Questions for Al and Wright

[Karin Joy]

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]

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.

[Lorie]

Please rerad from real people who had clean EMG's before being DX with ALS.



http://www.als.net/forum/topic.asp?TOPIC_ID=2869&whichpage=2


Lorie

[wright]

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]

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]

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]

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]

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

[wright]

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]

Anyone ready to vote?

I'm with Jeff.

Sharonca

[hardy42]

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]

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]

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]

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]

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

[Al]

David's been away on a cruise. I was going to call him today and see how it went and tell him the forum didn't implode while he was gone. Good thing I didn't get him first call. Try to get along boys.
AL.

[wright]

Jeff, I say this with all due respect.

I feel it's important to address two points:

Bulbar symptoms can show-up on EMG's because those are from bulbar neurons . . . that is . . . neurons from the brainstem and those neurons are still considered lower motor neurons. Upper motor neurons are those neurons from the cerebral cortex . . . and again . . . damage to those neurons will not show-up on an EMG. Bulbar symptoms can originate from upper motor neurons as well (just like limb-onset symptoms can), and if they do, will not show-up on an EMG. That is when you are diagnosed with pseudobulbar palsy (upper motor neuron death causing the bulbar symptoms). I assure you that I am correct.

The other point I want to address deals with an early EMG being clean with ALS. In the early stages of ALS, it is very focal (there are many studies that show this and I would be more than happy to share those with anyone who wishes to see them). Therefore, not all limbs may be affected in the very early stages of ALS, when it would not meet the diagnostic criteria of ALS. If an unaffected limb is needled, then the EMG will be clean. This would happen especially if the EMG is not thoroughly done. Eventually that unaffected limb will assuredly be affected and a later EMG would then be dirty. Again, however, if symptoms are due to upper motor neurons, the EMG will be clean . . . and if clinical signs warrant it, the person will be diagnosed with PLS or at the very least, upper motor neuron dominant ALS.

I respect you a great deal, Jeff (along with everyone else on this forum) and certainly hope that we never have another exchange like that again. I really feel bad about it and I hope there are no hard feelings.

Al, Cindy and David: I must apologize to you too.

[Lorie]

I am with you all the way Jeff! And the many, many people I am getting PM's, E-Mails and Phone Calls from. You know who you are!

Lorie-Working to Cure ALS!

Jeff, I will look for you on messenger later. I am helping my brother that has a definite DX of ALS.

I am glad I have been on here for a year now. I would have been long gone.

[hardy42]

Obviously you didn't see how Wright took the high road and apologized. So please tell me why you would want to try to start trouble again. Reading this entire thread, it looks like you were the one who started the whole thing Lorie. You pasted that "clean EMG thread" on here because it looks like you have something against Wright (I saw in your own thread that you feel he needs to write you a check). If it wasn't for Wright, I would have read that thread you posted and would have been scared out of my mind as would so many other people on here I bet. Thank goodness Wright could interpret it for us. Maybe that's why you don't like him: because he actually understands the medical/scientific stuff that most of us don't. I actually called my neuro friend that did my EMG and I made him go on this website and read this thread and he told me that Wright was right in everything that he said. Wright is obviuosly the smartest guy on this site. He has a Master's degree and a Ph.D. and teaches in a medical school. I for one always look forward to what he has to say. He has taught everyone on this forum a lot and it seems he does it because he cares. People actually ask for him specifically in their threads. Where are you guys by the way. Isn't anyone other than me going to stick up for him? Wright, if you read this: if I were you, I would leave and take your knowledge somewhere else where it will be appreciated.
As for you, Jeff: why didn't you apologize for your behavior. You didn't have to attack him like you did. I read another one of your posts from yesterday when you attacked another member on here (talljohn). Wright actually defended you in that thread and this is the thanks that he gets.

[Lorie]

Hardy, You can have Him, I am GONE!!!!!!!!

[happy]

WOW, this is amazing....Wright apologies, very nicely to you both and you still come on and start trouble by teaming sides? What is your purpose? Even, if Wright was wrong, he said he backed up and EVEN said that he was sorry for offending! Reading this kind of stuff makes me sad. Is it really that important to be right? And then to threaten and post your leaving and everyones pm'ing you? PLEASE, get over yourself!

[Al]

Could everyone please take a step back. Take a deep breath. No one has to leave. I'm not siding with anyone here and really can't see why all the fuss about a difference of opinion. Did everyone quit their jobs when they disagreed and had words with a coworker? I think not. The science and mechanics of an EMG and a diagnosis of any MND is very complicated and I don't understand it all that well. I do know I have ALS and know we don't need fighting here. Most of us have enough other stuff to deal with. Let's call it a closed thread.
AL.

[ZenArcher]

I apologize for believing people should get the whole story based on facts not supposition.

I apologize for believing people should trust their healthcare providers or find ones they do trust instead of some enigma across the internet.

I apologize for believing that individuals certified in their field should be the ones diagnosing patients.

I apologize for feeling that slandering another’s healthcare team with no knowledge of them is wrong.

I apologize for being skeptical in a world of frauds. Let’s face it I could be anything from a female prison inmate to the Chief of Neurology at Bethesda.

I apologize for believing that a degree has nothing to do with knowledge.

I apologize for not flaunting my credentials as a means to garner respect.

I apologize for being more concerned that people get properly diagnosed than they get their fears dissuaded.

The thing I can’t apologize enough for is having firsthand knowledge of this disease and its process.

[hardy42]

I understand your intentions, Jeff. You seem to have the best interest for those on here, but so does Wright. And what he was saying was absolutely correct (I confirmed it with my neuro). You both seem like good people and I hope that we can all continue to support each other and get along. You both bring a lot to this forum and it is a better place because of it. I hope you guys PM'd each other and "made-up"

[kilamangiro]

I feel all this has been very unfair on Wright. he backed up everything he has said and it checks out with all the research i have done. And he apologised.

Most importantly i don't think this forum can afford to lose him. His advice tends to be as reassuring and knowledgeable as anyone elses, probably more so, and as somebody who has received some of it, i'd hate to see him driven away from here.

[fmarino]

From what I saw of all of the posts that Wright has had, he didn't tell anyone what he does for a living until he was asked. I'm glad he was asked, because now I feel even better about what he has to say. Please don't go, Wright. The forum needs you.

[tmasters]

It's sad. I hate to see this forum turn ugly, and I'm not sure how it happened. Hopefully we're done with that.

I appreciate Wright for all he has done here and on behalf of the many people he as helped. To me, he seems genuinely interested in helping, and I see no evidence of any false information he's spread. But nobody's perfect, and it could happen.

Thanks, Wright! Please stick around.

-Tom

[Al]

I'd like Zen, Wright and Lorie to all stick around. They all have a niche here. Some like one better than the other for their different reasons. We have the best forum here. Let's keep it that way.
AL.

[kevinw]

Personally I value all their opinions when I'm reading different treads. I know none of us are doctors, so my only hope is that I am reading as detailed and accurate information that I can possibly get from a public forum. But I can sure tell you that there does seem to be a few different personalities on here...........[B]which is great, it takes all kinds to make the world go around[B].......:-D

[Jamiet]

Ok Guys,

My two cents.

I don't take any sides, i don't ask for any favors and ....well.....i get to walk today....and for that will come my next comments......

Wright....thank you for helping, i know where you are coming from...just be careful how much help you offer....we (undx) are the lucky ones for the moment.

Zen....i can understand. Thank you for being who you are...i admire your opinion and courage and have a ton of respect for you, don't quit being whom you are and please don't leave. Ditto for Lorie.

Wright, you have to understand the forum which we are are visitors in, this is one reason, i don't offer too much advise any more. You see, you, like i are almost like the doctors which with we chastize, we merely only study the disease, read upon it and then take what we study and attempt to offer it to others, we do not necessarily live it.

Much regards to all....

Jamie

[CindyM]

My friends...we have had blow-ups before and will have them again. No need for anybody to leave. Myself, I value each of you for your own strengths. There is room fo all here. It is a big forum! :-D

[Jamiet]

And the best....!

[PDaddy]

And active!!

[lhagsjr]

A controversial thread that Im not involved in...

[PDaddy]

A controversial thread that Im not involved in...


Just what do you mean by that??!! You're involved now! hehehe :twisted:

[jimercat]

you still have time my friend..........:mrgreen: (teasing)

[Al]

Lord no. Please let it die.
AL.

[MtPockets]

Mr. Wright,
You may wonder why do some people have a problem with a few of your comments?
Some of the things you say are what I call text book classic signs of ALS. Not all of us present with the classic symptoms.

I know my Doctors were first alerted to begin testing to see what was wrong with me just by a high CK level. Not the textbook way of thinking someone may have ALS. Then again every case is unique and presents itself with its own set of symptoms and rate of progression.

Let me use Lorie as an example. She has been the caregiver of her brother Tim, who has ALS, for years, yes I said years. She has seen all the tests, watched them change over time, seen all the symptoms, seen the wrong diagnosis, reached out for hope only to see it snatched away. She, if anybody, is VERY familiar with symptoms of ALS, tests results, and all that goes with it.

She has to carry her brother around on a mattress in the car because they do not have a handicapped van. Yet, living the nightmare that a caregiver has to face; she has raised money through walks for ALS, car washes for ALS, gone on TV and given interviews, etc. to raise awareness of ALS and the need for research for a cure.

She has years of experience that no one Doctor could possibly know from reading a textbook or research paper. She could probably write one with more accurate information than most medical schools. Why? Because each and every case of ALS is unique. It is not step 1, 2, 3, 4 and wow it must be ALS.

You, however are studying ALS not experiencing it. When you talk down to those of us who have had years of dealing with this horrific disease, it insults us. We are offended. Your comment to Lorie about your money was on a disc problem was like telling her she was a idiot for thinking she might have ALS. That is why she said write the check.

She knows from years of experience what is going on with her body is the same thing that happened to her brother and she just wanted to share her fears with everyone here, to garner their compassion and support. Not seek another diagnosis of a disc problem. So she was insulted.

Lorie, just had her other brother Dale have a heart attack and was clinically dead for over 45 minutes, on the anniversary of the death of their father. Oh, and she is nursing Dale back to health too. In the midst of all this she is having some of the early symptoms of ALS just like her brother did, but yet without a DX.

Can you begin to imagine the stress and worry she must be facing each and every day? Can you understand maybe just a bit better how someone with her experience might react to you saying:
We're all thinking about you, Lorie. My money is still on a disc problem. I'm sure taking care of Tim has had a toll on your lower back and could very well have caused your denervation. Our fingers are crossed.

From your text book comments to her and others, it would help if you considered her experience of living with this disease for years, the stress, fear, anxiety, compared to your studying it for a short time. A little tact and diplomacy in your remarks would go a long way toward resolving the conflicts.

For example read your comments below and see if you could have worded them differently:
Happy's thread has led me to a question: she had a loss of strength and stiffness in her fingers in the middle of the night but then she stated to me that she regained the strength and mobility in her fingers.
If someone did have ALS (and I certainly don't think Happy does), I'm going to assume that the loss of strength and stiffness would not "go away" Is that fair to say? I'm still learning.

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.

That sounds rather harsh, don't you think? I have had Doctors make mistakes before in my own case, but hey they are only human, and can only make those judgments based on their experience. Many may never see a case of ALS, especially a weird one like mine, if they are lucky.

I do want to thank you for apologizing. I think that is a step in the right direction. I only wanted to try to explain to you why your comments may be upsetting to some people. Maybe you can get insight into the thought process we are going through when we read your comments. We are in a living hell on earth, trapped inside a body that is falling apart one piece at a time, while our minds are running full speed ahead.

It is so terribly frustrating, and our nerves are on edge, just waiting for something to come along and push us off the edge. We are like firecrackers with a short fuse sometimes. You just happened to catch us at the wrong time I guess. I'm sorry for that, and I just wish somehow we all could just go back and start afresh having gained knowledge and insight about how each of us understands things.

I know it must be hard for someone with your education to relate to things that are outside the box when it comes to symptoms that are not normal. But, hey some of us are just ab-normal.

Now I will get off my soap box and go back to what I do best, minding my own business and helping those who ask me for help.

You can take care of the rest.

[wright]

Well put Captain Al and so noted. As I said already, I am still learning . . . not only about ALS . . . but also about the people affected by it. As I have also said, I admire you all and am humbled by your courage. I have already put the "ugliness" of that unfortunate exchange behind me and certainly want to start anew. Take care everyone.

[happy]

THAT is grace and humility! Wright, you are a great example.

[Momcat62]

Could everyone please take a step back. Take a deep breath. No one has to leave. I'm not siding with anyone here and really can't see why all the fuss about a difference of opinion. Did everyone quit their jobs when they disagreed and had words with a coworker? I think not. The science and mechanics of an EMG and a diagnosis of any MND is very complicated and I don't understand it all that well. I do know I have ALS and know we don't need fighting here. Most of us have enough other stuff to deal with. Let's call it a closed thread.
AL.

I agree, AL.....I just joined today! My husband is going to see the GP tomorrow because of some issues I posted on the forum..I need EVERYONE'S support, everyone's wisdom...This board has some amazing help and support to offer.

CAT

[Momcat62]

Great post, Cindy! I joined today. ALS can cause some major blow ups! The concern, fear,e ct..I can only imagine . Will keep the forum updated about my hubby who goes to the GP tomorrow...you all are awesome!
CAT