None of this makes sense

[Merepage]

I am having yet another EMG on Friday to try to understand what is happening to my body.

General feeling of not feeling well in Jan 2012. Lyme disease? Tested but not CDC positive.

Start with Neurology in Sept 2012. Stiff neck and Fasciculations start in my left calf Sept 2012. EMG done, clean. Still feeling terribly (like flu without a fever) and twitching more, but no clinical weakness and another EMG in Dec 2012 is clean.

I move onto ALS neurology visits from March 2013 - Sept 2014 with normal exam and 2 or 3 clean EMG's. Total of 5 normal EMGs from onset in 2012 through today

3 weeks ago..and this has slowly progressed since onset, perceived weakness increasing to me, but sort of showing on exam? "you are a little weak?".. 2 weeks ago, while still feeling increasingly worse for 3 years, I started with serious shortness of breath and serious "perceived?" weakness in both arms.

I wake up 10 times a night with ultra shallow breathing (not anxious) My reflexes have been 3+ since the beginning. Neurologist not alarmed, but I do have jaw jerk reflex now. The fatigue is literally unbearable. I cant walk across a room without sitting down.

I can walk on my heals and toes but its harder. My thumbs are not working like they used to when holding something or opening it. My CPK has been normal. No tongue fasciculations. No mention of muscle wasting but I know that my biceps are smaller due to lack of use

Any words of wisdom appreciated. I am simply are hot mess for this EMG on Friday. What else could this be? My ALS neuro specialist wont see me til March which is good because she is sure it is not ALS.

Can you get UMN well before LMN or do they usually present together? Can I rely on my EMG from Sept 2014 and somehow put my mind at ease with this fatigue? It keeps progressing (slowly but surely) How will this end?

Thank you for any input.

 

[Nikki J]

Yes you can have UMN first. That is why people with PLS which is pure UMN are generally not confirmed in their diagnosis for several years But what are your UMN findings? 3+ reflexes as you know are non specific and often normal. The jaw jerk? A one time isolated finding...
Have you had work ups other than neuro? Infectious disease and rheum? Pulmonary since you now have symptoms there?

Could your EMG change in 6 months? Certainly but given your symptoms have been there for so long to some degree and multiple previous EMGs were ok it seems less likely. If it is normal it seems like it is time to explore or revisit other disciplines besides neuro

Good luck

 

[skipper66]

I agree with Nikki. It looks like you need to go to a different type of doctor other then a neurologist because it looks like your in the clear there. Please ask your primary physician for some referrals. We can't help you because we aren't doctors and are a ALS support forum. We aren't dial a doc or anyone's diagnostic tool to figure out what is wrong with them other then ALS. Please kindly direct any further questions somewhere else. Thank you and good luck to you.

 

[Merepage]

Thank you for getting back to me.

The Jaw Jerk was found twice in my last 2 appts, but my local neuro. He was the first to test it. He said in the absence of other exam findings that it was not significant? The ALS neuro has never tested for it.

I have been on 65 dr appt of every specialist you can imagine over the past 3 years with no diagnosis. Rheum, Infectious disease.. you name it. MRI's, CT scans, hundreds of lab tests

Do you think that if Friday is normal (and I cant imagine how it will be), that after 3 years of this, it is and never will be ALS? That of course does not mean I cant get ALS in the future, but not related to current symptoms.

I am 53, have 4 boys and need a diagnosis..I continue to decline, with no answers.. Thanks for your feedback.

 

[Merepage]

I apologize for posting where maybe I should not. I have been to every specialist around and from everything I read this is Motor Neuron or Lyme disease.

After 3 years, I am just desperate for answers about ALS and ruling it out. Thanks

 

[skipper66]

If it were ALS that you had for the last 3 years you most likely would be in no shape to be on the internet right now and possibly even dead right now. I think you are going after a diagnosis that you absolutely aren't going to get. But, I'm sure your keep posting because you are what I refer to as one of the wantabees.

 

[Merepage]

Thanks Skipper. I hope that it cant progress this slowly. I totally understand that all these clean EMG's should steer me totally clear of here, but with the slow progression of fatigue and weakness and now SOB, I guess I'm still a candidate for PALS. I just want someone to say.. NO WAY that it is PALS or ALS.. and I know you cant do that. I'll let you know... Thanks again

 

[Nikki J]

It seems unlikely at this point. What do the neurologists say? When you see your ALS doctor in March it is time for a frank talk. It is hard to be one of those with an unclear neurological syndrome. It seems like there are several of you in this boat ( I am in touch with a couple who are not on this forum) maybe ask your neuro if s/he has seen other people similar to you And what happened? Could this be some kind of unusual sequelae to your small fiber neuropathy? Is there anything that needs to be (re) tested? Or is truly just wait and follow up?
Work on your list of questions. Refine it over and over. Think about what you want to know depending on possible answers. And ultimately print it out and hand it to the doctor at your appointment. I have found this works well and the doctor will refer back to it to be sure she answered everything ( though it needs to be quite short mine are usually max 3 topics each with a main question and then if needed subquestions)

 

[Merepage]

You are awesome Nikki. Thank you. Please say a prayer for Friday at noon. I have never felt this symptomatic and scared. Thanks for your support. You are all amazing!

 

[Nikki J]

I will indeed say a prayer

 

[monster]

I left you a visitor message. Good luck to you on Friday!

 

[Merepage]

Thanks for the messages. Normal Neuro exam and normal EMG today. Thank You God. Still struggling majorly with fatigue and shortness of breath but relieved. I pray for all of you often. Thank you for putting up with me

 

[Nikki J]

Awesome. Congratulations!

 

[monster]

A normal EMG and exam is very good news, congrats.

 

[Merepage]

Why can't I move on? I don't expect anyone to respond but... The increased shortness of breath, the fumbled speaking, can't sing loudly anymore, the weak neck, the weak jaw. How do I move on from pseudobulbar and UMN? It is still very possible that I am UMN only with all these symptoms..right? The EMG only clears the LMN. Sorry. Back to googling. Darn. I just feel too lousy too long. Thanks for reading