many clean emg's but symptoms

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sinforzar1

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Hello, during the last 4 months I have experienced several als spinal symptoms. Furthermore, I took for my own a blood amino acid test where it was a glutamate alteration (x 3 times the regular levels) and an excess of alanine too. On the other hand, during the last 4 months I have had 5 emg's ( 2 of them needles were put on the 4 extremities, back and abdominals too). All of them came back without any abnormality. Normal neuro exam. 2 als neuros told me that it was not als but didn't provide me any other diagnostic. It would be appreciates if you could provide me your opinion regarding how reliable are those emg's 4 months after symptoms. Do you think it has been too early? Could these emgs change to positive after a few months from now? Regards
 

sinforzar1

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Any comment,opinion,suggestion would be welcome. Thank you in advance and happy new year to all
 

lgelb

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There is no research to validate amino acid blood levels as markers of MND. However, there is a great deal of evidence that serial negative EMGs even as early as 4 mos out from presentation, + a normal neuro exam in the presence of "spinal symptoms," has high specificity in the right hands (accurately rules out ALS).

Without knowing more about the symptoms you allude to, I can't suggest your next course of action. I can only say that nothing you have presented suggests ALS. The inverse is true.

Best,
Laurie
 

Atsugi

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If two neurologists gave you five EMGs and told you that you do not have ALS, you should believe them.

Perhaps your problem is not neurological. You should see your general medical doctor for more guidance.
 

sinforzar1

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Hello again,

First of all thank you very much for your replies. I appreciate it very much. My main concern (and this is because of my symptoms are getting worse and I don´t have yet any diagnostic) is the fact that may be the EMG have been performed too early. This is the point that I would like to share with you and to get your opinion (according to the previous experiences/cases that you know). The question is, assuming that i had spinal ALS, 4 months would be long enough in order to that ALS to be picked up in an EMG? I have read some cases for which at the beginning the EMG was negative but a few months later become positive. This is the technical point that I would like you to provide your opinion. Thank you very much in advance. I would like to congratulate as well to all which make this forum posible and to encourage to all with have been diagnosed with ALS to go on fighting and going ahead. For me all of you are heroes.
Regards.
 

lgelb

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Yes, we have said as much, if you are symptomatic, the EMG should be abnormal. That it has not been, several times over, is a strong validation that ALS is not your problem. I would suggest that you return to your internist for followup.
 

sinforzar1

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Thank you very much for your advice again.
Today I have got another clean emg and clean neuro exam from a third neuro and I have been requested to be followed up in 3 months (because of my symptoms). I have no choice to be in wait and see mode during these 3 months, no other alternatives... Time will be the one to clarify the picture... I will do my best to keep optimistic during the following months, hoping the best and being prepared for the worst. Regards.
 

sinforzar1

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Hello again,
I have another question, any of you have had any update from horevo from 2012 on? I would like to know whether or not she got a right diagnostic and to ensure whether her health problems were already fixed. It would be very appreciated if horevo or any other member could provide this update. Thank you very much.
Regards.
 

Atsugi

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Horevo had MG, not ALS.

Your EMGs were not too early.
Now you've had 6 EMGs and three ALS neurologists have told you that you don't have ALS. However, you don't believe them because...?

So now, after rejecting the professional opinions of the highly trained and experienced experts who deal with EMGs every day, you want some strangers on the Internet to give you an opinion?

My opinion is that you've wasted your countries resources and you're wasting our time. Go see your general medical doctor.
 

sinforzar1

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Hello Atsugi,

I do apologise if you feel that I´m waisting people time, it was no my purpose, of course. In fact, after my last experience, right now I appreciate time over anything else in the world and the last thing I´m interested in is waisting other people time.

The thing is that my last neuro didn´t disregard 100% the ALS as a possibility (although he told me that it was unlikely) despite of clean EMG and Neuro exam (performed by himself). This is why I have been requested for following up after 3 more (furthermore, I have been requested by this neuro to take more tests to disregard other source of the problem as miopahites, etc.. A kind of RMI on the muscles... Next week I will take this test.

My worries are regarding my symptoms (left leg weakness, right hand weakness, lack of right hand dexterity (I play piano and I notice that very much) and generic fatigue all the time. If I hadn´t that symptoms I would have forgotten ALS for ever. Additionaly, as I post on my first message, I got a x3 times over the average the glutamic acid on serum and I´m aware that abnormlatities on the glutamate cycle and increased serum level on plasma are common on PALS. Furthermore, I don´t have a diagnostic for all of that symptoms yet.

Clean EMG´s are the only thing that bring me something of hope regarding my current situation. As this is the only hopefull thing I have, I´m interested in knowing how reliable are at this time on a early potential ALS stage (There are a lot of cases where the abnormalities on the EMG where showed after some initial "negative" tests, on that fórum there are some cases...)

Regarding Horevo the last picture that I had is that she was worried because she was taking a treatment for MG but it was not working, I was not aware about any other update after that.

Sorry for such a long message, but I can not speak about this topic with anyonelse (I don´t want to worry my spouse, Friends...) until I don´t have a firm diagnostic (whatever it is).

Thank you to all of you again and sorry again if I have injured your sensitivity again.

My great encouragement to all the ones who are fighting his disease (patients & caregivers, familiars...).

Regards and happy new year (with delay).
 

sinforzar1

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Vantec news

Hello,

Is there anyone who is aware about what was the Vantec´s health problems cause? Did he figure out?

The thing is that he left this forum in 2012 and no news from then.

The thing is that he spent a year looking for the cause for his symptoms but he didn´t get any clue... Was he finally diagnosed with ALS? If was not the case... what was the problem?

Thank you very much.

Regards.
 
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KimT

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Re: Vantec news

If you have not been diagnosed, please stay on your original thread. PALS and CALS need support and the moderators really don't have time to answer questions such as yours. If someone left the forum, he probably resolved his issues.
Thanks.
 

Vincent

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Allow me to pile on, at NO time in my diagnostic process did I ever have a clean EMG. You have been told by 3 ALS specialists you DO NOT HAVE ALS. I personally would kill to be told what you have been told. Please go away. People who are dying, really don't have time to soothe neuroses.
Vincent
 

sinforzar1

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Hello Vincent,

Sorry if you feel that I´m waisting your time, but it would be appreciated if you could provide a key information. Where was your ALS onset (bulbar, spinal)? How long were you with symptoms before going to the neuro and taking the first EMG? Which was the "intensity" of your symptoms at the momento to take the 1st EMG? Did you show clinical weakness or note yet? In my opinion those are the key topics.

I appreciate VERY much your help, I´m aware about the great value of your time and the last thing I´m interested to is in waisting it.

My encouragement and my recognition for you and for all the PALS & CALS who are members of this useful forum.

Thank you very much.

Regards.
 

WendyWooG

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To be diagnosed you need to have clear indications on your clinical exam and your EMG. You don't so you don't have ALS.

When I had my first EMG I had a limp in my right leg and a slight tendency to drop things in my left hand. I had zero symptoms anywhere else! The EMG was thorough and tested my whole body arms legs ribcage back throats neck. It showed abnormalities in every area tested. That was summer 2015 my condition has worsened significantly but I still have some areas that have no clinical symptoms that I am noticing this is over 18 months later.

So the EMG's you had were not done too early. Several doctors have told you this they are the experts, several people on here have told you what you are describing doesn't sound like ALS. You need to go back to your general doctor and get them investigating what could be causing your issues. If you try to push for investigation in one particular area you could delay the diagnostic process. Be open to other solutions, by all means keep pushing your doctors for answers give them room to work.

Good luck

Wendy
 
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