What do you think?

[bluedog]

Nikki, in your original post you did not say that PALS don't present with itching. You said:

"What is left? Itching? Another sensory symptom."

That implied that itching isn't an ALS symptom because it is sensory because that sentence followed your other sentence of:

"They clearly state ALS is not sensory- so your burning and tingling and pain are not signs of ALS. All those are mentioned in the stickies"

So I said to do a search to refute that ALS doesn't have itching to stop the misinformation that you posted. That's all.

I then used the word presented because you used it, and I just figured you used it incorrectly. Though you will find at least one post of someone who presented with itching, although that person had PLS. Others posters said that they had itching early on, even before diagnosis or significant other symptoms, so you are incorrect again. You do the search if you want. I'm not going to do all the work for you.

I have every right to be on this forum, so please stop harassing me.

If you want to have a rational discussion about ALS symptoms or anything else ALS related I respect your opinions and am glad to do so. These attacks do nothing to forward any newbies understanding about ALS and only serve to embolden other members of the forum to spread misinformation.

 

[MaxEidswick]

> These attacks do nothing to forward any newbies understanding about ALS

nor does feeding them non-definitive stats. they need to go to qualified neuros for guidance

 

[Nikki J]

I did indeed do a search and the one person who presented with itching that had MND was PLS not ALS as you correctly state. The other people in that thread had sensory things that were not exactly itch except for one person who does not have an MND but another neurological illness altogether. This poster is not diagnosed and is enquiring about his current symptoms which by definition are presenting symptoms. And you said itching is a common presenting symptom in ALS in your second post.
It is my personal opinion you are wrong in many of the things you post. When I think you are wrong I am going to say so. You have no problem speaking up when your opinion is different from another member. I do not understand why you choose to be here. I would not be here myself if my sister and I did not have ALS. I will retract apologize for and delete my private opinion on your motives as it was unsolicited but I do not think asking why a person who is neither a PALS nor a CALS remains here after what you have reported are numerous opinions from different neurologists over a considerable period of time is unreasonable

 

[Atsugi]

Bluedog, I'm not familiar with this "attack Bluedog" argument. I come into this argument totally unaware of any past conflicts. So please enlighten me.

If you're not a doctor, a PALS or a CALS, why are you here? It seems to me that you have neither a need to be here, nor any experience with the disease. So again, why are you here?

 

[AfraidButNotAlone]

Nefarious I tell you!

 

[AfraidButNotAlone]

I think you should stop arguing with the ignorant....

 

[dparker]

Sooo, I should not be worried? Or should I?

 

[Nikki J]

If you go to member's profiles by clicking on their name you can then go to statistics and review posts and threads started. You can decide for yourself whose opinion you think is more valid. I am sorry this thread took such an acrimonious turn when you posted in a very civil manner. Forgive me my part in it

 

[AfraidButNotAlone]

I think certain folks see ALS in nearly every aspect of nearly everything. That, to me, undicates a psychological issue and not neurological.

 

[Dusty7]

dparker (the OP) asked "Sooo, I should not be worried? Or should I?"

Sorry your thread got hijacked, but really Nikki's first post answered your concerns. Your symptoms are sensory and ALS is about motor nerves, not sensory nerves. Go ahead and keep your neuro appt. There may be something wrong, but it sure doesn't sound like ALS.

To Rob--Yes, as I've said before, the desire to have ALS is a sign of a medical condition... but it's not neurological
And I guess people without ALS hanging around ALS forums may also be a sign of a medical condition.

 

[dparker]

Thank you, sorry I started this problem. I was just scared and need some answers. Have a good day.

 

[Nikki J]

Completely NOT your fault. Again I apologize.

 

[bluedog]

I continue to post here because I have progressing symptoms and EMGs that continue to get worse. I know of at least one person with my EMG results and no clinical weakness that was given a diagnosis of possible ALS at Mayo. So I mostly read to see if others are in my position and to see if they end up with a diagnosis of some kind. I also reply to posts where I think my input is valuable. And of course we all know that a neurologist saying that you don't have ALS means very little, especially when you have abnormal EMGs and progression.

Nikki there are other threads/posts where PALS talk about itching. And you can search the Internet too to find more.

And again Nikki, this is what happened:
1. Your first post basically said that itching isn't an ALS symptom because it is sensory. (Forget the fact that that in itself is incorrect, and we cleared that up last week with studies to back it up.)
2. I said itching is an ALS symptom. I didn't say that the poster sounded like he has ALS because his story doesn't. I just said that you were wrong.
3. Having been called on your error, you switched to itching not being a "presenting" symptom, which you didn't mention in your first post.
4. I then used the word presenting because you did, thinking that maybe you meant presented to the dr. and not "initial symptom.

Nikki, I am not against people disagreeing with me at all, and I have nothing but the highest respect for you. I just think that it can be confusing when people speak in absolutes such as ALS isn't sensory and has no itching. Asking people to read between the lines to ferret what you really meant to say is asking too much.

Instead of speaking in incorrect absolutes, I think that it is might be more helpful to say, "You have some symptoms that some people with ALS have, but your story does not sound like ALS, but keep your upcoming appointment and see what the dr says."

 

[bluedog]

Dparker, I don't think that anyone reading your story would think that it sounds like ALS. Just keep your appointment with your dr and see what he thinks may be going on.

 

[AfraidButNotAlone]

If it doesn't wth is up with the "not normal" and all the other blistering garbage?