Sarah,
I have never in my life , heard of anyone told they "may" have ALS with a "normal" physical exam and told that an MRI could suggest the possibilty of it.
I'll take that back , this poor guy once was told by a GP that because his tongue was scalloped , he may have ALS.It took him years of ALS specialists telling him he did not have it to believe it.
Even if this physician was a neurologist , which I am not certain of ?
He was not an ALS specialist ,as no way , would I believe an ALS specialist would even suggest the possibilty without extensive testing including EMG's.
ALS is a diagnosis of exclusion. A MRI can not diagnos ALS .
My husband was diagnosed with bulbar ALS - his MRI was normal. The MRI was used to rule out MS, Stroke etc.
If Becky has no symptoms , I would not worry. And I would again see an ALS specialist, if I was concerned immediately .
Migranes certainly are not a symptom of ALS
Lisa

Double posting again on this topic but here is the diagnostic criteria for ALS. Lisa

http://www.wfnals.org/guidelines/199...#neuroevidence


Clinically Possible ALS

is defined when clinical signs of UMN and LMN dysfunction are found together in only one region or UMN signs are found alone in two or more regions; or LMN signs are found rostral to UMN signs and the diagnosis of Clinically Probable - Laboratory-supported ALS cannot be proven by evidence on clinical grounds in conjunction with electrodiagnostic, neurophysiologic, neuroimaging or clinical laboratory studies. Other diagnoses must have been excluded to accept a diagnosis of Clinically possible ALS.

I am going to discuss the MRI findings with the top ALS clinic at the University of Utah, where I live. Im sure he will let me know what I can expect from the MRI finding.

As far as my migraines go, I usually would get them 4-6 times a month. I have not had one for nearly 4-5 weeks. I think that is a clear indication that the headaches are actually getting better and that it has nothing to do with what might have been seen on MRI.

There are other possiblities that the radiologist and my neurologist mentioned. (and no this was not a "learning hospital"). I am more inclined to beleive it is more x-linked or a genetic abnormality with my myelin.

I beleive he is just ruling out the worst case in the beginning and going from there. He did not want to do any tests of any kind at this point which makes me beleive that if he truly thought this could be ALS, he would have done an EMG or gotten another MRI. Just the mention of it in my report and when he said it to me, well, freaked me out.

I will continue to seek further advise and opinions as well as read more information about it.

Lets try to be positive. Thank you all for your concern.

Becky ,
I am glad you are going to see an ALS specialist.As this would be the most qualified person to rule ALS out or diagnos the disease..

What confuses me and absolutely biogles my mind is if most ALS Mri's are normal in ALS - what does consistent findings for ALS on a Mri mean ? What significance in diagnosing the disease itself could they have.
To me that just does not make sense - as if most Mri's of people with ALS are normal , how could it be a indication of ALS in someone who was completely asymptomatic of the disease ?
My husband was told his Mri was normal --it was only ordered to rule out other possibilities Ms , brain tumor -- --that may have caused his slurred speech , clonus hyper reflexes , exaggerated gag reflex that were seen in the clinical exam-

If you have a completely normal physical exam as you have posted - with absolutely no hyper reflexes , clonus , exaggerated gag reflex , atrophy , etc, -- I 'm puzzled why your physician would even mention ALS --


I understand the Mri - was done for migranes to rule out other causes for headaches -- but both migranes and headaches are not a symptom of ALS at all -

If the doctor did find abnormal findings on a physical exam consistent with ALS , that he neglected to mention -- I too wonder why an EMG was not ordered or an immediate referral was not made by him to an ALS clinic for further evaluation--

ALS is a disease if exclusion when no other explanation can be found to explain upper and motor neuron damage seen in a physical exam - it unfortunately can not be ruled out nor diagnosed first - as other diseases and conditions must be ruled out to explain physical symptoms and abnormal physical findings in a clinical exam-- this is true in saying the disease is even "clinically possible" as I posted on the accepted clinical diagnostic criteria on the link above.

I lost my compusure , in my first post , and should not have called the physician a jerk, but when you posted all he could think of was ALS after seeing your Mrii , for a migrane no less --I just did not and do not understand how that is possible --as ALS can mimic a wide variety of more treatable conditions -- migranes are not a symptom of the disease --and Mri's in most people with ALS are normal -- coupled with the fact you posted ie said your physical exam as well was normal --it just does not make sense to me of why he would even mention ALS.
Why scare you by even mentioning something like ALS --with no evidence to support the clinical possibilty of it --
Lisa

Sarah is correct.

Very few people with ALS do have abnormal MRI, however these changes only occur in "late" stages of the disease.

Thanks, Lisa, for easing Becky's mind...her Dr isn't very professional

The tech who started my NCV/EMG started talking 'ALS' half way through the procedure and i told him to shut-up as he was no ALS specialist...i am waiting for my neuro to do ALL the tests before i want to hear those words....

Thanks Jeannie so much for clarifying that --

always good to see you posting and to see you are still hanging in there ---


Daisy Mae ,
Nice to meet you--good to hear you are waiting for an ALS specialists opinion -- before worrying too much -as he will insure all apppropriate tests are conducted --and the EMG is read properly --Lisa