Remember We are people facing ALS

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hopingforcure

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I feel like this post had to be written. For those who come to this board petrified of having ALS, while this is a valid and understandable fear, so many who have come to this site lately have been showing signs of nothing like ALS.. While we are surely here for support and guidance, we cannot be expected to have a onslaught of constant fear of a non legitimate nature, you must remember that the disease you come on hear fearing, we are actually dealing with, either as pals, cals, or undiagnosed. progressing and debilitating issues.
I am not being mean or hurtful it is just something that those who come here with irrational fears need to hear. We are all friends to others facing this disease, but please think before you PANIC....
 
Well said Hoping!
You are right on! That is why we are all so glad you are a moderator here!
Rick&Joan
 
Amen!

Dear Hoping

You are so right! Sometimes I think I am losing all my patience dealing with some of the posts that are on this valuable sight!
 
Hoping,
Glad you said it! It did need to be said! This needs to be a haven for those who share this horrible thing in common and on the flip side a place of hope and advice for those with legitimate concerns...not a place to feed into neurosis when many haven't even seen doctors before they come in here seeking attention or those who have been told they don't have a MND by a neuro but claim that this makes the doctor lose credibility in their eyes...WTH?!?!. I understand that neurological symptoms are scary..but get a grip and try to think logically..and hopefully you'll find an answer OTHER THAN MND..instead of panicking and wasting another precious day of life!
Thank you!
Tracy
 
Thanks Hoping! I am glad you have said this. I have no patience these days for those long posts by people who suspect they have ALS even though most of their symptoms point away from it. I have had a very hard time these days making it through a day without crying privately at least once and my patience is not what it used to be. I broke down today when my sister realized that we will never hear my Dad whistle ever again. He loved to whistle while he worked :(
 
Hoping, well said and it needed to be said. I try to stay out of these, but get sucked in time after time by the illogic and cluelessness.
 
Thanks for this thread, I too have real problems with all of the hypochondriac threads that are coming on recently. I mean if you KNOW that you are a hypochondriac and actually admit it to the world why do you argue with your doctor (and us for that matter) when they tell you that there is nothing wrong with you? I really believe that too many people are too connected to the virtual world and don't have a real life. When I was in my early twenties there was no internet and there was no way to get medical information except for going to the doctor or the library. And excuse me if this is crude but at that age I was more interested in getting laid and/or drunk than in twitches.

Being able to correspond with others who have valid concerns and advice is very important to me. I have a good relationship with the ALS association and clinic but they are all professionals who know PALS but don't actually have the disease and are not family members of PALS. This is a SUPPORT forum not a DIAGNOSIS forum. While I wouldn't want to discourage people from trying to gain knowledge about real medical problems that they might have I have no patience with people who don't know what it is like to have this disease and probably never will. Sorry, but my eyes glaze over when I read most of these threads.

Thelma, it is so saddening to realize that we are losing the ability to do the ordinary things that we used to take for granted. It's like PDaddy's thread a while back about the things we miss, you don't know what you have until it's gone. I know it's not the same but I hope that your dad is still able to whistle inside (as I try to do). Nobody but me can hear it but me but it's there anyway.
 
Thank you for that posting.

I was beginning to become sick
from worry of becoming sick
about reading of becoming sick
of worrying someone
might be sick with something.

OK ... that was a bit much , but so were some of those threads. It like you need a rubber stamp that says "Get a Life , See a Doctor"

Is that cruel ? Maybe , but what I "really have" is cruel.

{{steps down from the smart-ass podium}}
 
Ditto, Ditto, Ditto.....how many times I have gone to post replies to these people only to think I might blow a gasket and get rude. (though I know many of them have serious fears) They should try ...walking...in our shoes for a while to see what als is really like, then appreciate the life they have I for one would dearly love to swap. Why do they try hard to persuade themselves they have this awfull disease. I put all my effort in trying to tell my body I DONT.
 
I totally understand this. As a person who posts occasionally on this thread, I do wish to explain.

I have been told I don't have ALS by an ALS doctor, I have had a clean EMG, I started showing symptoms (only twitching at the time) when I was 25 and I am only 27. For these reasons, part of me feels I should not be on here. On the other hand, I have what has been described by doctors as "muscle wasting" in my thenar muscle and I get profound weakness after exertion. The other day (after no exertion) my pinkie finger was practically dead and I have had non stop fasciculations in both my thenar and hypothenar area. My left foot also has less muscle mass and that twitches constantly. It scrapes often when I walk, but doesn't "drop" and I haven't fallen down because of it. My muscles fatigue very easily and shake violently after moderate periods of exertion. I had radiation to the spine as a child cancer patient, and that raises my risk of developing ALS.

I am a person in limbo; I have many things that point away from ALS, but a lot of things that are suspicious and indicative of something going on. I've been twitching for 2.5 years, and the conventional wisdom behind bfs is twitching - weakness - atrophy = BFS. I have twitching + weakness + "muscle wasting" (they haven't called it atrophy yet) so I'm trying to figure out what my "=" is. My symptoms are not wholly consistent with anything I can find; myasthenia gravis, multiple sclerosis, ALS, etc.

I come to this site to humbly ask those who are close to this terrible disease: "does this sound familiar?" For example, my pinkie that went really weak the other day, the next day the strength had returned. I asked if this was consistent with ALS, and Al told me it usually doesn't work like that and it doesn't sound like ALS.

Sometimes coming to this site I feel better, like in the occasion I just cited, other times I feel worse (reading about people whose doctor also gave them a clear, the "too soon" EMGs or the super slow progressions)

I feel okay posting because there is a section entitled "Do I have ALS? Is this ALS?" I would NEVER intrude on the other threads, specifically for PALS and their family members/care takers. Honestly, I don't know who to talk to. I don't fit in on the BFS boards all the time because this seems to be more than BFS, and I worry that my posting scares the other folks there who just started twitching. I don't fit in here because I do not have an ALS diagnosis or super obvious presentation. And I don't know where else to look; auto immune boards and cancer survivor boards don't turn up much.

I truly understand your frustration regarding those who twitch and flip out they have ALS, and it must be ridiculous to see people who are generally healthy wasting their lives with empty and pointless anxiety. I never try to complain on these boards; in fact, reading some of your stories makes me complain less in general (puts economic problems and the like into perspective.)

I want to thank all of you for your patience, your kindness and your wisdom when helping those of us who just don't know. But if someone posts repeatedly about just twitching or something of that nature, I also understand your frustration. You live with ALS as part of your reality, you shouldn't have to deal with someone who is healthy but can't accept that as reality.
 
I do agree that some people are looking for a diagnosis here and some people are stressing out over very simple things. I am now feeling a little guilty for being here as my mom was diagnosed with MND 3/31/09, and now her 2nd neuro says her can't make a diagnosis after all of the test results he has looked at. She obviously has something going on, foot drop, leg weakness, slurred speech, we just can't seem to find out what it is. There are so many things that point to a MND but she has not changed any in about a year . It has helped us so much to get peoples thoughts about this here on the message boards. I know some people can be annoying when posting about their symptoms, and if I have been one of those people I apologize. I have gained so much wisdom about MNDs from all of you, and for that I thank you from the bottom of my heart. As for those people who think they have MND but have not gone to the doctors, please don't waste the time of the people on here. If you find out it is MND (or possible) then come back and ask for help, don't dream up something that isn't there. You have no idea what a slap in the face that is to the people who are suffering from this disease.

Once again, that is just my opinion.

Dana
 
Very good post AndyDJX, as with all conversations/debates both sides need to have a say. Based on your post (sorry I have not read any others from you) you are one of the people that are seeking advice rather than a diagnoses. I concur with the rest of the posters in this thread. I use to read some of the other posts but now don't even bother especially the ones that come here and expect others to diagnose them when they haven't even seen a qualified doctor yet. They continue to post symptoms that are not ALS related but don't listen to what the doctors are telling them and others on this board either. I did a ton of research on the wifes symptoms prior to her diagnoses, even signed up to this board prior but did not post until we had a confirmed diagnoses. I know it is hard being "undiagnosed" especially over a long period of time, but I would put more faith into the people you are seeing for your condition/symptoms. We pushed really hard after seeing the first neuro for referrals etc since he didn't know what was going on and wanted to see anyone that would. No offense to him as he was only doing his job but the wife was only one of tons of patients and we didn't want to waste time doing the old TV repairman hit and miss type of diagnostics. Maybe we got lucky with being able to see the right doctors. We went from the general neuro to one that specializes in CIDP/GBS to the ALS specialist within 6 months, but it took a lot of persistence on our part. I even have my own health issues that if I took everything I read on the internet at face value I would probably be convinced that I too have ALS. ( I know I don't, I am just getting older and been having issues with denial that I am not the once vibrant 20yr old I once was...) I guess I am starting to ramble as I have a tendency to do but the whole point is this... this is not a place to seek a diagnosis, it is a place to come and look for support and seek advice after you have received a diagnosis from others that share the same set of circumstances as yourself. You want medical advice/diagnosis, see a doctor, and keep pushing until you are seeing people that are truly qualified to confirm or set your mind at ease. I read this site at least 2 times a day. First thing in the morning over coffee and when I get home from work. Although I don't post much, it has been a source of education and humor and most of all inspiration.
 
AndyDJX -

If you've "been told I don't have ALS by an ALS doctor" and you "have had a clean EMG" then for you the answer to the question "Do I have ALS? Is this ALS?" is no, you don't have ALS, it isn't ALS.

Sorry but you are a perfect example of what the PALS and CALS above are talking about. Why do you think people who have ALS should spend time comparing symptoms with someone who does not?
 
Liz-- I hope you're right. And I think you are; I don't believe that I have ALS, but with the types of symptoms I have been having, I can't rule it out either. There are many on this board who were told by doctors that it wasn't ALS and initially had clean EMGs. There's a recent post by someone who had a clean EMG then 7 weeks later they had a dirty one suggestive of MND. I'm not a negative person or a pessimist and I don't look at the exceptions as likely scenarios, but I am aware that they exist.

Your second point "why should people who have ALS spend time comparing symptoms with someone who does not?" The answer to that question is up to the PALS who choose to come on this section of the ALS boards. If this was just a board solely for discussion about ALS, I would have never posted. But since it has a section dedicated to "Do I have ALS? Is this ALS?" I felt comfortable enough asking those very questions. And those who answer them choose to do so. That being said, I totally understand why this thread exists with complaints about hypochondriacs and those who have fears that, as hopingforcure put it, are not legitimate.

I don't think this is a question of whether or not the "Do I have ALS? Is this ALS" section should exist, it's a complaint of those who are irrational hypochondriacs. If you just twitch, this is not the board for you. And if someone posts once about it, they should politely be told it's not ALS and move on. If someone who just twitches refuses to believe that and feeds their fears on this board, constantly seeking reassurance; that's a problem.
 
I still have one doctor telling me I have PLS. Can I stick around until he gives me the all_clear?

I love you guys!

Zaphoon
 
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