Going on 18 months with symptoms no diagnosis

I have hypoglossal nerve palsy, fasiculations in tongue at all times..hyperreflexia. slurred and garbled speech off and on
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Have seen 2 neurologists..have had 2 mri, 2 nerve conduction tests, 2 muscle tests ( can't think of name) , book tests, CT scan....I have crampy twitching legs at night and what feels like fasiculations...my neurologist says people are diagnosed with als within about 14 months s... he hasn't given me any diagnosis..I'm anxious because there is definitely something wrong but they have ruled out everything else..so my question is can progression be that slow for some people ? Can u get diagnosedone with als after 18 or even 24 months?

Mod note: Moved post into the "Do I Have ALS" section.

Past thread is here for more background: https://www.alsforums.com/forum/showthread.php?t=42751

Did your nerve and muscle tests include an EMG (electromyogram)? That is the test that is most helpful when it comes to diagnosing ALS. If you had an EMG, it would be most helpful if you could post the results and conclusions (blocking out your name for privacy).

Diagnosing ALS requires finding documented clinical weakness and/ or characteristic EMG changes in at least 3 different regions of the body (arms, legs, thorax, bulbar), plus upper motor neuron signs (hyper reflexes, clonus, etc.), as well as ruling out conditions which mimic ALS and documenting progression over time. If you have changes only in one area, a neurologist might be hesitant to give you a diagnosis but might want to monitor you over time.

If it has been several months since you have seen a neurologist and you feel there has been a progression in your symptoms, then it would be reasonable for you to return to the neurologist for a recheck. Ask them what conditions they might be considering, if not ALS, and what your next steps might be. If you haven’t seen a neuromuscular specialist, that would be advisable.

Sometimes ALS can take over a year to diagnose, especially if it is slow progressing or has an atypical presentation. But keep working with your neurologist(s).

If you are worried about the time it is taking, I was most of 3 years getting poked and prodded and spent enough time in MRI machines they have a coffee cup with my name on it in the waiting room. This is a difficult disease to diagnose and doctors are extremely hesitant to even say the words Amyotrophic Lateral Sclerosis, let alone diagnose someone with it. If there is any lesson in this disease it is patience. I wish you luck.
Vincent

Thank u so much..it's hard not knowing..sometimes I feel like I'm going crazy..how do I make friends on here?? I am new to a forum

It is hard and scary knowing something is wrong and not having a diagnosis. I’m sure at least one of the neurologists you saw did an EMG if they had any concerns about ALS. What did your EMG show and what have they told you so far? We’re always happy to take a look at your EMG and give you some input if you can post the results.

As far as “making friends” on here....

The main purpose of this forum is to provide support for people diagnosed with ALS and for their families and caregivers. It is really not set up to be a social media site for people wondering if they might have ALS.

That said, we’re happy to try to answer a few questions. You may also post visitor messages on the profile pages of other DIHALS. Otherwise we ask that you stay in your own thread.

Ok..I'm sorry. I don't understand the forum fomat..I will see if someone in my dreams office can explain..I have had 2 emg..I didn't know I could get a copy

I'm sorry to ask another question.my name is lisa.
I have both upper and lower motor neuron symptoms..is there any other diseases with both?

Mod note- moved post to already open thread. Please continue posting here. Thank you.

What does your neurologist say, and what did your EMG show? Feel free to post a copy of your EMG with identifying information removed.

KarenNWendyn said:

What does your neurologist say, and what did your EMG show? Feel free to post a copy of your EMG with identifying information removed.

Click to expand...

I don't have a copy..they tell me it's a concern but not definite on als diagnosis..it's a wait and see..

You are entitled to receive a copy if you ask.
So I assume you have followup with your neurologist? Those would be good questions to ask them.

KarenNWendyn said:

You are entitled to receive a copy if you ask.
So I assume you have followup with your neurologist? Those would be good questions to ask them.

Click to expand...

I will do that..I see him every 3 months now unless I have a new symptom. Thank u for answering..I appreciate it..I try not to b scared..I'm definitely confused and frustrated

One more question. If I may..what do muscle fasiculations feel like?? Mine feel like it does when I was pregnant,,,,like a little hand or fist pushing out..no pain...always popping up in different locations..mostly calves and ankles..sometimes feels like a rippling

That term (fasciculations) is not specific to ALS, and most are benign, as you know.

Until we have more objective evidence to go on, such as your de-identified EMGs, I don't think we can shed any more light. Please don't post any more symptoms pending that.

You have the right/obligation to ask what else is still on the table, and the timing of any planned diagnostic tests.