Questions for Al and Wright

[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]

Vote: My Vote is on Jeff

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]

Childish

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!

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]

An apology, so be it

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]

Thanks, Wright

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...........which is great, it takes all kinds to make the world go around.......:-D

 

[Jamiet]

My 2 cents

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 (undiagnosed) 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