I am scared I have ALS! Please Help

[Kosmoskatten]

I did not say you quoted in relation to the original poster, I said it was out of context in relation to the discussion. A discussion about the relevancy of a clean EMG. And about clinical vs perceived weakness.

But this thread has now fully evolved into what I suspected you were aiming for bluedog; a discussion about your symptoms.

 

[Nikki J]

Your history is still utterly different than clinically possible ALS or bulbar palsy so it does not apply to you either. My EMG/ exam would have put me in clinically possible (fibs,positive sharp waves,motor neuron remodeling on EMG plus upper motor findings in one limb) however being documented gene positive FALS promoted me straight to clinically definite FALS

 

[pager27]

Not really trying to get involved with that argument situation. Real quick, if anyone would like to respond, along with the stifness, twitching, tremor, etc... I am having a real think congested nasaly feeling that feels like it is behind my nose in my throat. It is giving me breathing problems and sometimes causes me strain to speak. I know that it is allergy season but between that and the clinical respiratory problems as noted by my pulmonoligist, I'm wondering if this is cause for concern as it pertains to ALS. I am not ruling out anxiety for some of my symptoms, however, certain symptoms are not possibly anxiety related. This nasal thing is one of the. I have slurred speech which is on and off and my saliva gets really slimy and thick. Does this mean anything to anyone?

I do have that appt with a psych but it is a while away. I am just really concerned about a possible MND, even if not ALS. I am also concerned about Lyme, MS or Parkinsons.

Don't want to drag this on and really don't want to aggravate anybody, my breathing problems and congestion are very real, as are my fears. I have a prescription nasal spray and have been using a nasal flush but it is not working. The mucuous seems stuck back there and it is causing me extra trouble with my breathing and my speaking.

Thanks guys!

 

[pager27]

BTW, I see the purpose of those "stickies" now. They are very informative and I should not have been so quick to dismiss them.

Thank you so much to everyone who has responded to me.

 

[dalvin]

Anxiety can make the real symptoms worse

 

[pager27]

Well, we're gonna figure out if that's what it is soon. I am leaving no stone unturned here and am absolutely looking forward to seeing the psych. Anything that has the possibility of helping is something that I am willing to try. These symptoms are very real to me though and I can not for the life of me seem to get this mucous up and out of my throat and behind my nose. I've never had sinus congestion like this before. This is terrible and nothing I use is really helping to flush it out.

 

[pager27]

BTW, @bluedog: I am not against you and am not picking any sides at all. Truth be told, I would prefer not to be involved. I very much appreciate you reaching out to me and commenting on my post. The only thing I will say is that I can see how some of the members on here could have construed your message as insensitive and offensive. They have lost friends, family and loved ones and ripping apart stickies, some of which that had been written by members that are no longer with us can be very insulting. I would just encourage you as well as everyone else to choose their words with care. Nobody wants to hurt anybody and this is a site that is filled with enough hurt and pain as it is. Spread love, not hate.

I harbor no ill will toward you blue dog; NONE whatsoever. I appreciate your comments as well as everybody else's. I really do! I hope your situation turns out okay and I prayed for your last night as you were not yet diagnosed. I hope that it stays that way.

Chin up everyone and as a humble (suggestion) maybe we can just try to be kind to one another. Everybody is fighting their own battles and anybody that's on a forum like this, due to ALS, extreme anxiety or otherwise, is going through a rough time. I try my very best not to judge anyone.

You have all been so helpful and I feel blessed that you have taken the time to share some words of wisdom with me. I know that you don't have to and I appreciate you ALL!

I did ask one brief question a few posts back and if anybody cares to touch on that, I would love to hear any insight. If not, that's okay. I realize that this thread has been dragging out like crazy and it did kind of go where I'd hoped it wouldn't. I ask that you please dont hold that against me. This thing developed some legs of it's own and kind of took off lol.

Anyway, love to hear a quick response to last question. Thanks all!

God Bless

 

[Dusty7]

Bluedog, you say (directed at me), “I've had 5 dirty EMGs (your reading comprehension seems pretty bad).” I’m sorry; I haven’t been around the forum as long as you have, so perhaps you can fill me in…

When were your 5 dirty EMGs?
Did you mention these on earlier posts?
Which ones (EMG 1 thru 5) showed—
Fibrillations?
Insertional activity?
Fasciculations?
Long duration on MUPs?
High amplitude on MUPS?
Polyphasicity?
Reduced velocity on the NCS?

On each dirty EMG how many muscles tested abnormal?
How many tested normal?
How many paraspinals tested abnormal?
How many paraspinals tested normal?

It just seems to me with 5 dirty EMGs, the neuros should be able to see widespread, acute on chronic denervation. And they should be able to trace the denervation back to the nerve roots to rule out radiculopathies (or a poly radic). With 5 dirty EMGs, have the neuros told you what is still on the table besides ALS?

 

[Dusty7]

pager27, sorry your thread got hijacked.

I think your unanswered question was about the sinus congestion. I don’t think I have ever heard about that being a symptom of ALS. As I said early on, “Nothing you’ve said here makes me think it’s ALS.” I still feel that way. Could it be allergy related? Hey, I get anaphylaxis (of the throat swelling variety) from eating beef, so nothing really surprises me anymore. And stress makes allergic reactions trigger more easily and more severely. My hope is that yours is a combination of anxiety and maybe allergies. And, of course, the CTS. A wicked combination, but one that could be easily unraveled. (I’d trade you for that.) LOL. Good luck! Sorry for the strange entanglements of this string…

 

[bluedog]

Dusty, my friend, I mentioned the 5 dirty EMGs on page 3 in the sentence before the sentence of mine that you quoted.

"I'm still undiagnosed. Had 2 normal EMGs within a few months of limb symptoms and 5 abnormal ones starting at 6 months out. People that say if it's clean you're good are wrong. Period."

This was just today, so I know that you were around the forum then :>

I don't mean to bust your chops and think that you do truly try to help people. And I usually don't retaliate when attacked but I'm sensing a diagnosis in the wings soon and am a little on edge these days. I hope things are going OK with you.

To answer your questions:

The 5 dirty EMGs were from July 2013 through March 2014. No Fibriilations or insertional activity on any of the EMGs. Fasiculations in one calf muscle on one of the EMGs. No mention of long duration MUPs. Some polyphasic MUPs. High amplitude MUPs in all muscles tested during last EMG. None normal. No paraspinals tested. I haven't had an NCS during the last 5 EMGs because they were normal in the past and the abnormalities are in the EMG.

The neuros see widespread chronic denervation but no active denervation. No neuro has ever said that anything is on the table, including ALS. At my last appointment at an ALS clinic two weeks ago, the neuro said that he is 100% sure that I don't have ALS. The worse my EMGs get, and the weaker I get, and the more atrophy I get, the more certain they are that I don't have ALS.

 

[Nikki J]

Pager I too apologize for your thread getting hijacked. I wish you luck for your appointment and agree that the respiratory symptoms sound non neurological. Hope you find answers soon

 

[Clearwater AL]

Ok Bluedog, we've had our exchanges, all aside... if the Neurologists at the ALS Clinic are 100% sure you do not have ALS... what do you think the diagnosis "in the wings" is going to be? You are very knowledgeable in this Neuro arena and I give that consideration so again, what do think (what's your hunch) your diagnosis will be?

 

[Dusty7]

Bluedog, I am happy that you don't have ALS. 7 EMGs in a row without any fibs or insertional activity is certainly proof enough for someone as knowledgeable as you that without active denervation, there is no ALS. If you have measurable atrophy, something is wrong. Let the neuros figure out what it is.

 

[Kosmoskatten]

Bluedog, I actually took the time to read through all of your old posts.

You have such an array of symptoms, and can see see through the lines of your posts that you are frustrated.

When reading one of your posts you say;
"I've been to 6 ALS clinics, including Mayo, Cedars Sinai, and Barrow. They all say 99% sure no ALS."

These are a lot of top notch facilities, they have all done thorough EMG:s, and they all say that it isn't ALS. I can relate to the feeling of wanting to be diagnosed, but if all of your clinical vistits lead up to the same answer, no ALS, why not take that in and look in another direction?

Is your atrophy confirmed by your neurologists? Then surely they must be looking in some direction. And with the resources you seem to have, I am fairly sure you will get your answers.

And, Pager, I agree, one should think about being kind. But this forum is supported by its members, people who suffer from ALS. Being in the diagnostic process myself, I try to be patient when I see the stress of awaiting a possible diagnoses. But when the going gets rough on the people that contribute and contributed to this forum, took the time and effort to write stickys and/or enumerous replies to different DIHALS-threads. That is where I put my foot down at least.

And that would be the end of a specifically active forum day for me. I hope you two both get answers in due time.

 

[pager27]

Thank you guys! Lol, Dusty….
No worries about the hijacking thing. It happens.
And Kosmoskatten, I agree and understand.
Thank you too, Al and Nikki and anybody I'm forgetting here. You've all been great.
I will keep you guys posted w/ updates after psych visit and future neuro info. I hope to God that you guys are right and it is not this horrible disease. You guys will all be in my thoughts and prayers. Please keep your heads up. I know how hard that is to do, but I wish you all very well from the bottom of my heart.
Thank you @bluedog too! At least for your initial response to me. Good luck to you! @Max…Thank you too!

Please if I am forgetting anyone, know that it was an accident. Chin up all! Speak to you guys when soon!