need help

[Lark2]

I dont know what to do anymore - after twitching in my legs from aug 09 till now and 2 clean emgs - one done dec 14th 09 and one on jan 20th 2010 - Two neurologists from the same practice telling me I dont have als.I have bouts of swallowing issues,lips dont feel right and now weakness in my rt leg and I know for sure my buttocks and thighs are getting smaller.
I just had the follow up emg last week on my left side and one location under lower lip on my face and again it was clean! Most recent blood work shows elevated aldolase at 15.6 - norm is less than or equal to 8.6.I am at a loss here - I have made an appt at the Als center in stonyBrook .......What else could be causing this?

 

[joelc]

Congratulations on not having ALS.
I hope they soon find out what is causing your problems.

 

[Lark2]

anybody else on the forum have an opinion

 

[katmomma]

I have too have been twitching, but since june of 09, and had 2 emg's done, the last one on my left side at the beginning of august, and they were clean. Now, I have weakness developing in both my legs, which has started at the same time, and also swallowing issues as well. With a clean emg most recently its doubtful that your symptoms are because of als. I know its so hard to get passed this, as I'm in the same situation. Its like, what else could it be?

 

[trfogey]

Explanation of aldolase test results:

Aldolase test: MedlinePlus Medical Encyclopedia

Don't see ALS on the list of conditions that cause elevated aldolase levels. Congratulations!

 

[rom623]

IMHO the basic issue is this: Googling these types of symptoms gives lots of links to this forum, and then the mind just takes off. We lock into the worst case scenario in our frantic efforts to "figure it out". In the past 3 years, I have been utterly convinced that I had:

- Stiff person syndrome
- Inclusion Body Myositis
- MS
- ALS

With ALS, I was so convinced because hey, I had studied this, and there was *nothing* left! I had found it all and this was the last thing left! But the more I study, the more I find there are a LOT of things left. Frankly, some of them are not very good either, but some of them are not as bad. I also have learned from reading here that there are specific patterns and characteristics of symptoms that will occur with true ALS, and if yours does not fit, you are going to most likely have a non-ALS EMG also.

The more we step away from "IT'S ALS!" and take a balanced view across multiple big areas - neurology (and we've all mostly done that one already), rheumatology, endocrinology, and metabolic - all ideally quarterbacked by a great primary doctor who we can trust - the more likely we will end up with answers. The problem is that this is a forum for ALS, and so the members here are not experts on all the other possibilities. Ideally there would be an "undiagnosed neuromuscular" forum somewhere where you and we could be pointed to and receive encouragement without burdening the PALS and CALS here, who have an understandably singular focus.


I was shocked to read that metabolic disorders can apparently cause a lot of neurological and muscle symptoms. They are very hard to track down as well.

 

[mamaoftwo]

There is such a place.

 

[trfogey]

The problem is that this is a forum for ALS, and so the members here are not experts on all the other possibilities.

The problem isn't the lack of expertise among the PALS and CALS. There is very little information about ALS, PLS, PMA, and PBP that you won't find here. If you want to, you could almost get the equivalent of a graduate school course on ALS just from reading the sticky posts on this board and the offsite resources linked in those sticky posts.

The problem is that the wealth of information here is simply ignored by the vast majority of "searchers" that come here.The most unhappy and most dissatisfied searchers here are, invariably, the most stubborn ones, who know more than their doctors and all of the ALS/MND websites on the Internet. They spend hours combing the archives of this board to find offhand remarks by diagnosed PALS that support their obsessive theories about their "atypical" presentation and progression, instead of realizing that their "atypical ALS" is most likely typical something else. Too much pride -- too little knowledge. Don't understand it, myself.

The sad thing is: all of the nonsense that the obsessives post here simply gets recycled, through Google, into fertilizer for the next batch of obsessives.

And the wheel of disinformation goes round and round....

 

[Lark2]

Thanks all for your input - Guess I will have to continue digging to find what the problems is...............peace to all

 

[rose]

Larry,
I don't know how the Aldolase test results correlate to elevated CK results, but, I think the tests are similar. For the undiagnosed who are found to have elevated CK, the super duper high readings are usually something other than motor neuron disease.

My CK was tested and found to be elevated above normal levels, but not overtly so. A friend on this forum told me that approximately 50% of PALS have elevated CK levels, but I've never researched it on my own.

 

[Lark2]

Hey rose
thanks for stopping by - my ck level was normal as were other enzymes.
The aldolase was the only one elevated - and all these additional symptoms just add to the confusion.i pm'd you let me know if you got it ...
Hope all is well.............larry