I am scared I have ALS! Please Help

[pager27]

Thanks guys, and Skipper, no I have never been on here in my life! Like ever! These twitching symptoms and stifness have only been around for a couple of months. 100 percent no. It must have been someone else. Thank you all for your information and help!

 

[pager27]

Thank you GregK and Max, I got it! I was looking on the wrong page for them lol

 

[bluedog]

pager, you have some symptoms that are consistent with ALS and many that are not. I think that your neurologist is doing a good job of providing you with the proper testing. To me, your overall story doesn't strike me as being very ALS-like, but I think that you are doing the right thing by getting it checked out.

You have two major things going for you:

1. You have a clean EMG.
2. Unlike just about everyone else that posts here and goes on to get ALS, you don't say anything about a history of excessive exercise.

To answer your EMG question, if you have done your homework, like you say, you by now know that a clean EMG means absolutely nothing in a symptomatic patient. If a clean EMG meant anything, anyone with a clean EMG would never have to undergo further testing for ALS.

Active denervation (fibs, sharp waves) can appear on EMG a few weeks or less after denervation starts. But it doesn't always appear, which is why the criteria was changed to give fasics the same significance as fibs in a muscle with chronic neurogenic changes. Chronic nerogenic change can take up to 4 months to appear. So in your case, since you have had the latest symptoms for only a few months, the EMG could have been done too early. But again, your story doesn't really jump out to me as being ALS.


Maybe post over at the BFS forum and see what they say.

Also, you could get another EMG in a few months to check for any progression. If that EMG is still clean, then you are that much further out of the woods regarding ALS. Clean EMGs over time and no further progression are really the only things that can make a person start to pull out of this worry cycle once the ALS worry sets in.

Regarding the stickies, I think that it is a good idea to have them. But to me, most of them seem irrelevant or provide misinformation. So I would stay away from them.

For example, the sticky about perceived weakness versus clinical weakness is irrelevant because a person can have perceived weakness and no clinical weakness and still have ALS. I wish that someone would take that one down and replace it with an essay on bird watching or something that is just as irrelevant to ALS but would at least be more interesting. There's also a sticky from a guy that says not to jump to conclusion about having MND like he did, and it turns out that he later has an MND. And then there is the other constant nonsense such as "ALS is about failing not feeling."

Lack of progression and clean EMGs are your only friend.

 

[pager27]

Hey Bluedog,

Thank you for your post. Are you still in the diagnosis stage? I hear what your saying and I actually mentioned that in an earlier post. I am getting much mixed info about EMG testing. Some say if it's clean you're good and others say that doesn't mean anything. I have been extremely nasaly as well. I have been trying nasal flush and flonase to help it but it keeps coming back everyday now. Between that and all my other symptoms I am deff nervous. Thank you so much for your input.

I have the clean EMG and no clincial weakness. I also have tingling which doesn't seem to be consistent with ALS. I have a left hand tremor as well. My symptoms are deff within the Parkinsons, ALS, MS ballpark, but I just don't know. I truthfully can't wait to meet with the psychiatrist, if for nothing else to treat my depression and anxiety. I am so over all of this. I hate living this way.

 

[Atsugi]

I'd like to semi-disagree with the notion I think I read in BlueDog's post.
I do understand that it's possible to have a clean EMG one year and then have a bad EMG and ALS the next year.
But I think someone might interpret that story and then go from EMG to EMG, "looking foward" kind of, for ALS.

I read and considered every symptom Page27 wrote and I didn't see any case for ALS.

I have entered some symptoms like twitches into google and it results in this website. Because so many people have complained of twitches, now google points people to this website. The webmaster should probably change the robots.txt setting to ensure that "I have twitches" doesn't automatically send people to think they have ALS.

Concerning rudeness, Pager27, many of us have different ideas. Consider first that the people who inhabit this forum are dying. We don't have time for beating around the bush. Some of us are very "coddling" and some of us are "rude" but we all contribute quite a lot to each other on the forum. Me, I prefer to be very straight up. Your time, your life, is wasted here.

You need to get off this forum and see the shrink. I wish you luck getting your life back together.

 

[Nikki J]

If Blue dog refers to Zaphoon as being later diagnosed with MND at last report he remained undiagnosed and I believe neuropathy was under consideration.
Bluedog at his last report does not have an ALS diagnosis from a neurologist,has had multiple EMGs and has seen multiple neurologists.
The stickies were constructed with care by PALS most of whom have now passed. The failing not feeling "nonsense" is the experience of many of us with ALS including me,my sister,my aunt etc....

 

[bluedog]

pager27,
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.

In my case, since my symptoms keep progressing and my EMGs are getting worse, I need to continue to get EMGs until they show enough to drop the hammer.

 

[bluedog]

Nikki, I actually think that your new sticky is good and helpful. I thought that Zaphoon took up residency in the PLS camp... my mistake.

Some people fail first, but many feel first with heaviness, stiffness, weakness feeling, numbness, burning muscles, tingling, etc.

I just think that speaking in absolutes such as its about failing not feeling spreads misinformation. Same with continually bringing up perceived vs clinical weakness.

 

[pager27]

I'm really sorry to hear that bluedog. I hope you make it through okay. That is so scary. I am also sorry if I offended anybody in anyway because that is not my intention. Atsugi raises a very sobering point. People on this forum are dying and I do not want to cause anybody any undue stres or aggravation. I just ask that some of you remember when you weren't sure, but you were sure enough that something in your body was very wrong. If it is not ALS in my case, GREAT! But I assure you all, something with me is very wrong here and I would hope that nobody dismiss my concerns.

Many of you have been very helpful and I appreciate your time and effort! As I said earlier, if I ruffled a few feathers, that was not my intention. I just want answers and don't really know where else to turn.

Thank you all! God bless blue dog! I truly do hope that everything works out for you. I will say a prayer for you.

 

[Mediasmart]

Not for nothing but how about a sticky dealing with writing entry's so overly long that I can't finish reading them before get too tired to hold my phone up. Honest to God if you have enough energy to write that much you don't have ALS.

 

[MaxEidswick]

>Honest to God if you have enough energy to write that much you don't have ALS.

roflmao!

 

[Dusty7]

Pager27, a little history on bluedog,
As his story begins, in a post entitled, “Any possible way this is not ALS?” he noted, “In 2002, I developed UMN symptoms/signs, including cramping, spasticity, heavy limbs, hyper reflexes, and clonus….” But he goes on to say in that 2013 post, “Normal clinical exam three weeks ago from ALS specialist.” So he could diagnose himself with lots of UMN signs, but his neuro couldn’t see any of them…

Go back and just read the posts in “Any possible way this is not ALS?,” before you decide to rely on his medical advice. And, remember, neuro after neuro after neuro and EMG after EMG after EMG, he’s still undiagnosed no matter what he sees as a sign of his ALS or PLS or bulbar ALS or whatever.

Recently, 03-31-2014, 02:09 PM, bluedog said,
"For a while now, when I sneeze, I get a lactic-acid-type muscle burn in my stomach muscles. It is the same type of muscle burn I get in my legs when climbing stairs. I'm assuming that this means my stomach muscles are weak. Has anyone experienced this or know about it?"

While this got a few, “Are you serious?” responses, it led to a follow up when Clearwater AL replied, "Bluedog... you have seen more Neurologists than 4 people with ALS put together have and all of them have told you... you don't have ALS - PLS - or any MND. After this Thread you just have started... please don't post advice to any other Threads from anyone else. As much as you have researched ALS hoping to achieve a diagnosis... you know better than to try this lactic-acid trip thing. Come on Bluedog... enough."

And on 03-31-2014, 06:38 PM, Nikki J added,
"I fear that you have worn out your welcome here Bluedog. I am sorry you have not been able to move on from this. I am closing this thread."

Pager27, bluedog has a history of providing misinformation in trying to sell everyone on his having ALS, but he could scare people who don’t know where he’s coming from. Because he can’t come up with a dirty EMG, EMGs mean nothing. Because he has no clinical weakness, he doesn’t believe clinical weakness means anything. Read his past posts and decide for yourself.

“If a clean EMG meant anything, anyone with a clean EMG would never have to undergo further testing for ALS.” Right, they don’t need further EMGs to look for ALS. Subsequent tests, including EMGs, are to look for a neuropathy, a radiculopathy, a tumor, or whatever is causing the problems.

“People that say if it's clean you're good are wrong. Period.”
And what is his source for this revolutionary bit of wisdom?

He adds, “And then there is the other constant nonsense such as "ALS is about failing not feeling."
As Nikki replied, “The failing not feeling "nonsense" is the experience of many of us with ALS including me, my sister, my aunt etc....” What experience or source does bluedog have to label Nikki’s actual experience as nonsense?

Read his old posts, please, and then you can decide what is nonsense…

 

[Dusty7]

Media and Max, sorry for the long post. I actually write in Word with lots and lots of rest breaks and then copy and paste them in...

 

[pager27]

Dusty,

Thank you so much for that information. Some of what bluedog was saying was definitely scaring me a bit. You really seem to know what you are talking about and I am truly sorry from the bottom of my heart that all of you are going through what you are. I am just so afraid and I really do have some serious symptoms. My foot is getting to the point where I can feel the twitches while my shoes are on. They began as an on and off thing, but now they are constant and gaining power.

I can understand that many of you are undoubtedly tired of hearing a bunch of wackos dreaming up what they think could be a deadly MND. I just want you to know that I am sincere in my fears and am well educated and although I suffer from anxiety, I am a far cry from crazy. I appreciate all of the time that you have taken to explain this bluedog situation to me. I am so very grateful to all of you. My heart hurts for those of you who are now without hope. By speaking to me and sharing your wisdom, you are a blessing me. I believe in my heart that God see's this and you will be rewarded. I am so happy that you have taken the time to share this information with me. Please accept my apology for the way I came off earlier. I am just upset about how I have been feeling and feel hurt when people don't seem to believe that what I am experiencing is rule. I assure you that it is. It may not be ALS and I pray to God that it isn't. But I do feel like something big is hapening in my body and I do not know how to handle it or what to do. I'm just so scared, Dusty.

God bless you all and thank you all so much for sharing your wisdom with me. You are all in my prayers.

-Ray

 

[pager27]

*real…

Sorry, it's late and I'm tired.