Concerned

[Mon]

I have another question to all, after reading many threads, does a neurologist have a pretty good idea after a EMG what could be causing an issue? if test is abnormal it would seem to me they could almost see patterns that look like ALS? Why do so many people have problems getting a proper disgnosis if they see neuro? Seems so many are all over the place. It there more than clinical presentation, plus EMG back by MRI and blood work? Would that not lead to a answer?

 

[Nikki J]

The bit about taking ayear to diagnose is very misleading. Most people delay being seen, go to their pcp eventually, who maybe does some tests or orders pt, then they followup and maybe get referred to an ortho or rheumatologist or someone who eventually bounces then to general neurology who orders more tests and then finally refers to neuromuscular.

once at neuromuscular it usually does not take long. A few weeks if everything wasn’t done. My sister was diagnosed in four days. Family history raised suspicion but her genetic status was unknown.

the majority of people on this subforum do not have ALS.

 

[Mon]

Thanks Nikki. You seem pretty rational and knowledgeable.

 

[lgelb]

Nikki said it. Also, in considering that "year," it includes waits for appointments, test results, and specialist referrals for plans that require them.

 

[Mon]

Do you know of people, maybe people on the forum, who are diagnosed without an MRI? I am aware of the suspected, probable, definate classifications.

 

[lgelb]

An MRI is not required for dx, but ruling out mimics obviously is, and often that entails an MRI.

 

[Mon]

Feel completely ill over this process. It the 1st thing i think of when i wake and it continues all day. I am convinced based on what ive seen, read and heard that this is where its going. Feel neurologist hinted at ALS with his related questions and then his remarks of dont do anything to heavy with the arm and keep your weight up. I know im not a doctor everyone but nothing else matches the issues my dad is having. Once a few of you explained muscle weakness it became clear. He can do certain things like hold something, not able to lift a cup, shovel snow but cant do up buttons because its only certain muscles impacted. You can compensate with some muscles, fingers not so much. Im consumed with this and almost want the Emg results now so we can see how worried we should be..cant figure out why they were not overly discussed. This waiting is eating me up..im just consumed. Might need to seek help to cope.

 

[Nikki J]

Limbo is hard. We can’t tell how realistic your fears are and we can’t reassure you. I think getting help to deal with your feelings is an awesome idea. As reading and worrying isn’t helping maybe step away from the computer? If the diagnosis is not yet made it means other things are still on the table

as a wise late member once said worrying before you cross the bridge means you pay the toll twice.

 

[Mon]

Thanks Nikki and thanks to all others who have taken the time to read my posts and reply. Have no more words, you are 100% right.

 

[Mon]

Hi all, MRI has now been done a week ago. I was wondering if any of you now if EMG can indicate the possibility of ALS immediately? It is my understanding that a neuro would see patterns that could indicate it? If thats the case, in most of your experience would it not be mentioned at that point as a possibility? Also is it treated with high priority? because in our case which i forgot to add earlier the neuro said see you in April?

 

[Mon]

Hi all, i was hoping someone could tell me their experience. If an EMG is abnormal and showing patterns of concern, did the neuro mention ALS, while discussing results, same day for any of you. Im wondering if its treated as urgent? If they suspected it would they not move fast? Kinda wondering why we are sitting once all tests are complete..

 

[Nikki J]

both my sister and I were told at the time of the emg. In my sister’s case she had had many tests and this was the last. She had family history / unknown gene status. I had had fewer tests but was a known mutation carrier.

it isn’t like most cancers where early treatment can be life or death.

if everything is done do you have a follow up scheduled to discuss? Also if the emg is non diagnostic sometimes the plan is to repeat it at a certain interval

 

[KarenNWendyn]

Hi Mon,
Only PALS and CALS can respond to you in this subforum. If you want to compare experiences with other undiagnosed people, you may do it through profile posts.

Keep in mind that what is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics. A normal EMG can rule out ALS, but an abnormal EMG can be abnormal for a zillion other reasons.

 

[Mon]

The neuro simply said see you in April to discuss whats next. There was no mention of ALS...only nerve damage.
I would hope a neuro would pass us over to specialist in field immediatley if he had suspicions.

 

[Mon]

Thanks very much for your replies. You guys have been such a helpful outlet. Much respect!