Neurologist says that she is pretty certain that I have ALS

[Linda888]

I've been falling due to foot drop, lack of balance, and leg weakness for about 18 months. It started slowly and got worse, and I didn't even realize that there was foot dropping until a couple months ago. I also started slurring my words about 2 months ago, which I thought started because I've hit my head multiple times from falling, or because maybe I have multiple sclerosis. I have felt water drops on my skin about twice a month for the past 2 months also (when no water is there).

I saw 2 doctors who mentioned MS and referred me to this neurologist. I was shocked when she said ALS. I was kind of ready to hear an MS diagnosis, but not ALS. She has me set up to get an EMG nerve test but it's not until Dec 19 (today is November 8).

She was so certain and matter of fact about the ALS, saying my speech sounds just like someone who would have ALS. She also said that MS comes on suddenly, and since I've been having symptoms for at least 18 months that it is likely not MS. Additionally she said that the way I was coughing (getting over a cold) in a weak manner is typical of someone with ALS.

I have no twitching though. She did all the strength and balance checks. I feel like maybe she's wrong, especially since we won't know for sure until after the EMG is done. Why would she give me this devastating news before she has the EMG to prove it? Can a doctor be this intuitive to just be like, yup, I know it when I see it. There are so many overlapping symptoms with MS. I'm getting a second opinion from a different neurologist next week, but in the meantime I'm seriously not doing well emotionally and I haven't gone to work for 2 days.

 

[Nikki J]

I am very sorry. It is a terrible shock to be told like this. See if there is a cancellation list for the emg. You need one asap to get answers

What you describe does sound worrying and lack of twitching is not enough to rule out ALS. Also many of us have visible twotching we don’t feel

It is hard to judge how you should compare the opinions of the doctors you have so far seen. We don’t know their credentials and we haven’t seen you. We have had people misdiagnosed before. Your original neurologists sent you to this person so they probably have a specialty within neurology. What is it? And what are the credentials of the next neurologist? I ask because all neurologists are not equal.

This is very difficult for you whatever happens next. Call your pcp and see if they can organize some emergency counseling and or meds.

 

[Linda888]

Thank you. Originally my PCP sent me to a spine doctor who did MRI's of my neck and spine and said that it's not my spine. Then I got a second opinion from a different spine doctor who said the same thing. So my PCP referred me to the neurologist (the one I saw yesterday). I think she is just a general neurologist.

 

[Nikki J]

Ah I misunderstood. I would try to get an appointment with a neuromuscular specialist. An ALS specialist at an established ALS clinic if at all possible. OSU has a great clinic. You may need to get the emg first but I would ask the neurologist or failing that your pcp to try to help you get to OSU if they balk at your call Amyotrophic Lateral Sclerosis (ALS) | Ohio State Medical Center

 

[Linda888]

Thank you Nikki. I appreciate that information. I'm going to call my PCP (who is also at Ohio State) and tell her about the ALS convo that the neuro had with me. I need to get on that. This morning I have been laying in bed crying and being depressed and wasting time. It's already 1:00 and I have nothing to show for it. I *have* to go to work on Monday (I'm an elementary teacher). I already had to take too many days or half days this year because of the falling and also my son has all these appts because he has quadriplegic cerebral palsy and he got sick, which is a whole thing.

 

[Nikki J]

Oh good your pcp is in the system. Yes call and get things rolling. It is understandable that you have been distraught but taking action will make you feel a little better. Keep us posted