Update - 2nd Abnormal EMG

[lollypop]

Hi folks,
I did try go back and post in my original thread (took some searching) but its been closed. Decided to give an update and ask some questions, if I may. Maybe someone was following my story

Anyway, I've since been to my second neurologist, a neuromuscular specialist in Manhattan (at a teaching hospital). My first visit included a clinical exam (deep tendon reflexes again hyper, Babinski neither positive or negative) at which point she ordered a battery of exotic blood test (all came back normal, to my disappointment) and a further EMG of my legs (and also my arms - as at that point, my symptoms had spread). She indicated at that appointment that she did not agree with the impression of the previous EMG, that it was radiculopathy. The MRI of my lumbar spine she said didn't support it (which I had already figured out myself) and 6 weeks of PT did nothing for me. She thought given the timeline of what I had described that maybe what I was experiencing was Post Viral Syndrome.

Back I went for my EMG/NCS. The NCS was performed by a technician. The neuro herself performed the EMG. She inserted the needle on only my right leg (previously "abnormal") and my left arm. Not sure why only left arm (but it is actually worse than the right). Afterwards she said there is still "abnormalities in my right leg and now also in left hand/arm". She still seemed to think this might be "post viral" but wants me to come back beginning of September for further follow up, or before then "if I get worse".

I didn't ask for a print out of the second EMG. I didn't want to torment myself. My right leg "discomfort" has been ongoing since April now". Its getting worse, slowly, but getting worse nonetheless. I'm reluctant to describe a "feeling" since apparently "feelings" don't come into ALS, but its constantly tight. What started out as just tightness in the lower part of the leg is now moving up the leg as well. Then mid July, same "feeling" appeared in my left forearm. The muscle between my thumb and index finger on left side also "feels" weird. Can still make ok sign, click fingers, move side to side etc., but something's not right (as backed up by EMG). I wake up in the morning and have the feeling they may not even work that day (my hands that is). I've got widespread twitches at this point. What started out in just my right leg are now both legs, visible in the palms of my hands and front of hands, my neck, my trunk, the works! The fatigue is truly awful at times. As a little aside, my PCP sent me for x-ray of my pelvis, and apparently there's some oesthoartirts there (which he is sending me to a rheumatologist for as he thinks it odd at my age).

I never asked either neuro "Do I have ALS" or "Is this ALS"?. Maybe I should, but I'm pretty terrified. My questions:
*Should I get a copy of the second EMG report? Or wait to discuss at follow up?
*How unusual is it for symptoms to go from right leg to left hand?
*If the "discomfort" in my right leg started in April, should I be showing more signs of weakness there (i.e. falling) by now?
*Has anyone heard of two abnormal EMG's being caused by "Post Viral Syndrome"
*Any ideas on what else it could be, or opinions on how likely it is that this turns out to be ALS? I fully accept you cant diagnose me over the internet, but is this fact pattern ringing any bells?
*Do I try just live life (as what can I do about it anyway) until something just "stops working" or try push harder to get a diagnosis and put on some medication that may prolong my life in a worst case scenario diagnosis?

I so wish I was like so many others on the DIHALS threads - who get clean EMG's. I'd be long gong if that was my reality. But here I am now with my second abnormal one. And a neuromuscular specialist who disagrees with my initial neuros diagnosis and seems to be in "lets wait and see" mode. I really hate to bug you all with these questions and I've taken up your time with my rambling on already. Any reply is so very much appreciated. Thank you,

L

 

[Nikki J]

We would be purely speculating without knowing the specifics of the EMG ( we still could not pretend to diagnose you with results of course). Abnormal could be anything. There are EMG abnormalities that are quite clearly not ALS ones that are consistent with ALS and everywhere in between. Your choice whether to ask for the report and then wait to have your visit or just go to the visit.
Leg to opposite hand is very unusual. Spread is usually leg to leg or leg to arm on the same side. Probably not impossible but not usual initial progression.

I don't think anyone can predict progression in confirmed ALS so can't answer timing when your diagnosis is unknown.

Yes post viral syndrome can affect an emg

See above we should not speculate

I don't know what you should do. Sometimes an emg is equivocal and you just have to wait and see. There is not always a quick answer in neurology. It sounds like you were given an interval but can call if something progresses. This is a second opinion from a neuromuscular specialist. If you feel it was careless then you need a doctor you can trust but consider MAYBE the answer is not there yet

 

[KimT]

I'm so sorry you're in diagnostic limbo but, as Nikki said, this is quite common in neurology.

I always get copies of every test unless they are loaded in the medical portal, which is now quite common. If you decide to go to another doctor, my advice is to have all your medical records in hand.

 

[lgelb]

If you are on here asking all these questions, some of which can be answered by the 2nd EMG and encounter notes, I say download it rather than shadow-box. You can't have it both ways. Do you want to know more, as opposed to speculate more, or not?

Yes, even with ALS, we say live as you want until you can't.

No perceived weakness apart from feeling that you might be weak in the morning says rheumatological or endocrine disease is a possibility, so glad you are seeking a rheumie. Widespread twitching and generalized fatigue over a few months without weakness also argues against ALS.

Keep us posted.

Best,
Laurie

 

[lollypop]

Nikki, Kim, Laurie, thank you all.

I'm not looking to go to a third neuro, for now. The second one I attended, I intend to keep. She's a neuromuscular specialist (unlike the first), highly trained and well regarded. I feel in much better hands than I was previously. This Dr. is not much of a talker, but neither am I. When I do ask questions she listens, doesn't dismiss them, but as you have pointed out, maybe my answers aren't available yet.

I've decided I'll get the copy of the latest EMG, but not until a couple of days before my next appointment in September. I know I'll analyze it in detail like I did the last and I don't want that hanging over me for the next month. I'll get it before next appointment so as to be prepared to ask the tough questions. I'm just going to try and enjoy August as much as I can.

Thank you all, again.

L

 

[Lkaibel]

Yes, you definitely need to know the EMG details. You do need those tests results, in detail.

Overall though I have to say the number one reported first sign of ALS is an inability to do something. No pain, usually and no explanation. You try to raise your toes, not happening. Your ankle fails when you stoop down, no feeling involved and no known reason.

Without failure like that, without noted clinical weakness as a non Doctor of course I am just going to guess ALS is not suspected here. Mind you I am not a Doctor, and could have missed something in your story.