Smoking gun for ALS diagnosis?! - Page 3

CindyM · 10-26-2008, 06:47 PM

Sercher- I think Al said it best. This forum is about support. You have an odd way of seeking or giving support. If you feel unwelcome, so be it.

Cindy

patricia1 · 10-26-2008, 07:48 PM

I DONT KNOW HOW ANYONE ELSE FEEL BUT THESE LONG THREADS ARE SOOOO BORING

PLEASE GET TO THE POINT

MY LIFE IS SHORT ENOUGH

PAT

Al · 10-26-2008, 07:51 PM

And the quotes are not needed either. Scrolling is time consuming and tiring for us with loss of mobility, not just atrophy.

AL.

Searcher · 10-26-2008, 08:28 PM

Rose,

Thanks for your post. Sounds like your doctors really thought that your ALS has an autoimmune cause or aspect. Maybe there will be other approaches that can be tried along those lines. I wonder about the role in Vitamin D in these autoimmune problems (since it is known that low D can cause autoimmune problems) and therefore possibly in the problems they may give rise to, perhaps such as ALS.

Searcher

wright · 10-26-2008, 09:18 PM

There are many theories as to what causes ALS but autoimmunity is not very high on that list as of now. I also don't think Rose's neuro's think autoimmunity had a thing to do with the development of her symptoms. She has certainly had some other health issues that could have been due to an autoimmune etiology but they aren't linking the two.

I'm certainly not going to sit here and say that autoimmunity has nothing to do with the etiology of ALS but as of right now, absolutely no correlation exists.

Searcher · 10-26-2008, 09:31 PM

Cindy,

If you read it, I wrote a post in response to Eddie's long post expressing ALS worry that I thought was pretty supportive. Do you disagree? I guess if you don't like what I post here either you can skip it or I can leave. I thought this forum was for people who wonder and probably worry about having ALS. Is that your situation? It certainly is mine. What do YOU mean by giving or getting support?

Searcher

Searcher · 10-26-2008, 09:35 PM

Patricia,

Are you referring to the several persons who have posted long posts here in the past few days? Guess if they bore you, you could skip over them. If they are boring to you, making them shorter is unlikely to make them more interesting. Sorry.

Searcher

Searcher · 10-26-2008, 09:38 PM

Wright,

From what I've read, it is more likely to be the case that autoimmune disorders mimic or masquerade as ALS. MMN would be an example.

As for Rose, I wonder, then, why they treated her so intensively for a putative autoimmune problem. I thought from her post that it was to try to help with the ALS.

Searcher

patricia1 · 10-26-2008, 09:52 PM

Making Them Shorter Would Make More People Read Them

I Do Skip Over Them

Pat

wright · 10-26-2008, 09:55 PM

Searcher

Yes, autoimmune disorders such as MMN and CIDP can mimic ALS and they are treatable, but they are certainly not motor neuron diseases.

With Rose: she was not getting the aggressive treatments to treat ALS (she actually does not have an ALS diagnsosis) . . . but rather . . . to see if she would respond to that treatment . . . and if she did . . . she did not have motor neuron disease. Her current diagnosis is actually pseudo-bulbar palsy with possible motor neuron disease. She is still being evaluated.

There is no treatment for ALS because as of right now, they have no idea what causes it. As soon as that is found out, then treatments and cures will be forthcoming.

CindyM · 10-26-2008, 10:28 PM

Quote:

I guess if you don't like what I post here either you can skip it or I can leave.

That is the second time you raised that possibility. If you really want to leave this forum, then do so.

I am tired of people coming on here, annoying our members, and then claiming they feel our community of caring and wonderful folks do not meet their needs.

You are not the first person to threaten to leave the forum because you do not like how members interpret your posts. You are, however, the first person I have said, "so leave, then," but you probably will not be the last one I say this to.

NOTE to everybody: I have just discovered one of my breaking points. I am definitely NOT impressed whenever somebody says our members do not do a good enough job listening to them. From now on, whenever anybody proposes to leave this forum, they will get my blessing to do so.

Be forewarned: Cindy

awieleba · 10-26-2008, 10:31 PM

ROSE~
You are such a supportive and wonderful lady! I really admire the way you respond to people.

SEARCHER~
I understand your concerns. It sounds like you have been dealing with issues for awhile and have alot of information that can be of use to some folks here. Not every case of anything is typical. There are always those fluke cases and that is what scares some of us that have had clean emgs but progessing symptoms.
I have no dx and ALOT of mirroring symptoms, and a clean emg 6 months ago. Yet the atrophy (or thinning of muscles if you will) continue. My ankles and feet get worse, it has been worse just the last 2 weeks, my feet hurt every day becuase they have lost so much padding. I HOPE that I get anther 20 years like you. I really do, I would give anything to have this plethra of symptoms and still be able to move about for the next 20, I just want to take care of my 3 babies!

I think that it is wonderful that you had this unset of symptoms and a bad emg to boot, and you are still about 20 yrs later!!!! It is great, you should be so thankful for that compared to the people who where in there 20s with kids and passed from this. You have been blessed, I know it does not feel like it, but IF if get anther 20 yrs with these problems but not worse........praise be to God!

I think you have alot to share, as you have been looking into this for so long. I am not sure as to why people are being so cold to you. There is just alot of anxitey prone folks on here, but for the most part who could blame them. I was so physically acitive before this, I miss it every day.

Take care.

april

Searcher · 10-26-2008, 10:51 PM

Quote:

Originally Posted by CindyM

That is the second time you raised that possibility. If you really want to leave this forum, then do so.

I am tired of people coming on here, annoying our members, and then claiming they feel our community of caring and wonderful folks do not meet their needs.

You are not the first person to threaten to leave the forum because you do not like how members interpret your posts. You are, however, the first person I have said, "so leave, then," but you probably will not be the last one I say this to.

NOTE to everybody: I have just discovered one of my breaking points. I am definitely NOT impressed whenever somebody says our members do not do a good enough job listening to them. From now on, whenever anybody proposes to leave this forum, they will get my blessing to do so.

Be forewarned: Cindy

Cindy,

I never said that "your" community (implicitly excluding "me" from that community) did not meet my needs or that I didn't like how members (I guess I'm not a member, just an intruder) interpret my posts or do not do a good enough job listening to me. You are putting words in my mouth and mischaracterizing what I said. I was merely responding to critical responses by you and a few others about the content of my posts, the length of my posts, questioning why I was posting, etc. Naturally, I have to consider leaving this forum if this is the sort of reaction I'm getting - that my posts are inappropriate, for one reason or the other; that there are certain things to be discussed here and not others. I'm sorry that I am an outsider who came to this forum looking for help, but you feel is merely annoying you and the others I gather you feel are the members, who this forum is for. You have the right to be annoyed and feel a need to control what and how how people express themselves, but please don't twist things around to say that I was objecting to the quality of the responses or help I got. I'm just responding to criticism; including criticism from at least one person for being worried about ALS, which, I thought, was the sort of person this group was for. Or is this not correct?

I sure didn't come here to get in arguments with people like you about whether posts are too long, too boring, expressing too much anxiety, whether beta-blockers are used for anxiety, what sort of questions are appropriate to raise here, etc. Despite my need for such a forum, if there is this level of need for control of free expression (as, by the way, is often the case on any internet forum; there's always one or a few who feel some need to control what is said and how to a great extent, instead of just ignoring what they are uninterested in and letting others decide for themselves if they are interested and want to respond) than this probably wouldn't be a club I'd want to be a member of, to paraphrase Groucho Marx.

Sorry to annoy and disturb you with my concerns and questions about ALS.

Searcher

Searcher · 10-26-2008, 11:00 PM

Wright,

See my other post in response to this one. This seems in part a semantic argument. If ALS is really more a syndrome than a disease, as Patten suggests, than there are known causes of this clinical picture of ALS; at least some of the time. Patten's point was that neurologists should spend less time describing the clinical picture and more time searching for possible causes of that clinical picture; be they autoimmune or other known causes. This approach makes sense to me. Maybe in the end, ALS will turn out to be 500 different, specific causes of motor neuron dysfunction; many treatable. I pick the number 500 out of the air. We do know the number of known causes has grown. For example, 20 years ago, of course, no one knew that Lyme might cause or mimic ALS (not sure how meaningful the distinction is in this case).

Searcher

Searcher · 10-26-2008, 11:13 PM

April,

Thanks for your post. And I join you in feeling that if I could go the next 20 years with only mild symptoms and minimal disability, I would be so VERY happy!

I had the strange experience of being told I was okay because of clean EMGS (along with basically normal exams) and then, when I had a clearly abnormal EMG, still being told that it was probably a benign condition! That's because my clinical exams were still normal, and had been for about 4 years to that point.

Yes, I suppose I should have been more grateful all these years that I hadn't gotten much worse and was still around, rather than fearing what seemed to be happening at the time or fearing what would happen in the future, based on this.

I hope you find answers, and they are benign ones.

Searcher