what you just did which would of been nice. I did work out on a Saturday and my test was on the following Wednesday. Hopefully that is what caused it to be higher.



Thanks Wright!



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Old 10-15-2008, 03:01 PM #9 (permalink)
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Going from 130 to 260 could certainly be due to working-out. Like I said, 260 isn't really that high.

Yes, take it easy before your next blood work is done.
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Old 10-15-2008, 07:18 PM #10 (permalink)
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Thanks again Wright.
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Old 10-16-2008, 11:09 AM #11 (permalink)
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Quote:
Originally Posted by cb1977 View Post
hello Everyone. I Wanted To Give An Update In Regards To My Situation For Anyone Who Is Following My Situation. I Had An Appointment With Osu Neuromuscular Unit And With The Rheumatology Dept Last Week.

First My Neuromuscular Appt (this Is My Second Opinion Neurologist Visit, The First Said I Have Benign Fasculations And Basically Ignored My Other Symptoms)- They Did All Of The Usual Tests…squeeze My Fingers, Push My Hand..that Stuff. The Dr. Didn’t See Anything Abnormal There. We Went Over All Of My Symptoms. I Did Not Mention Or Ask About Als, I Want To Wait To See If He Brings It Up. He Did Say My Blood Work Showed High Ck Levels. He Said He Wants To Take A Wait And See Approach With This. I Have A Second Appointment At The End Of December.


Now- Rheumatologist- He Did A Ton Of Blood Tests, Probably 30. All Came Back Normal Except…elevated Ck Level. I Had This Done In Early Sept, It Was Normal At 137. It Is Now High At 262. I Asked The Rheumatologist What It Meant And His Explanation Was That Ck Levels Become Elevated When A Muscles Cells Are Dying Or Injured And Releasing This Into The Blood Stream. I Then Asked Him If There Was A Relation To Als And He Said It Is A Possibility But There Are Other Things That Could Cause This As Well. Follow Up Here Is In 4 Months

I Am Still Having Neck Pain, I Have A Constant Tickly In My Throat And Cough A Lot (for Past 3 Months), Any Strenuous Physical Activity Causes My Muscles To Be So Sore, Especially My Neck. I Still Have Tongue Impressions, I Still Have Muscle Twitching, I Still Have Less Every Than Usual, I Still Have Dry Eyes (especially Left), And I Still Have To Constantly Clear Phlegm From My Throat.

When I Did Some Internet Research On Ck Levels And Als I Found That Most Say That In 50-70% Of Cases People With Als Present With High Ck Levels? my Question Is To People With A Possible Or Firm Diagnosis, Did You Or Do You Have Elevated Ck? Please Give Me Feedback On This.

Thanks Everyone, Next Update Will Be In December Or Sooner If Anything Dramatically Changes.



Cb In Ohio
I Have Als 9 Years Cpk 137 And I Have Alot Of Muscle Loss
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Old 10-16-2008, 11:51 AM #12 (permalink)
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CPK of 137 is pretty normal. Thanks Patricia.
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