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What Does Elevated Aldonase Level Indicate?

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Posted on Tue, 28 Oct 2014
Question: Hi doc, just following up on our previous thread. My doctors office called me back on my test results, said I had an elevated aldonase levels, didn't mention any other results. They said to stop exercising for 2 weeks and come back to repeat the test. Calf twitching is still there, seems not as bad and flares up after walking. Calves are slightly stiff, taking clonezapam and cutting back on Wellbutrin. I'm still concerned about ALS, and now separated from my wife since Sunday, it was a long time coming unfortunately. Any insights you can provide would be helpful, feeling down and trying not to get more worked up.
doctor
Answered by Dr. Dariush Saghafi (1 hour later)
Brief Answer:
Message on ALDOLASE received

Detailed Answer:
Good morning once again. I'm glad to hear that it appears the fasciculations are getting a bit better and it seems to be coinciding with your reducing the Wellbutrin, am I right? I also understand that your ALDOLASE levels are elevated. How about CPK?

Truthfully though you can imagine my sitting here typing all this and STILL not writing home about anything, can't you? Sure you can...I'm a doctor-- nothing excites me (not exactly true--- I've got 4 little rugrats you know!).

Please remind me of how much you actually exercise. Is it on a regular basis? Rather heavily? Can I look for you on XXXXXXX Ninja Warrior or something and tell everybody that I've gotten emails from you?

So, if the aldolase is up but the CPK is not then, I don't think that's very tell tale of anything as far as I'm concerned. Now, which doctor's office called you, the neurologist or the Internist with these results? If it was the neurologist's place then, I would have every confidence in their making sure they have ordered an adequate supply of labs looking for evidence of muscle deterioration. If it's the internist's office then, I'd suggest they pass the info. on to the neurologist since he may wish to add a few more markers to be sure they're getting all pertinent labs.

In any event, drink plenty of fluids for the next few weeks. You're trying to wash as much of the CPK and aldolase out of your system. Another way to say that is you don't want to be causing your muscle enzymes to elevate in concentration because of self dehydration (i.e. not enough fluid intake; which we are all guilty of during the day...). Then, your numbers will be falsely elevated.

I wish I had a great fix for your situation on the separation...I guess, as with twitching muscles, tincture of time very well could be the ticket to the future....but what is a mere mortal to do except face each day's challenges with one goal in mind....be the winner of today's nasties that are out to get 'ya...right?

Head up, keep busy, stay focused on moving your life forward, stow the boat if you've got one, saddle up the horse and get out ridin' fences (Eagles-) but just keep movin' forward.

She's going to do the same thing and I think for the next few weeks we gotta just stay on track with PROVING THAT I'M RIGHT! I've got a rep to uphold 'ya know....you best not think about going and catchin' ALS on me....got Las Vegas odds ridin on my predictions....and XXXXXXX told me it was a done line so...don't screw it up! ROFLMBO!

Any way you can get off the Wellbutrin? I have a feeling if you can do that you might just stop the twitchings altogether and that would pretty much stop you for talkin' about any more ALS, right? If it's a mood elevator you feel you really need at this point just ask your provider to give you something that doesn't really cause fascics...problem is any of those types of meds are likely to do the same thing. For some reason your system may be mildly hypersensitized at the terminal muscle contact points of the peripheral nerves...not sure why.

But if we get the twitches stopped, then, we can work on goin' after the damsel in distress....

Dude....you down man?

I don't think I shared my little poem on BFS with you did I? Let me know and I'll include it in the next message....you've still got 2 wishes left, right? I just don't want to inundate you with meaningless stuff if I already sent it to you....but I came up with it the other day when we were talking....who knows maybe I can start a compilation of these things....call it,

"Poems you can put your Diseases to Sleep with!" HAHA!

All right...I'm out...write back and stay focused..

As always, if the words are worthy, would love to hear you shout it on back....if not, hey, put it a lid on it! HA!

Oh, and here is my direct dial URL for the next direct query you wanna ask me:

bit.ly/drsaghafi

just like THAT...believe it or not, it works, no HTTP, no //, no WWW

This query required 37 minutes of physician specific time for review, research, and final draft compilation for envoy.


Above answer was peer-reviewed by : Dr. Vaishalee Punj
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Follow up: Dr. Dariush Saghafi (50 minutes later)
Thanks Doc, the twitches seem slightly better overall, but ive been using the clonasepam, xanax, and self treatimg with alcohol 2-3 beers in the evenimg, so i dont really know if rhat os mSkimg the twitching.

They didnt mention the CK, although i know of was ordered (by the primary, not the neurologist).

My workout routine started in Aug, 4-6 circuits of 2 exercises each, non stop/no rest then 15 min of cardio. Very tough and challenging, also started squarting, lunges, jump linges, step ups for legs, and 8mph sprints on the treadmill for a minute each, then 1 minute at 5 mph. I know i havent been staying hydrated like i used to, work got busy and my trops to the fountain decreased...i ised to drink 100-128 ounces of water per day just at work, now maybe 25.

Lets hear the poem, and more reasons why i dont have ALS. Thanks for everything, youve really saved my sanity and fot me off the clif

My wife agreed to go to counselong with me, so om cautiosly optimistic.f
doctor
Answered by Dr. Dariush Saghafi (16 hours later)
Brief Answer:
So here's the poem

Detailed Answer:
Now, don't let this go to head or anything but I've written a poem for you. And for sure DON'T TELL YOUR WIFE I wrote this for you...Then, I might need to go to counseling with MY wife! HAHA!

AN ODE TO BENIGN FASCICULATION SYNDROME (BFS)

If it twitches while in song,
If it twitches but it's strong,
If it twitches, twitches,
Twitches, TWITCHES ALL night long.

If it twitches here or there,
If it twitches everywhere,
Yet the fibers do not rustle,
When you go to make a muscle.

And you've been to Doctor 1,
And you've been to Doctor 2,
And you've been to Doctor 3,
But they all just look at you!

And you've done your labs,
Your sticks, your jabs,
And those painful EMG's
To be told you're fine,
You're good- Go home
An allergy to Cheese?

So finally, you arrive at home
And those muscles twitch no less.
Think back to what your Granny said,
"Dear Child- it's BFS!"

Dariush Saghafi, MD

Question: Are the self medicating beers at 2-3/night strictly for the twitches or do you just like beer anyways? Reason I ask is because the beer could theoretically cause a rebound action of the twitches. In other words, you drink a couple of beers and it appears the twitches get less (this actually happens in another condition known as Essential Tremor)...great, you're happy, the body's happy, the beer company's happy. However, come a couple of hours later (depending on how many you've had and fast you can pee the alcohol out) and guess what, the body's control is gone...twitches come back....but they may rebound back a bit stronger than before. So you have a couple more brews....and the cycle starts again.

Now, I'm not saying that's what's happening....but from a purely physiological point of view since we said that the Wellbutrin is known to cause these twitches as side effects and the aim to cut back on that medication to get rid of the fascics then, anything that can cause REBOUND fascics is not going to help the cause and potentially prolong their presence.

So if you could reduce Alcohol consumption until we see where we land with these things that would be helpful.

Thanks for update on exercise regimen. Sounds like a winner of a workout program. Mind if I borrow it for our wrestling team? I've been doing an escalation program on the treadmill with 1 mile hard runs x 3 at a time and military style cals in between each mile run. Final speed after 3rd mile is 8 mph. I'm trying to work up to 10 mph within the next 6 weeks. Gotta get after my conditioning so I can beat the crap out of these kids---LOL.

Ooohhh....hydration, HUGE issue and when you combine that with the fact that you're doing the brews which cause diuresis (loss of fluids) and your hard exercise program? Twitching is totally expected under those stressful circumstances....so make sure you're drinking plenty of fluids...and even more necessary when working out. You should be sipping on a bottle of water (not gatorade necessarily) every 20 minutes during workouts.

GREAT NEWS ON THE WIFE GOING TO COUNSELING WITH YOU. GOOD STUFF....You'll tell me how that goes and bring her into this conversation at some point as well. She could be a very important motivator for you in helping deal with these twitches.

Just like the poem alludes to....if you did have BFS...and I don't know if that's the right answer at this point since a lot of stuff is still in flux but if that were the diagnosis then, the next step is you need to accept that diagnosis and move forward with life knowing that you may be fasciculating at work, in the gym, in the showers, in the bank....whatever, and you can't be self medicating for the rest of your life just to get rid of the fascics....because we know it's not necessary and makes a lot of things worse.

So, let's keep these things in mind....let's tune up the engine as I've recommended and see what the next round of labs might be. I think I wrote out a short list of labs that I'd recommend in some other message. See what your doctor thinks....if they don't want to do them, that's fine...don't push it....I think making some of these other adjustments as well as getting rid of the Wellbutrin for something else...LIKE A GOOD TIME RECONNECTING WITH THE WIFE? How about that as a good antidepressant instead of a pill?

Ok...anything else? Then, it's time for me to close down the shop for a couple hours....it's 5am. Gotta be in the office by 7:30a, got a bunch of yahoo doctors I gotta teach this afternoon who think every headache is a migraine and needs narcotics to treat! Ay vay! Got some more meetings later downtown, then, try and figure out what to do about a distraught friend who put herself into a predicament by joining an upstart company (She's a pediatric nurse by the way..intelligent, right? HA! not!)....quits her nursing job she had steady at the hospital for this upstart company in Health Care....she didn't even have a firm or designated title or position. They just "hired" her like 2 months ago.....so guess what they did? They cut her...not because she was bad...she's outstanding...but they probably just overextended themselves and couldn't find a use for her! Sheeessshhh.....now, I'm trying to get her reconnected into something! Then, after we handle that I'm hoping to get to the gym.....

And of course, check a few questions in between....

Be good and don't forget about those feedbacks and STAR RATINGS....they are so very much appreciated and if you would CLOSE THE QUERY so they can archive the thread. You can always recontact through my new personal link:

bit.ly/drsaghafi

This query required 30 minutes of physician specific time for review, research, and final draft compilation for envoy.


Above answer was peer-reviewed by : Dr. Bhagyalaxmi Nalaparaju
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Follow up: Dr. Dariush Saghafi (2 days later)
Great poem, im honored! :) Its been 2 days on minimal wellbutrin, lower caffeine and more water...very low tremors to report. Also no exercise, which is part of doctors orders. Had some slight calf tremors this AM, but they did go away. Have been playing golf every day.
doctor
Answered by Dr. Dariush Saghafi (17 hours later)
Brief Answer:
As Fat XXXXXXX Would Say, "Hey, Hey, Hey!"

Detailed Answer:
That sounds like pretty news to me. For what it's worth the aldolase levels being elevated in the face of your clinical symptoms dissipating is pretty good enough for me to again emphasize that what was going on had more to do with medication induced side effects than anything else. You definitely don't have ALS. I don't think it's necessary for you to stop exercising but if your doctor ordered that and you want to show respect...then, I support that decision BUT ONLY for 2 weeks.

I wouldn't've restricted your exercise at all. In other words, by pulling back on the medication AND ordering to stop exercising 2 variables were changed at once...and possibly 3 if you want to throw in the fact, that you were probably also told to HYDRATE, HYDRATE, HYDRATE.....

So, at the end of all of those changes....if the aldolase goes down....what exactly was it that caused it to go up in the first place? We have no clue.

But again, doing what your doctor is asking is fine by me.

Thanks for liking the poem. I came up with that little ditty in about the same time I believe that XXXXXXX Gates from Bread said it took him to write out the words and music to the beautiful pop song of the '70's that took the country by storm, "If"....remember that track? I think it took Tchaikovsky slightly longer to compose the entire 1812 Overture in his head as he took a walk around the block where he lived....My prose is of no significance to either of those pieces of work but you have to admit....it's cheerier to read that than a mundane explanation of BFS.....In fact, I seriously doubt you even have BFS anymore given the improvements that are taking place in the face of making these other changes...what do you think.

This is a classic case of medication induced fasciculations.....in fact, the thought strikes me that this case could be very instructive to other doctors and colleauges if I could package it up in a 5-7 min. Power Point presentation and submit it for review and discussion. Oh, man, you'll be famous yet.....poem followed by case review and dissemination as a way for other physicians running into the same questions by other concerned patients from the ALS bucket challenge....

In fact, how's this for a test of fire?

Once your twitches completely subside in the next few days you can bump the Wellbutrin back up to where you had it when your twitches were at their best levels for all to see and see how long it takes you to go from "All Quiet on the Twitchless Front."....to a state of "Twitch, Rattle, and Roll" or the Chubby Checkers favorite and mine, "Let's do the Twitch!"

Now, I'm getting silly...but no worse than Monty Python and his Flying Circus as they performed in total hilarity the sketch "The Ministry of Silly Walks" in 1970...

http://www.youtube.com/watch?v=IqhlQfXUk7w

After you've unwound a little with that sketch and we come back from the Ministry to reality the truth is- I believe it is altogether possible and likely to get off the clonazepam...in fact, you need to be careful because the benzodiazepines can actually have a paradoxical effect of fasciculatory induction if they are used too extensively in hypersensitive individuals for a prolonged period of time. I recommend your trying to come down from the Klonopin on a slowly tapering schedule so as not to experience any rebound.

Bottom line is you likely don't have BFS either....but no matter...the poem is yours to keep for someone who may REALLY need it....Pass the favor forward.

As always, it's been a blast chatting with you and I wish you well.

Another vote of confidence and STAR RATING would be graciously accepted if I've added any more to your reassurance bank of knowledge as you continue to improve and hopefully get farther away from the worries of having ALS.

Cheers!

This query required 50 min. of physician specific time to review, research, and document in final format for envoy.
Above answer was peer-reviewed by : Dr. Yogesh D
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Follow up: Dr. Dariush Saghafi (38 hours later)
Hi Doc, feel free to use this case in any presentation. Ive got the wellbutrin back to 50 mg, drinkimg more water, and taking the clonazepam. The twitches subsided for the last few days, although they are back today. Had a foght with the wife this morning, not sure if rhat had anything to do wiith it. Going to counseling for the first time tonite. Dad is havimg a below rhe knee amputation on Thu, very bad and chronic sore on his heel whicj is only getting worse.
doctor
Answered by Dr. Dariush Saghafi (14 hours later)
Brief Answer:
Still sounds like things are on the mend

Detailed Answer:
Thanks for the update. Sorry to hear that your personal life is having some speedbumps in it....happens to the best of us....stiff upper lip, eyes forward, and one foot in front of the other.

I'm glad that the twitches finally took a hiatus. Not concerned that they came back a little....not unexpected....the same thing happens when summer turns into fall....start getting colder, colder, colder, and then,.....YOU GET LUCKY and it suddenly warms up for a few days...and then, COLD AGAIN, colder, colder, colder, and before you know it...no more warm days.....the twitches will leave you as if stay on course. Do you really get measurable benefit form the Wellbutrin? I think that if you can get off of that completely that your twitches were virtually disappear....

Glad to hear that you guys had a counseling session....hope that progresses forward.

It think it's certainly possible that increased stress at home with everything going on is possibly a precipitant for some of your twitches....but...honestly, I think your body just needs to clear TOTALLY out of the toxic levels of that Wellbutrin. It'll take a week or 2 more I predict...

All the best with Dad.

Are we pretty well convinced (if not entirely convinced) that you CLEARLY DO NOT HAVE nor have EVER HAD ALS? I wish I could be so bold as to make the same blanket statement for the future....but that would be way too presumptuous for me...I don't want to get up to the Pearly White Gates and be Greeted by XXXXXXX who says, "Oh yeah....it's that really obnoxiously Holier than Thou Doctor Who thinks he knows more than God!"

I can see how it's going to go now.....they'll say, "You remember when you made that really bold prediction that somebody down on Earth wasn't going to get ALS?.....Well, God decided to ruin your reputation a little and so last night while he was asleep, HE decided to give him some Upper AND Lower Motor Neuron Signs!.....And he's got YOU to thank for it!"

That would be the most solid jinx I've ever seen happen in my life.....so we'll just avoid it...don't you think?!?

Good luck and keep me in the loop as possible as to your progress. And don't worry, 2 steps forward, 1 back is to be expected for a bit longer....slowly everything should get back to the way it was...and then, we can work on getting it even better!

Cheers!

As always, your feedback is greatly appreciated if so moved as well as CLOSING THE QUERY so the question can be properly processed, archived, and credited appropriately for future reference.

This query required 23 minutes to review, research, and document in final draft form for envoy.

P.S. Thanks for your permission to consider this as a case study. I will let you know if it gets accepted anywhere and then, you'll have both a POEM and a CASE ANALYSIS somewhere in the medical literature! LOL.
Above answer was peer-reviewed by : Dr. Prasad
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Follow up: Dr. Dariush Saghafi (9 days later)
Hi Doc, not so good news from my aldolase blood test retake. A brief history, on 9/12 I had the full blood test, the aldolase came back 8.1 (everything else was normal). My doctor told me to not work out for 2 weeks and retake. So, I didn't work out at all, played some golf on 9/19, 9/20, 9/21, and retook the aldolase test on 9/30. The results came back at 8.7, higher than the previous test, so again I'm freaking out.

I've cut back to 50 mg of wellbutrin for the last few weeks, and I only have a medium 1/2 decaf coffee in the AM. The fasciculations in the calfs are slightly better, but tend to flare up after walking (not all the time, but sometimes). They are firing now, and seem more subtle than they were a few weeks ago. Also some minor fasciculations in the low legs, but only once in a very great while. My legs still feel a bit tired, but haven't noticed any weakness.

So, is elevated aldolase a predictor of ALS or any other issues? My neurologist appointment isn't until Nov 8th, so I don't know what to do. Any help/guidance/reassurance would be helpful, if possible. :( I had been feeling in better spirits, but this is definitely a setback for me mentally, big time.

Hope all is well on your end,

XXXX
doctor
Answered by Dr. Dariush Saghafi (11 hours later)
Brief Answer:
Easy does it on letting your mind run away again

Detailed Answer:
Good morning! Nice to hear back from you and yes, I've been thinking about you as well. Sounds like your twitches have greatly improved. So that's one STRONG piece of evidence against ALS, right? And that's on the basis of....what?......that's right...cutting back on the Wellbutrin. Have you asked your doc what other substitute drug can be found for the Wellbutrin as that can and does cause muscle twitching as a side effect. Have you tried on anything else for the mood disorder? For example, Abilify, Lamotrigine, or something else....I'm no psychiatrist so I don't want to keep going but if you can find something to sub for the Wellbutrin, perhaps the fasics can be totally suppressed.

So your aldolase is elevated in isolation to everything else? Fasics in the calves you say are SLIGHTLY better but flare up after walking? Are they constant? How about while asleep? The answer to your question about aldolase being a predictor for ALS is NO.....it could be off the charts and it's not ALS.....it's a muscle enzyme which when elevated obviously indicates some type of excessive "leakage" from the muscles but going back to everything we've talked about....it could simply be on the basis of the all the fasics that you're having which could very well be due to the BFS that we've talked about...

I don't know if I'm doing you a favor or not by sharing this link with you but read this guy's account of his own twitching problem and his SOLITARY ELEVATION in CPK which as you probably know is another muscle enzyme:

http://www.medhelp.org/posts/Neurology/benign-fasciculation-syndrome/show/0000

So although I can't say that your aldolase levels being elevated as they are is "nothing at all"....I honestly, can't think of a better diagnosis to your problem right now at least, than to say "IDIOPATHIC Aldolasemia".....how's that for a Quasi Invented Medical Term? In fact, I'll include in your case study...which by the way I am writing up with my nurse and we are going to seek editorial board permission to present it as a case study on QuantiaMD. I guarantee it will generate feedback from other physicians which can only benefit you....

Then, you write "any other issues".....so you've left an out....if not ALS then, "what" is your next question and I have to be brutally honest with you and say, "I don't know then, what...."--- AT THIS TIME.....except for the diagnosis of BFS which we've already discussed. I would not be in favor of any form of nerve/muscle biopsy for something like this...way too aggressive given the data we have of normal EMG, neurological exam, etc. And anybody can rattle off a list of known diseases from the internet....I consider myself better than that and refuse to utter that sort of thing just to COVER THE GAMUT or my butt...and say that I simply don't know.....

But I'm willing to apply a little benign neglect to the situation and keep checking up on things here and there to see how things are going....so if I could impart some of that same Laissez Faire attitude to you....then, you could probably enjoy working out a little now knowing that you're keeping yourself physically fit and don't have to live in a bubble waiting for it to burst.

If you wanted to chase down really weird and crazy types of muscle diseases then, you could ask your primary to put you through a battery of molecular genetics tests which are now available and see what that turns out.

In my case, if it were me....I would continue, steady as she goes and allow things to develop on their own clinically. The more we try to fit the circle block into the Square peg hole the more likely we are to become frustrated and unnecessarily anxious about things. You gotta breathe through your nose and exhale through your mouth.

Off the subject question.....how is counseling going with the wife....and how is dad doing? What's his opinion on your medical situation? What's your wife's opinion about things? Why not let her right up the next response?

And you know the drill as we close out this question. Your kind feedback is always greatly appreciated as well as CLOSING THE QUERY so the question can be properly processed, archived, and credited appropriately for future reference.

And by the way, I've found another link that you can you and helps me out as DIRECT QUERIES are more beneficial to me while they do not cost you anything extra. Maybe you do this anyways--- but use this link to write follow-up questions after you've closed any query.

http://doctor.healthcaremagic.com/Funnel?page=askDoctorDirectly&docId=68474

This query required 93 minutes to review, research, and document in final draft form for envoy.




Above answer was peer-reviewed by : Dr. Ashwin Bhandari
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Follow up: Dr. Dariush Saghafi (4 hours later)
Hi Doc, thanks for the answer. The fascics are not constant, but i have been taking clonazapam in the AM, so i dont know what the true fascic basline is. I dont think they fire while im sleeping, but they do sometimes start upon waking up, but sometimes not. They seem to get better as the day goes, but that could again be the clonazapam that i take in the AM, then alcohol at night. On that subject, i read that elevated altolase B is an indicator of alcoholic liver damage, ive been hitting it pretty hard infortunately, an i wonder if that is causing the rise in aldolase and the lab is not differentiating between aldolase A and B. Also, i wasnt sure when you talked about normal EMG and neuro exam, i havent had those yet.

Counseling is going good, things are coming out and the therapist is helping us work through them, im cautiously optomistic. My dad is doing much better since the below the knee amputation last week, no more infection, necrotic tissue, and antibiotics to screw him up mentally. Hes starting on the road to recovery and to getting back home, which makes me feel great. He doesnt know about my issues im having, i dont want to worry him. Cool about the QuantiaMD case study, looking forward to reading it if at all possible. By the way, i attached the workout i was doing in the last message, i was on week 6 when all this went down. As youll see, lots of leg work that i had not previosly been doing. Could that have triggered something and/or possible strained the calf muscles?d
doctor
Answered by Dr. Dariush Saghafi (25 hours later)
Brief Answer:
Getting baseline activity on Fasics not a bad idea

Detailed Answer:
Good morning sir. How goes it today on a chilly day in XXXXXXX Remind me of your location again?

So you give me an idea which perhaps has merit. How about we try and really get a good baseline (as much as possible) on your fasciculatory activity? To do that you would need to get a bit of a stiff upper lip for a couple of weeks and avoid using clonazepam, alcohol, and potentially take the Wellbutrin out there (which I've mentioned before but I have a feeling you don't like that idea! LOL).

Then, we will get information on frequency, duration, and body geography as to where your fasics are setting up shop. If they are happening frequently enough at that point, you could even take some video of them. Are they readily visible? Do they ever cause a limb to jump or jerk?

I'm sorry I had the idea that you'd had an EMG and neurology examination were done in the past....don't know why I thought that.....There is a very interesting study published not too long ago where the actual fasciculatory activity of something like BFS and ALS were compared. The authors believe that it is possible by EMG criteria alone to tell the difference between these 2 entities. They do their work out of Vanderbilt I think. You anywhere close to that center? That's XXXXXXX TN. OBVIOUSLY, a hands on neurological examination is called for in this case and so this should get done sooner rather than later.

Of course, whenever you hit a neurologist's office the likelihood of walking out WITHOUT an order for either an MRI, EMG, or carotid doppler (only if they have the machine in their office! HA!) is probably as likely as if you were to hit a McDonald's and walk out WITHOUT either Hamburger, Big Mac, or French Fries.....NOT LIKELY! LOL.....so let's talk a moment about an MRI that the neurologist may ask you to get of either the brain or the spinal cord.

I think an MRI of the brain or even the spinal cord would be a very very very VERY LOW YIELD type of test to get in your case....again, this is on the basis of all these LONG DISTANCE medical examinations and opinions which I admit are less than optimum but then, again, I think I'm fairly secure in saying that per your story a brain scan is going to be READ as normal.

Notice that I didn't say that the brain is NOT THE SEAT of the problem....because in point of fact, if you have BFS, then, we DON'T know what the heck causes that and why couldn't it be the brain? Get my point?

We used to say that Essential Tremors people had nothing to do with abnormalities in the brain and that it was all in the peripheral nerves...or it was due to iron deficiency....and guess what? Now the prevalent theory is that there is a miswiring in the black box in the head....so, in your case.....if there is a condition such as BFS which is making you have these things then, I couldn't say the brain's not involved but I just don't think it's very likely that a scan will show us much that we couldn't surmise already from your neurological examination.

I'm only making a big to do about it so you don't go spending a whole of money (if insurance is going to make you pay for it) on nothing. I know that the EMG will probably make you feel you much better if someone can read it to say that it's definitely not ALS...and I know it would make you feel even better yet, if an EMG could tell you that the fasics are DEFINITELY from BFS.....right? Assuming the reader/operator is aware of the study I'm talking about (we could get them a copy if it turns out you're planning on doing it).

You're absolutely correct about the aldolase being elevated in people who use alcohol and I hadn't really thought of that at all since I was trying to figure out why your MUSCLE CONDITION might be causing a bump in the aldolase WITHOUT moving the CPK's! You CAUGHT ME NAPPING on that one! And that's something I did know at one time....now you recharged that little piece of trivia in my brain. Thanks!

CPK turns out to be the single most important laboratory test of all the muscle enzymes that shows abnormalities in people who have muscle conditions or diseases. And so, that gives us more reason to feel good about what all this means because your CPK's are normal from what I recall, correct?

I would definitely prefer to see you using more clonazepam in the afternoon or evening as opposed to alcohol for all the medical reasons you are well aware. Both medications have addictive and dependency properties....but clearly alcohol can mess up other organ systems more when used chronically and obviously with your trying to get on track with counseling and so forth this could represent an impediment.

But again, what if we try and get this fasciculatory baseline first above everything else which would mean halting all clonazepam, Wellbutrin, AND alcohol. Of course, in place of the Wellbutrin I would want your doctor to choose another antidepressant that is NOT KNOWN to cause fasciculations as a side effect...(I haven't a clue which one that would be off the top of my head....that's their job- and why your PMD gets paid much bigger bucks for his opinion than what they pay on this network! HAHA!).

Good to hear that your dad is doing well and that he's on a better track....when he gets back to his normal self maybe he can help you sort some of this stuff out too....I understand you don't want to worry him....but if you're a father as I am you'll agree that if your child were to come to you (at any time in your life) with a concern about a health issue or otherwise, that you'd be interested in helping them solve the problem and would never consider it thing of burden or excessive worry for their having mentioned it to you....I suppose there are limits to that way of thinking but for the most part I think I'm on target.

Really good news that you and your wife are making inroads with your relationship. Do these medical issues have anything to do with what's going on between you two? You've got to cap that alcohol usage if you think it's getting heavy because that kind of stuff turns women off big time when they're in marital therapy. Gives them a reason to shut down and get closer to calling it quits...you know what I mean? I see that kind of stuff all the time in the Vets that I treat.

I will definitely send you a copy of the case study we want to publish on QuantiaMD if it's accepted...we'll see. For some reason I thought we had more testing and neurological data available which is what a case like this needs...so until you see your neurologist...we probably won't be able to move the case through the editorial board. They always want "hard data" in something like this and the labs you've had done through your PMD aren't going to be quite enough for me to build the case but if you get a neurology examination (not even EMG or anything else....) and that's clean (except for the fasciculations maybe if he witnesses them) then, we can run with that and build the article.

I don't think that fasciculations enough to cause this much concern and consternation on your part should've been caused by just doing heavy workouts with the legs. I've done similar workouts in the past where I literally cannot walk for 5 days...legs, like jello, rubber, whatever...I've done leg and back workouts where I've actually gotten severe sciatica that lasted up to 9 months before resolving and fasics never were a part of that picture....at least not the way you're having them.

Do answer this question though.....are your fasciculations exclusively localized to the lower extremities? To the thighs? To the calves? Or are they generalized?

Uggg....the clock just ran out up top....means I've been typing for 60 minutes. Ok...going to submit this and see your responses later...

Have a good day, GO BROWNS! Say hello to the wife.....have her write a little on her feelings as to what's going on....another opinion and point of view could shed some more light on things you haven't either seen or paid attention to.....MY EXTRA SET OF EYES that I can't have due to the nature of these long distance visits! HAHA!

Cheers!
Above answer was peer-reviewed by : Dr. Vaishalee Punj
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Follow up: Dr. Dariush Saghafi (1 hour later)
Hi Doc, Im in Western Massachusett, go Pats!
I did have a neuro exam in 1994, but no EMG or other tests, just an office visit. Does that change your opinion regarding ALS?

The fascics are 95% in the calfs, sometimes a twinge just above and around the knees, left tricept, and last night lower lip. They are sometimes visible, but i have a hard time catching them now that its long pants weather. They havent caused a limb to jump or jerk, exept for maybe last nite once but i cant be sure. Yes, CPK is normal.

Ill try cutting back on clonazepam and alcohol for sure, and take down the wellbutrin too. The medical issues are not rhe cause of our relationship issues, but its obviously not helping. She tries to be supportive, but ends up telling me to get overr it and stop thinling about it...i dont think she wants to think about the possibilities :(

I do have a video of the fasics from a few weeks ago when they were really going, but the XXXXXXX site only allows pictures, maybe the full site has more options.

My neuro exam isnt for another month, its going to be a tough month to get through mentally unfortunately, i wish i could get this done sooner, any thoughts?
doctor
Answered by Dr. Dariush Saghafi (22 hours later)
Brief Answer:
Now that's interesting- neuro exam in 1994

Detailed Answer:
Well, do tell....what was the nature of the neuro exam in 1994? Were you having these fasiculations even back then? And how did the neuro exam come out and if you did have fasiculatory activity was EMG contemplated? If not, why not, if so, what were the results. That bit of information can definitely push me into even a more staunch position of saying that what's going on right is ABSOLUTELY NOT ALS.....is that a good thing to say as far as your concerned? I hope so.....but I'll shutup and let you tell me more about what on in 1994. Were you also being treated at that time for depressive mood disorder, anxiety, were you drinking heavily, all that stuff?

And the fact that they are so localized in the calves is also very positive in terms of this being ALS.....you know from your reading I'm sure that over time, fasics become visible and present in all limbs and eventually the torso. The only place they really don't get to with much frequency or vigor is the face and that's because motor nerves in that part of the body are taken care of by cranial nerves which tend to be immune from the effects of the traditional form of ALS or BFS.



I understand that your marital difficulties are multifaceted perhaps but that your fixation on medical issues which may not be as negative as perhaps, you perceive them to be or potentially be doesn't set well with her....I can understand that.....but you guys are with a therapist for the marriage and you feel you've made some progress there.....what about a good psychologist type person for you? I'm getting the impression that your PMD is the one who is treating you for your mood problems with medication but it seems to me you should really be a GREAT CANDIDATE for cognitive behavioral therapy....not just be given some antidepressant. Someone with experience and professional knowledge needs to get inside your head and figure out how you TICK......does that make sense.

Someone needs to somehow find the switch that I know you'd love to turn off yourself but you simply don't know how....I can appreciate how things are going for you and what you're feeling. The problem is that others simply have a difficult time adjusting or adapting to that type of personality and over time it wears on them...in this case your wife....have you been together with her since 1994 or before?

Yes, by all means let's stay on track with the plan...let's see where these fasics "fall" as it were if we just sort of "let them hang their hair out a little bit......" I need you to see what you can do about the alcohol, either stopping or replacing the Wellbutrin, and even dialing down the Klonopin. I'm cautiously optimistic (to borrow your phrase) now that we have a little more history on the neuro exam of 1994. I think this could be potentially very good news.

But then, there's that SWITCH that we need to find in your brain! LOL! Well, let's just try and take 1 step at a time.

I don't know how to get your neuro exam or EMG done sooner unless you just start making phone calls looking for a provider that can get you in right away.....that would probably also depend on your insurance coverage since not all doctors accept all insurances.

BTW, did you tell me if you worked or not? If you don't what did you do? When did you stop and why?

See if you can upload the video clip...that would be good.

Anyways, I don't know what the PATS did yesterday but did you catch the Brownies coming from a 28-3 deficit at the half to beat Tennessee 29-28? That was a work of beauty.

And, I'm still asking that your wife write me a few lines...can you get her to do that a little? Trust me....it'll be therapeutic for her...tell her, I'm cool with however, much or little she wants to say about you...anything.....I'm not a shrink (thank goodness) so that's not why I'm asking for her input...but I'd like to just "hear" her side of things as far as this particular medical condition is concerned. If you limit her to that much of the tree, it'll be fine....we'll let her put the branches on after that to the extent she's comfortable.....yes?

Cheers!
Above answer was peer-reviewed by : Dr. Ashwin Bhandari
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Follow up: Dr. Dariush Saghafi (22 hours later)
In 1994 I was having hand tremors and twitching, plus twitches in other parts of my body. The neurologist (Dr Hazradji) was the same neuro who had diagnosed my mom in 1986, and is also the same guy im seeing on Nov 3rd. He gave me an exam in his office and concluded i was having extreme anxiety. No further testing was done. He prescribed me some anti anxiety pills and the tremors went away. Ive been able to use this method throughout the years whenever i would get twitches, (turns off "the switch"), but this time around it doesnt seem to be helping as much. I must admit that i probably have a higher tolerance for zanax, so im not suprised that it didnt work as well when these calf fasics started. In 1994 i wasnt depressed, but in 1996 my fiance called off the wedding, which threw me into a major panic and depression. I immediatly sought out the help of a therapist, who i continue to see off and on whenever things go sideways. Ive been seeing him every week for the past year (marriage, father). He diagnosed me with mild depression in 1999, and ive been on antidepressents on and off ever since. As far as drinking goes, i would say ive probably drank 5 out of 7 days a week going all the way back to the early 1990's.

Its been 2 days of no klonopin. Yesterday was very little fascic activity. I did some yardwork yesterday, and the calf fascic are back a little bit this morning. Doing 50mg of wellbutrin every other day, trying to taper off (im pretty good at tapering off).

Ive been im IT since 1991, i currently work at ISO New England supervising a team of data architects and business intellgence professionals. ISO New England monitors and manages the New England power grid, administers the wholesale electricity markets, and plans for future power generation in New England. Great job, no stress.

Ill try to get XXXXXXX (wife) to comment, and ill try to attach the fascic video when im home and able to download the video to my computer.

Its hard dealing with all this stuff.
doctor
Answered by Dr. Dariush Saghafi (30 hours later)
Brief Answer:
Thanks again for all the info.

Detailed Answer:
So you've had twitching and tremors since the mid 1990's. Diagnosed as stressed out and anxiety in you by the same neurologist as who diagnosed your mom? With ALS? Is that correct?

So at that time some medication (likely some kind of anxiolytic or benzodiazepine) seemed to keep your twitches and fasics at bay....but over time this drug has lost efficacy. There's a good deal of ETOH use in your history as well.

I would look forward to hearing a few words from XXXXXXX Fascis from 20+ years ago which are no longer working AS WELL to the medication you had back then, still does not spell ALS to me....admittedly the history in your mom (if she did have ALS) would be concerning...but that's only if she's definitely got ALS.

Did the neurologist from way back when make any mention of BFS?

I can imagine how hard it is to deal with...but it sounds like the Welbutrin really contribute A LOT to the fasics in the calves, no?

Bottom line.....I'm still of the opinion that you do not have ALS. Sorry to break the GOOD NEWS! LOL!


Above answer was peer-reviewed by : Dr. Vinay Bhardwaj
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Dr. Dariush Saghafi

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What Does Elevated Aldonase Level Indicate?

Brief Answer: Message on ALDOLASE received Detailed Answer: Good morning once again. I'm glad to hear that it appears the fasciculations are getting a bit better and it seems to be coinciding with your reducing the Wellbutrin, am I right? I also understand that your ALDOLASE levels are elevated. How about CPK? Truthfully though you can imagine my sitting here typing all this and STILL not writing home about anything, can't you? Sure you can...I'm a doctor-- nothing excites me (not exactly true--- I've got 4 little rugrats you know!). Please remind me of how much you actually exercise. Is it on a regular basis? Rather heavily? Can I look for you on XXXXXXX Ninja Warrior or something and tell everybody that I've gotten emails from you? So, if the aldolase is up but the CPK is not then, I don't think that's very tell tale of anything as far as I'm concerned. Now, which doctor's office called you, the neurologist or the Internist with these results? If it was the neurologist's place then, I would have every confidence in their making sure they have ordered an adequate supply of labs looking for evidence of muscle deterioration. If it's the internist's office then, I'd suggest they pass the info. on to the neurologist since he may wish to add a few more markers to be sure they're getting all pertinent labs. In any event, drink plenty of fluids for the next few weeks. You're trying to wash as much of the CPK and aldolase out of your system. Another way to say that is you don't want to be causing your muscle enzymes to elevate in concentration because of self dehydration (i.e. not enough fluid intake; which we are all guilty of during the day...). Then, your numbers will be falsely elevated. I wish I had a great fix for your situation on the separation...I guess, as with twitching muscles, tincture of time very well could be the ticket to the future....but what is a mere mortal to do except face each day's challenges with one goal in mind....be the winner of today's nasties that are out to get 'ya...right? Head up, keep busy, stay focused on moving your life forward, stow the boat if you've got one, saddle up the horse and get out ridin' fences (Eagles-) but just keep movin' forward. She's going to do the same thing and I think for the next few weeks we gotta just stay on track with PROVING THAT I'M RIGHT! I've got a rep to uphold 'ya know....you best not think about going and catchin' ALS on me....got Las Vegas odds ridin on my predictions....and XXXXXXX told me it was a done line so...don't screw it up! ROFLMBO! Any way you can get off the Wellbutrin? I have a feeling if you can do that you might just stop the twitchings altogether and that would pretty much stop you for talkin' about any more ALS, right? If it's a mood elevator you feel you really need at this point just ask your provider to give you something that doesn't really cause fascics...problem is any of those types of meds are likely to do the same thing. For some reason your system may be mildly hypersensitized at the terminal muscle contact points of the peripheral nerves...not sure why. But if we get the twitches stopped, then, we can work on goin' after the damsel in distress.... Dude....you down man? I don't think I shared my little poem on BFS with you did I? Let me know and I'll include it in the next message....you've still got 2 wishes left, right? I just don't want to inundate you with meaningless stuff if I already sent it to you....but I came up with it the other day when we were talking....who knows maybe I can start a compilation of these things....call it, "Poems you can put your Diseases to Sleep with!" HAHA! All right...I'm out...write back and stay focused.. As always, if the words are worthy, would love to hear you shout it on back....if not, hey, put it a lid on it! HA! Oh, and here is my direct dial URL for the next direct query you wanna ask me: bit.ly/drsaghafi just like THAT...believe it or not, it works, no HTTP, no //, no WWW This query required 37 minutes of physician specific time for review, research, and final draft compilation for envoy.