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Alex123

Distinguished member
Joined
May 31, 2014
Messages
128
Reason
PALS
Diagnosis
05/2014
Country
US
State
California
City
Los Angeles
I was recently told I have probable ALS after EMG. I will ask the neurologist next time if he used the term "probable" in a technical sense (El Escorial criteria) or with a more vague meaning. My symptoms started as slurred speech and later a neurologist discovered I had fasciculations in several parts of my body. Besides slurred speech, lately I have had a rough voice and it takes more air for me to speak. I also choked twice wile swallowing (a pill and grapefruit). With respect to the rough voice, I first attributed it to the reflux I get at night (early morning). I have had rough voice (dysphonia) years ago at a time my EGRD was bothering me. But now I am wondering if this is due to the reflux or part of my neurological symptoms. So far it looks like I have bulbar onset ALS, but I am wondering if with these symptoms there is still a possibility of this being something else. I could explain in grater detail all my symptoms, but to start with, I wonder if the combination of bulbar symptoms together with fasciculations, leaves some room for something else or makes it very unlikely. I could find some other cause for bulbar symtoms and attribute my fascicullations BFS, but I think this would be too much of a coincidence. It looks to me that these two things together, and also an EMG that shows sharp waves in the cervical region, does not leave much room for enything else. I have read that in the case of bulbar onset, something to consider is Myastenia gravis, but I wonder if that would show the symtoms I have (I don't have eyelid weakness). Talking about weakness, I have not detected any weakness in my arms or legs. MS is also unlikely because it does not show in MRI of brain and column.
I'll greatly appreciate your opinions.
 
>I'll greatly appreciate your opinions.

my opinion for what it's worth is you get to up proper ALS clinic, do their three day evaluation, and get a realistic expectation of what's going on.

I do not trust neurologists, the Internet, or the ALS forums to guide what is possibly a terminal illness.

Kind regards,

Max
 
Hi Max,
Thanks for your reply. What I am doing is following two paths. On one hand I try to go to specialists, do the studies they recommend and listen to their opinions. On the other hand I do my own research about this disease and other diseases that might have similar symptoms. Even if there is a 1 in 100 chance that this might be something else, given its implications, I would do the testing for that other (unlikely) disease to rule it out. Up until now doctors have moved too slow, and I have to push them to get this diagnostic moving faster.
To give you a more complete picture of my situation, I am currently overseas taking care of my mom (I am only son). I have recently been seen by a neurologist who specializes in motor neuron diseases. He is the one who has given me the diagnostic of probable ALS. Even though I could not at this point do the 3-day study you mention, I am interested in it. I am planning to make a trip to Los Angeles and stay there for one or two months. If I find the way to make that trip (it won't be easy given my situation here), then I could have that study done. If there is some additional information about it you could give me, such as a link, I'll appreciate it. In the meanwhile I'll do some googling for it. Thanks again Max,
--Alex--
 
Alex it sounds like you are in a tough situation. Did you have an EMG of your tongue and facial muscles? You only mentioned cervical yet your symptoms are bulbar?

Max can tell you more but his neuro in Texas does a 3 day eval process which sounds great and gets everything done at once. I think if you go to one of the major ALS centers as an out of the area patient they might do something similar even if it is not their usual practice. Do you have insurance to cover you in the US? Even if you do not make it back for a 2 month stay could you come specifically for an ALS consult? We all have our favorite places to recommend. A lot of people go to Mayo, I swear by Mass General etc do you need the West Coast or California specifically?
 
It would be easier to evaluate the robustness of the eval you've had thus far if you wanted to share the university where you have been seen overseas? Obviously, they vary in quality and esp. for follow-up care, you want to find the best facility to which you have access.
 
> I am currently overseas taking care of my mom

where?
 
Alex it sounds like you are in a tough situation. Did you have an EMG of your tongue and facial muscles? You only mentioned cervical yet your symptoms are bulbar?
I had an EMG done on my chin and I think also at the button of my chin. They didn't put the needle in my tong. I think when they did the EMG on my chin the second time they found something (I believe it was polyphasic waves and waves with greater amplitude) but I am not 100% sure as this finding could have been in the cervical region, which was also tested. The first time they though it was normal (the bulbar one). But I wonder if a normal EMG in the bulbar region would make that much of a diference given the fact that I do have bulbar symptoms (dysarthria and dysphagia). In the cervical region, on the other hand, it looks like the EMG shows denervation but I don't have other symtoms such as muscle spasm or weakness in my arms or hands. I do have light twitching all over my body (it doesn't bother me so far)


Max can tell you more but his neuro in Texas does a 3 day eval process which sounds great and gets everything done at once. I think if you go to one of the major ALS centers as an out of the area patient they might do something similar even if it is not their usual practice. Do you have insurance to cover you in the US? Even if you do not make it back for a 2 month stay could you come specifically for an ALS consult? We all have our favorite places to recommend. A lot of people go to Mayo, I swear by Mass General etc do you need the West Coast or California specifically?
I would prefer to get a study done in the Los Angeles area. And the other thing is that a complete study would probably be very expensive. If I could have it covered by my insurance I would prefer to do it that way. I think I can get transfered to Kaiser Permanente which does have an ALS department.
 
I am in Buenos Aires, Argentina. The neurologist who has seen me is a member of the Argentinian ALS Association (ALS is called ELA in spanish)
 
First I want to thank you Max, Igelb and Nikki for your concern about my problem and advice.
Tomorrow I have to go to the hospital where most likely they'll make a deglutition study.
I am not very optimistic about this adding much new information but.. let's see.
These last two days my rough voice has improved a little, but my tongue problems have not changed. I still think my vocal chords problems may be due to EGRD and not of neurological origin. I have had problems certain times when tryin to swallow saliva at night. It appears as if my brain didn't know any more how to send the signal to the tonge muscles or the muscles got "asleep". After concentrating on it and trying hard, I could move the tongue again and swallow.
Thanks again....
Alex
 
It would be easier to evaluate the robustness of the eval you've had thus far if you wanted to share the university where you have been seen overseas? Obviously, they vary in quality and esp. for follow-up care, you want to find the best facility to which you have access.
My evaluation is not being done at a university but at the Hospital Italiano, Buenos Aires, Argentina. The neurologists seem to be good, but the EMG equipment may not be the most advanced (I may be wrong about this).
 
Hi Alex. If your EMG included needle under the chin that was of the tongue. If you need to stay in Kaiser for insurance then of course go there. If it is California you need check the NEALS ALS consortium site for their clinic list. You are right it is expensive. Of course bring all your records and especially discs of mris or other imaging with you. Depending on the quality of imaging you may not need those repeated but likely another EMG and who knows how much more. Good luck
 
It sounds like what I have burbar als. if it is its important to get med that saves nerves I use namenda xr 28mg and coconut oil and there are more things that help like practice karoki to strengthen throught and help voice its use it or loose it with als the loss is fast. I am working out in gym every other day to keep cramps away from my legs and neck its been about two years since I started talking different when I lost the G sound I got it back by using it but colds ect phegm over weeks to months put end to practice while I was sick I can still swallow I better do karoki and keep chewing to keep jaws strong.
 
You obviously have symptoms that raise red flags among the readership...and you sound dreadfully familiar to me in your recounting. That you go to a gym every other day is hopeful (that you are able to that is)...but the two year issue since onset is in your favor.

Others have urged you to go to an ALS clinic and I would second that idea.
 
>Others have urged you to go to an ALS clinic and I would second that idea.

Ditto that!
 
You obviously have symptoms that raise red flags among the readership...and you sound dreadfully familiar to me in your recounting. That you go to a gym every other day is hopeful (that you are able to that is)...but the two year issue since onset is in your favor.
Others have urged you to go to an ALS clinic and I would second that idea.

Mediasmart: I wouls like to make clear that I "Alex123" am not the one who wrote the post describing going to the gym. That was "dfield00601".
Just to make it clear. As dfield described his symptoms, I think it was easy to think that it was me.
Thanks anyway for your recommendation about the ALS clinic.
 
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