Recent EMG was good

[CB1977]

I had my EMG this week. It has been a year since my first EMG and 6 months since my last EMG.It has been 15-17 months since my first noticable symptom (lower back stiffness and soreness) and a year since my muscle twitches began (8 months since they became global). It has also been 5 months since the ENT diagnosed me with vocal fold atrophy (which I am still able to speak fine except for soreness under my jaw which is the base of my tongue being fatigued.)

Nothing was abnormal except facics in leg muscles. He did legs (which to me look considerable smaller), arm, hand (thenar muscle which is sore whenever I use my hands alot), back, neck, and tongue. The neuro said that at this point if I ended up with ALS/MND he would write a case study on it because it would be such an unusual presentation. He said the he is very confident that ALS/MND is not what is going on based on the EMG results and the amount of time that has lapsed since my symptoms began and this EMG being done. He said that he thinks we have passed a point where we can pretty safely say that ALS is not in the picture. This has put my mind at ease about ALS/MND.

So, I am satisfied that I dont have MND, my mind is at ease. I am going to continue to pursue an awnser although I am going to let ALS go and focus all my efforts on autoimmune and metobolic until I get a definative awnser. Whatever I have is progressing so it is imperative that some causes are found. I am going to hang around here, and continue to give updates on my progress and also keep tabs on everyone elses progress. Thank-you for your support, it has helped me keep it together more than you can imagine.

CB

 

[Zaphoon]

CB,

Congratulations on the clean EMG!

Zaphoon

 

[Al]

Congratulations CB. A no ALS diagnosed is as good as winning the lottery. Even though you may still have something else it probably won't kill you. Feel free to keep us updated. Whatever they find may help others looking for a diagnosis.

AL.

 

[hopingforcure]

Congrats, and good luck, like Al said many are in the same boat as you are, and it will be a service to many for any info you receive. Here is hoping they will soon find out what is ailing you, and get you on your way to recovery. We are here when you need us..

 

[crystalkk]

Congrats!

 

[planningguy]

Yeah! Great news!

 

[AndyDJX]

Congrats CB1977. Hearing this gives me some renewed hope.

 

[lydia]

Congrats CB-

Lydia

 

[CB1977]

I just want to say thank-you to everyone for the congrats. Whatever IS wrong with me is picking up in progression. Its certainly getting scary. I am having breathing issues when laying down all the time now. There is a spot just under my left sholder blade that hurts 24/7 for the last 7 months. Its like a ball of muscle that is always cramping up. I have a bunch of other issues as well. My neck and back muscles are constantly in pain (sore) and I can feel those muscles shaking slightly (like they are wore out). I also have constant tremors in my hands when holding them over my keyboard (these are worse than the natural tremor that most people have).

Here is something really weird- I went to the gym, did a light workout. After the workout, if I tried to curl my wrist up, my hand will shake really really bad. This has never happened to me before and was very alarming. So- clean EMG which is great but still getting worse and I am wondering how long till I cant do the things that are normal (walk, type, ect.) since the progression seems to be speeding up. ANyone have any suggestions on what my next move is or ideas on what type of Dr to see, my neuro says dont do ANYTHING for the next 6 months, should I just wait and see how bad I get?

 

[CB1977]

So I had a follow up with my neuro. My palm on the same side as my pinky has some strange dips forming in it. My neuro looked at them and said they look like "atrophied striations" but he couldn’t be sure. When I asked him how this could be when I just had an EMG a little over a month ago (and he tested this hand) he said he didn’t really know. He said it should show on the EMG. So- With fatigue, muscle twitching, vocal fold atrophy, now possible hand atrophy, muscle twitching, horse voice, muscle soreness after exertion, I am wondering if the picture that is being painted can really be denied? All my hopes are hanging on this clean EMG which didn’t pick up what the neuro admits looks like atrophy and I cant get a real explanation as to how that could be. My logical conclusion is that the EMG was incorrect or the neuro doesn’t know how to work it because the atrophy is obvious.

 

[Landau]

do you have major weakness too?
w/o major weakness, you can probably X ALS out, right?
in the spots where I have atrophy, I'm incredibly weak. Weakness is progressing. Back muscle, right under shoulder blade, going.
1 Neuro said maybe MND. So. There ya go.
Hope you don't. Good luck.

 

[lydia]

CB, I know you are scared by this. Remember we have similar issues. I had two neuro confirmed locations of so-called atrophy BEFORE my EMG a year ago, and my EMG was normal. My "atrophy" hasn't changed that much (but some!) despite my constant staring at it (perhaps if I look away...a watched pot never boils...) and now I doubt it was ever atrophy to begin with. I don't know...I think mild or early atrophy is hard to declare by laymen and neuro's alike. Regardless, my point is that you can have ALL the scary signs of what seems to scream MND and then it is still NOT MND...What does your neuro want to do? I am sorry I don't remember, did he do your EMG, and if so, is he some kind of pro at it? How does that hand work? Have you noticed any issues with it?

Lydia

 

[rom623]

cb1977,
Have you pursued metabolic doctors yet? I spoke with a rheumatologist for the first time the other day, and he mentioned a "big three" of neurology, rheumatology, and metabolic. There seem to be a number of metabolic and cellular issues that cause widespread issues. That's where I may head next.

 

[BethU]

CB ... congrats on your EMG, but I'm sorry you are still in limbo. With your symptoms, it's understandable to worry and wonder, but worrying and wondering about ALS would seem to be a dead end at this point. The symptoms you list do not add up to the criteria for an ALS diagnosed. No matter how you paint that picture, if you don't meet the criteria for ALS, there is nothing your neuro can do about it. ... except wait and see what happens.

There is a sticky on the forum with the criteria listed. Meanwhile your statement in the first post on this thread sounds like a good idea to me: I am going to let ALS go and focus all my efforts on autoimmune and metobolic until I get a definative awnser.

We've all been following your story and wishing you well. I hope you can let go of ALS and concentrate on having a great summer with your family. If you must obsess about all this, investigate other possibilities.

 

[CB1977]

Landau- I dont have incredible weakness but I do have weakness. Specifically gripping with my pinky and ring finger. The atrophy I have is in the beginning stages. As far as the vocal fold weakness, I find myself losing my voice for a second in the middle of talking every now and then. I am sure its related. I have a follow up with the ENT this week and they will be able to tell if it has progressed.

Rom623- I have been seeing a rheumatologist, nothing has come up yet abnormal. One problem I am having is figuring out GOOD doctors to go to. My neuros dont refer me to other departments? They always just say, lets wait and see so I am doing all the searching. If it is not MND, I dont want to wait and see and have unneccesary damage done.

Beth- Thanks for the response. I do understand the criteria for getting and ALS diagnosed and I know that it requires a dirty EMG, and I dont want this at all. My symtpoms do really match up with ALS, general fatigue, muscle knots in back, soreness, muscle twitching, muscle atrophy, weakness (not clinical), these are all ALS symptoms (granted they are symtpoms of other things as well). Also- Being only 31 I am wondering if I have an atypical presentation due to having such a high baseline (I have always been in really good shape) and maybe it is just moving very slow. I am also very in tune with my body so maybe I just noticed the suttle changes earlier than most. I had let ALS go after my last EMG (even though I had noticed the hand issues before that) but with visiable progressing atrophy now in the picture I am starting to panic. Will it get worse? How bad will it get? Where on my body will it strike next? I am still enjoying life, but it is very hard to shut this out totally. Even if I dont focus on MND, I am still focused on these other questions which are very scary to me as well. I will keep everyone posted. Thanks for the support, advice, and feedback.