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Karin Joy

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Hello Al and Wright -

Thank you for your replies on the Thyroid and ALS questions I had. Al I am just very scared due to the fact that a Doctor told me I had ALS, and I have been to two neurologists and have been given the clear.

These new symptoms just have me really worried - I have read on here that people have had clean EMG's and then later diagnosed with ALS - which is my fear. I have had relentless twitching in the left leg now for a few weeks, and it definely feels weak, as well as my left arm. Usually, my symptoms will go away for awhile - but this time no go. I just have two little ones, and if I have something life threatning - I want to try and be here for as long as I can. My husband just lost his mother - I don't think he can take much more.:cry:

Do yuo think I should go back to the Neuros?
 

wright

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Hello Karin

I just read your first post again and saw that your endo referred you to a rheumatologist after he said you have ALS. He sounds like a complete moron.
He says you have ALS based on perceived weakness of your leg and arm and some twitching? Does this guy know a thing about ALS? My guess . . . and actually . . . it isn't a guess . . . he knows NOTHING about ALS. He is in absolutely no position to give you any kind of diagnosis, especially based on your symptoms.
You had a neuro at an ALS clinic tell you that you don't have ALS. Feel good about that.
 

wright

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That thread was already posted on here by AHands . . . and if you READ IT CAREFULLY, those people that had clean EMG's were upper motor neuron onset ALS and didn't show lower motor signs until much later . . . or . . . have been diagnosed with PLS. Upper motor neuron signs DO NOT show up on an EMG, which is why they had clean EMG's.

From what I remember Karin, you have lower motor signs. Now if the EMG is done very early (no muscle atrophy yet, for example), there is a slight chance something can be missed . . . but again . . . that is very rare.
 

MtPockets

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Hello Karin

I just read your first post again and saw that your endo referred you to a rheumatologist after he said you have ALS. He sounds like a complete moron.
He says you have ALS based on perceived weakness of your leg and arm and some twitching? Does this guy know a thing about ALS? My guess . . . and actually . . . it isn't a guess . . . he knows NOTHING about ALS. He is in absolutely no position to give you any kind of diagnosis, especially based on your symptoms.
You had a neuro at an ALS clinic tell you that you don't have ALS. Feel good about that.
But you are?

Karin Joy,
Just another viewpoint for your consideration:

I understand your concern and worry about these symptoms. You said you have another EMG scheduled for the 28th. I would just relax, and wait for a professional opinion and the results from the tests. Also when you go see the Doctor ask him about the CK levels and how they relate to what may be going on in your body.

The higher levels you mentioned before are an indicator of possible muscle tissue damage. What is causing it? Only your Doctor can answer that one based on the test results. He may want to follow that up with another Ck test to see if the levels have changed.

My Doctor explained high CK levels to me that the muscles were spasming, and the muscle tissue rubbed against itself, sluffing off muscle tissue that went into the blood stream, thereby causing my CK levels to go up. I know that is in layman's terms, but that is how he explained it to me. Way before anyone even suspected I might have ALS, I was battling high CK levels.

I wanted to explain this to you, not to scare you, but to remind you to be sure to bring this to the Doctors attention. Sometimes, it helps to make a list of things before going to the Doctor so that we do not forget to discuss some things.
 

wright

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Captain Al, I didn't diagnose her. All I stated is that a neuro at an ALS clinic (someone who can diagnose her) told her there was no evidence of MND . . . and that her endo declared she had ALS based on twitching and weakness, which is completely absurd . . . that's all.
I also responded to that thread (from another forum) that Lori posted which was all about "real people" getting clean EMG's and then being diagnosed with ALS. If people would bother to read it carefully, it would have been blatantly obvious that those clean EMG's came from people who had upper motor neuron dominant / onset ALS . . . or . . . were subsequently diagnosed with PLS. Upper motor neuron signs DO NOT show-up on EMG's, which is why they were clean. So I was simply trying to alleviate fears that thread would have needlessly created.
 

ZenArcher

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I don't even know where to begin here.

First to Karin a primary care physician cannot diagnose ALS period. Two neuros have given you the clear. What does that mean? It means that right now you don't have ALS. Does that mean you'll never get it....nope. However you could also get E-coli from poorly packaged salads, or fall down the stairs or be hit by lightning. You have a choice worry about what might happen until you make yourself sick or live your life.

wright, who exactly do you think you are? You accuse her doctors of being morons and incapable of diagnosing her problems. Please enlighten us on this individuals credentials and experience as you must obviously have indepth knowledge of their career to make such a claim against them personally and professionally.

You then go on to recommend that Lorie read that posting carefully stating that they were diagnosed with this and that. Here's a quote from that specific post:
However, along with my other clinical findings it was definite ALS diagnosis.
You then state the UMN signs don't show on an EMG. Well riddle me this one then Batman, why do psuedobulbar symptoms show on an EMG since they are upper motor neuron lesions. Then you spout this crap about early EMG (i.e. prior to muscle atrophy) possibly missing something. What the hell are you talking about? Those abnormalities in the EMG are what cause the muscle atrophy so please explain to me how an EMG prior to atrophy is early?

and that her endo declared she had ALS based on twitching and weakness, which is completely absurd

Here's another quote from the National Institute of Neurological Disorders and Stroke:
The onset of ALS may be so subtle that the symptoms are frequently overlooked. The earliest symptoms may include twitching, cramping, or stiffness of muscles; muscle weakness affecting an arm or a leg; slurred and nasal speech; or difficulty chewing or swallowing. These general complaints then develop into more obvious weakness or atrophy that may cause a physician to suspect ALS.

I'm sure this doctor was just a fool and didn't look at all for things like clonus or weakness.

I find it rather ironic that the reason you became interested in ALS is because you misdiagnosed yourself but now feel knowledgeable enough to insult and contradict medical professionals who have been trained in the field. You want to alleviate fears then tell people to find a doctor they trust and listen to them instead of making statements you have neither the training, experience or ability to make face to face let alone across a forum.
 

MtPockets

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I give up. You win Mr. Wright.
Bye, End of my comments.
 

wright

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To Jeff

I guess you're having another bad day, huh. I'll take your points in order.

1) Her endo diagnosed her with ALS based on the fact she has perceived weakness and some twitching. No EMG performed or any other test. That's why I feel he is a moron. She went to an ALS doc and was told there is no evidence she has ALS, which I also went on to state and he/she did perform an EMG . . . and she shows lower motor signs, so I told her to feel good about that.

2) The only time pseudobulbar palsy will show-up on EMG is if it spreads to extrabulbar sites . . . but that's it. UMN signs do not show-up on EMG, because those neurons do not have projections to our muscles. I would think as educated as you are, Jeff . . . you'd know that. Those signs are diagnosed clinically. Go back and read the thread that Lorie put up and they even state that in a few of posts . . . or go ask your neuro; he or she will tell you . . . or go read a few EMG journal articles. If you need help interpretting them, I'd be more than happy to help you.

3) If someone does indeed have ALS and they are in the early stages of the disease, not every muscle may be affected, so if someone doing an EMG stuck those muscles, then it would be clean. Is that good enough for you Robin? I got that from reading journal articles on EMG and talking to three ALS neuros.

4) I misdiagnosed myself based on a lack of knowledge. I then made it a point to educate myself and have put an incredible amount of time and have had lengthy discussions with three ALS neuros. Am I an expert . . . hell no . . . but I don't claim to be. I have not diagnosed one person on this forum. All I have done is give people alternative points of view so they don't make themselves sick with worry. I always tell them to go to a good neuro to get that diagnosis.

If you want to discuss this further, then PM and I'll be more than happy to debate any subject you find the need to discuss.
 

sharonca

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Anyone ready to vote?

I'm with Jeff.

Sharonca
 

hardy42

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You're with Jeff? Based on what? He clearly won that debate. Wright is here trying to help, not that Jeff isn't, but what the heck. Wright didn't do anything wrong and if he did, could someone tell me what exactly it was. He is probably one of the few people who has come to this forum and not been diagnosed with ALS and chose to stay. Doesn't that count for anything?
 

ZenArcher

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I'm having a bad day? Would that be because I disagree with your internet diagnoses or because I spoke up? You know nothing about me so please don't make assumptions about either my mood or character.

1) My doctor diagnosed me with possible ALS without an EMG so he must be a moron as well. Oh wait, he was correct. Please show me where it says no other tests were performed by her doctor I didn't see that. Also please explain what is required for a diagnosis of possible ALS. Wait don't bother we've already made the assumption that no other tests were done because the doctor in a moron as you say.

2) I suppose the rest of the neurological community is incorrect then because bulbar symptoms are due to UMN lesions and can be found in an EMG.

3) Please feel free to define for me the requirements to diagnose ALS because if they have ALS which we all know is diagnosed by exclusion then 3 areas will show abnormalities. I learned that from getting needles stuck in me on multiple occasions by ALS neuros.

4) Yup that's all you do
It sounds like you have allergies.

However, I'm fairly confident you are going to be fine.

He sounds like a complete moron.

Does this guy know a thing about ALS? My guess . . . and actually . . . it isn't a guess . . . he knows NOTHING about ALS. He is in absolutely no position to give you any kind of diagnosis, especially based on your symptoms.

There is no way that one session like that is going to cause a pathological condition like ALS.

I'm not really seeing anything that should cause too much alarm. The stiff neck and swallowing problems could easily be explained by worrying about your health (tense neck and swallowing muscles).

It sounds as if the problems with your muscles stem from the problems you are having with your spine.

Why should I PM you? You attempt to belittle and intimidate all who disagree with you in a public posting does that now make you uncomfortable?
 

wright

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I apologize

I for one think this has gone far enough . . . and I will certainly take a decent chunk of responsibility for it starting to get ugly. This could go back and forth endlesly, which I feel is not productive at all. Jeff, Lorie and anyone else that I have offended, I want to apologize. I truly am here to help and I know everyone else is too. There are many strong personalities on here and most people on here are dealing with a lot in life, including myself (just because I haven't been diagnosed with ALS doesn't make my condition a cup of tea). I think if you combine those two things, these types of outbursts can happen. I have no hard feelings towards anyone and I hope you feel the same way. Take care everyone.
 

olly

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zenarcher/wright

i don't know much about emg's or correctly diagnosing als in the early stages.
i too have done alot of research and there is a hell of a lot of miss-information/outdated stuff out there. i can't honestly agree or disagree with either of you.
what i want to say is....... this forum is for friendship and up building not verbal dog fights,i am sure i am not alone on this but i am deeply upset by the hostility and come on this forum to escape my problems and find some comfort not to read posts like this. it's not what you are saying but the way you are saying it. you can debate nicely.
i hope you are both in a "better place".
take care:
caroline:-D
 

CindyM

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I do not now much about how to read emgs and other tests but I am learning quickly about Internet forums, LOL. :-D

Almost every forum soon discovers that for some reason it is almost impossible not to have controversy arise from time to time. We've said it before but it bears repeating: anything written in print for some reason ALWAYS sounds more strident than intended. It is the reason why corporations advise people to think before pressing the "send" button.

Here, we provide the edit option but you have to exercise it within a few minutes of posting your comments. If anybody looks back on something they've posted and ever decides to re-word it after the edit time has passed, I encourage them to contact one of us and we will help with this request.

Cindy
 
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