Concerns about DIHALS subforum

[Teppo]

I am fairly new on this board, but am already fascinated that some pretty strong pronouncements are made here in a sphere (brain and neuromuscular disorders) loaded with ambiguity and uncertainty. It is so common on these pages for someone to post the disclaimer that "I am not a doctor and I don't make diagnoses", only to hurl the "ANXIETY" thunderbolt at the OP. Anxiety is a diagnosis, also, and actually requires insight and skill and personal assessment to correctly arrive at a conclusion.

Good to remember that anxiety about a problem does not reasonably mean that anxiety is the problem. Most of us with fatal or otherwise life-altering illnesses have had some richly justifiable anxiety at points along the way. Yes, that can cloud the situation, but it does not mean the anxious person is less deserving of respect than we are.

I know very well that all posters have tough challenges, but that does not mean that someone we believe does not have ALS is in fact living a better life than ours. If we think back to our pre-diagnosis days, we can all remember that all was not peachy all the time. Life is tough for most of us (with or without ALS) much of the time.

Also good to remember our own saga of symptoms and (often delayed) diagnosis. One does not have to look far (or attend an ALS support group breakfast) for people whose story begins with a year or two of fairly vague little things that eventually blossomed into a diagnosis of ALS. The dismissive "you do not belong here---we have real problems" is a shocking statement to me. Some of the inquiring DIHALS folks will eventually be found, despite our reassurances to the contrary, to have ALS. Some will have serious, even fatal, non-ALS processes. Some, to be sure, have "only" anxiety disorder.

I don't think we want to join in the "my fatal disease is worse than your fatal disease" competition that sometimes appears to be waged here. It is unseemly. Human existence seems to have plenty of stress and pain to go around for all of us.

Aspiration does not necessarily lead to pneumonias. Minor or moderate aspiration can lead to coughing. As long as our cough is strong enough, we will clear enough of what was aspirated to avoid lung infections. Every person (and dog and cat---every mammal) aspirates without known adverse impact during sleep. Mild cranial nerve or oropharyngeal muscle dysfunction from any of myriad causes can cause minor aspiration that the person is quite aware of. A chest xray or other conclusive proof of aspiration doesn't make the fact any more real to the person aspirating.

Again, in this thread, we have persons posting that ALS isn't about impairment---it's about unambiguous inability to do things. That is ultimately undeniable, but it is equally clear that even those posting such definitive pronouncements all experienced something less than full paralysis earlier in their course.

Whatever diagnoses each of us has today, or will have tomorrow, we have much more in common than the differences that separate us.

Have the moderators thought about doing away with the DIHALS category? if we aren't doctors and we don't really make diagnoses and if we are chronically irritated by those who bring questions (and fears and anxiety), maybe matters would be better without these threads?

Everyone's entitled to my own opinion.

T

 

[Nikki J]

This was moved from a dihals thread because the discussion is not specific to that thread.

The DIHALS section is very very difficult. It came about before any of the current moderators were even members. It was added at the request of members who were unhappy with the anxious worriers who were posting. The subforum allows PALS and CAlS who wish to ignore these posts more easily. Is it a perfect solution? Definitely not.

Would we be better without these threads? Yes I think so but they are not going away with or without the subforum. It would be better if the subject could remain helping people with practicalities as they go through the diagnostic process.

Do some who come to the section get diagnosed? Yes. Are those people usually told unanimously that they are ok, should go away etc? No. Has it happened? Maybe. Is anxiety a diagnosis? Yes. Often though if you read carefully the original poster says up front they have a diagnosis of anxiety.

You will see if you continue to read that there are people who return multiple times after being told by multiple neuros that their exams and emgs are fine that they do not have neurological disease. This is inherently different than those who went through a period of something is wrong, we need to follow you, do more tests. That is limbo and very nasty

 

[Teppo]

Thanks, Nikki

Understood.

T

 

[GregK]

Suggestion that someone has anxiety and that they should see a doctor when they've come back for the third time saying their little toe twitches or that they've a wee divot in their thigh, seems much more supporting than the actual truth.

 

[Mocha1]

I have to agree with the statements Teppo made. This post may get me banned but that's ok at this point. I say the following with the utmost of respect.

As a long time lurker, I will not post my particulars BECAUSE of the tone of the DIHALS section. I don't understand some of your responses to be honest. More than once, people have come here with far more specific complaints and concerns than I have, and I've been shocked by the dismissal these poor souls have received. In every case that I've seen when someone brings their initial concerns forward, and ultimately is given the diagnosis that no one wants to hear, you folks typically say: "Nope, not ALS, move on". Where is this coming from?

Just Thursday I saw a poor soul post about dropping things, falling, twitching. Mike then went on to shut him down saying 'Nope, not ALS, move on'. I was so mad. How many people here had to see multiple dr's before being taken seriously? Where is the compassion there? Where's the helpful stuff... like how about: "you may need some additional testing"... etc. People that experiencing these symptoms are really really scared.

Finally my point: Get rid of the DIHALS forum. I like reading it and it provides me with the information I need, but it lately has become a tool of shaming scared people because they aren't dying. It doesn't seem to me like it's providing a service to those that are in need of advice. Perhaps just expand the stickies as a FAQ and close it down. If what you consistently say, that you are either dying or caring for someone who is dying, then you won't have this additional burden. It's clear this is a forum for PALS and CALS. Let the rest of us nutters watch from the outside.

 

[lgelb]

Hi, Mocha,
You have not read very far if you think we never recommend additional testing, dx for consideration or other modalities to alleviate symptoms. So you'll forgive me if I take your conclusion with a grain of salt.

As I have said before, it's not a perfect mechanism for separating wheat from chaff, but better to be chagrined here in the sandbox than to fall into the many scams relative to common symptoms that waste time/money/emotional investment and can even present health risks. If even one person has been spared those consequences, which I know for a fact to be the case, it's worth continuing from my point of view.

Best,
Laurie

 

[swalker]

I don't participate in the DIHALS sub forum, but occasionally read it. I find the tone of the responders in that sub forum to be amazingly restrained and respectful. I have great respect for the members who can post there and think we all owe them a great big THANK YOU.

I think the DIHALS sub forum serves two very important purposes.

1. It provides a place to catch the chatter from folks that appear to have some kind of mental problem. I don't profess to be a medical person and I am not capable of diagnosing someone's mental illness. These people will seek out the ALS forums and will post here. Having the DIHALS subform available for them prevents them from cluttering up the other sub forms.

2. It provides a place for those who legitimately have symptoms that could be associated with an MND to post questions and receive responses from those that have first hand experience with the disease. The vast majority of the people who post for this reason will eventually NOT be diagnosed with an MND, but unfortunately a few will. I have watched some over the years and recognize the DIHALS subform provides them a great deal of information and support.

Of course we can't diagnose anyone on the DIHALS sub forum with anything. We are not doctors and a web forum would be an inappropriate method of diagnosing anyone with anything even if we were qualified medical professionals.

Writing that someone shows signs of anxiety and should seek medical help is not a diagnosis. Likewise, telling them that they don't show symptoms consistent with an MND is also not a diagnosis.

I am a strong proponent of the DIHALS sub forum and and incredibly grateful to those that have the ability and willingness to provide answers to the visitors there.

Steve

 

[scaredwifetx]

This forum's main goal should be to aide and support those that have been diagnosed. There are so many DIHALS that come in after being told several times by their doctors that they do not have ALS. A good percentage of the DIHALS admit to having anxiety. Other's that don't admit they have anxiety have been told they do.

We are not Doctors. The first step anyone should take is going through the medical steps. I have been a member of this forum for over a year and have not seen one case where anyone... told a DIHALS that they don't have ALS... to find out later that they did. I also know that everyone is treated with respect unless they continue to post with ANXIETY issues.

DIHALS get answers to the questions they ask here, they get respect and they get our time. There are times when a DIHALS needs to leave and they SHOULD be told to do so. We can't diagnose... so when we say they do not show to have signs of ALS...we are doing it... because we live it each day.

At no time, should this forum be a medical forum. We should not repeatedly be asked to agree and say yes to a DIHALS... when they clearly haven't received a medical diagnosis.

I often wonder what effect the DIHALS, who clearly have anxiety... have on our forum members. I can honestly say that Mike has always been very respectful on this forum until enough is enough. I know I certainly hope that we all don't have to start tiptoeing and monitoring every word we say...in fear of hurting someone's feelings.

 

[WendyWooG]

It's difficult to deal with posts on this section. No one wants to be dismissive or abrupt with people who are worried, but sometimes it can be quite difficult when a question has been answered several times and re presented in different wording again and again. It's hard because if you are not careful you can increase the anxiety.

I try very hard to only answer if I feel I can be constructive and helpful. However we do sometimes have people who are deliberately lying and pushing and demanding attention and do this under several user names which is a horrible thing to do. The moderators do a wonderful job in spotting these it is such a shame that things like this can happen on a forum that is here for help and support.

Everyone who answers on the dihals is trying to help no one is trying to be nasty.

Wendy x

 

[Lkaibel]

The DIHALS section here is a complicated issue. I cannot agree that we should get rid of it, because I came here through that section.

I came here with a clear issue in a thread titled "My Husband". He had a suspect EMG when the original plan had been to confirm an injured nerve. I found people to be rather blunt and direct, but in no way dismissive or unhelpful. In a way, I felt like they kept vigil with me while we went through the process to diagnosis. If the Forum were closed to only those who were diagnosed or were CALS, I would not have had that support. That matters because this is a rare disease and the support can be hard to come by indeed.

I agree that in a couple of instances, I thought the replies were dismissive. However, nearly every other day, at minimum I see posts from people that in no universe are showing ALS symptoms, or have been told by multiple Doctors that they are fine or on occasion even people who I feel are just plain trolling. Its frustrating for CALS and PALS and we are doing these posters no favors by letting them go on and on here.

I don't feel that people here are trying to say only complete disability equals ALS when we say it is "failing not feeling". Nearly every first symptom I have ever heard of is indeed "failing" - to raise a foot, button a shirt, raise an arm above the waist "he would look at his hands and they just did not work"... So, when you come and say you "feel" weak and your hands and feet are buzzing, yup you get told to read the stickies.

I think sometimes we could use a little more tact. I have made some replies to DIHALS that sounds a little too crabby. However, I think that these frightened folks who fear ALS in themselves or a loved one as I did need to also remember that everyone here is to some extent struggling themselves.

As I said, its a complicated issue.

 

[WendyWooG]

I think you make a very strong point Lenore, in that the people trying to support and reply are struggling themselves. I too have been a little short with a reply when having a bad day and my patience was tested.

Personality plays a big part in this some people are forthright and direct, some people have a way with words everyone is just doing their best to provide insight from personal experience. At the end of the day you are asking for a personal opinion from a complete stranger on the internet so you will get an open honest answer from a human being who is not a trained counsellor and is in no way pretending to be one.

I will continue to post on that forum and continue to hope that to the best of my ability I can help people. That includes telling them that in my un medical personal opinion that it seems to be unhealthy for them to be here because it seems to be increasing the worry and fear displayed in their questions rather than reducing it.

Wendy x

 

[Atsugi]

Thanks to everyone above for all the comments, both critical and supportive.

A lot goes on behind the scenes to keep our PALS and CALS from having to put up with trolls and pretenders. I won't be specific about our security procedures, but most of it happens out of sight. There are DIHALS who have used a dozen usernames to con their way in. There are real trolls who are just playing with the forum members to see how riled up they can get us. Sometimes the mods and a couple other dedicated non-mods work long hours just trying to defend the forum from spam attacks from foreign countries. Sometimes they come fast and furious and last for days.

Then there are DIHALS who are honest and scared, but have not described ALS. I hope in every case I/we have included "see your doctor" in our advice. Sometimes--every day--a DIHALS will lose all ability to reason. Some will waste their time, focusing on ALS when they really need to focus on something else. I try to understand them--sometimes I conclude that they need negative reinforcement. We need to make sure that they and others don't quickly flood our site; so we keep our finger in that hole in the dike all the time.

I've heard that there is a person who was rejected but later diagnosed. There is right now an individual who feels rejected and claims to be diagnosed. In both cases, I'm skeptical. Whenever I hear that we--any of us on the forum--have mistakenly turned away a person who was later diagnosed, I research it, going back years, trying to see if we made a mistake. I don't think I've ever found a single case. Please correct me.

I appreciate the criticism and the support. If/when my reply to a DIHALS is flippant or mean, that's because I've given it thought and decided that approach is needed. I could be wrong, of course. Please be direct and concrete with me, cuz I'm not that bright and I'm sure you'll agree I'm not sensitive--my ex-wife would agree! I promise to take your inputs seriously and I'll try to do better. But I hope I/we will never lose sight of the priority: helping PALS. PALS are first, second and third in my mind, all the time, everywhere and without exception.

Thank you to all who posted here. Thank you to David, who spends time and money to keep the board open. And to Al, who inspired a lot of us. Thank you to Nikki, who guides us all. And thank you to mods Laurie, Greg, and Fiona. I thank also Tillie, who stays on watch like a guard dog. Recently, some PALS and CALS have stepped up to the line in the DIHALS section: Thanks, I appreciate that. There are others I've forgotten, I'm sure, because it takes a REAL community spirit to make sure our community is safe and productive.

Finally, a special thank you to Krissy, who gave me two wonderful children and ensured they were raised right before she passed the full responsibility of parenting to me.

 

[Teppo]

Thanks to all who replied. I assure all I am neither a troll nor a pretender, whether domestic or foreign. I am exactly who my profile says I am. Although I am new to the forum, I spent many hours over a few days going through many, many months of questions and answers. If this site logs what members read, the Moderators will be able to confirm this.

I remain somewhat taken aback that responders in a few cases said that they gave inquirers what they felt they needed, including what might charitably be called "tough love" but which would pass many places for ruse and dismissive and conclusory statements when it appears to me none of the above are appropriate.

Atsugi, you go so far as to say that when you are flippant or mean to a poster it's because you have thought it over and decided that flippancy and meanness are "needed". My.

I just finished (retired because medically had to) a many-decades long medical career, and I just never thought anything over and decided that rudeness was not only appropriate, but "needed" to fit the bill. I am almost speechless---but not quite.

Lkaibel, I agree fully that allowing anxious people, whether or not they have ALS or something else serious or nothing else at all to perseverate and burn space in this forum does not add value to their lives or to their medical quest. That does not, in my opinion, give any of us license to be disrespectful or rude, though.

We are, after all, discussing a subforum called "DIHALS" to which the public can post. That would sound like an invitation to ask lots and lots of questions to most who stumble across it, I think.

I admit it never occurred to me that a forum such as this would attract frauds posting under multiple names for what sounds like the sheer enjoyment of misleading and manipulating others. That is pathologic for sure. At the same time, I still do not think that excuses or even invites rude, dismissive, preachy, and conclusory responses.

Our mothers all said it and truly wanted us to remember it: "If you can't say something nice, say nothing at all." I think mom really meant it and I think she wants us to remember it. Self-excusing wriggling about using harsh statements to avoid making the OP even more anxious would not, in my opinion, be endorsed by our mothers.

When chronic illness or personal tragedies strip us of our humanity, we are truly defeated.

I have no idea if I am risking being put in the ALSForums ejection seat as a result of these posts, but I hope others will see these as from the heart. And also from the brain.

 

[scaredwifetx]

''ALSForums ejection seat as a result of these posts". I can guarantee you that there isn't a ejection seat here. That's the most amazing thing about this forum. We are all free to say what is on our minds and we don't always agree with each other. I have been on here for over a year and although I haven't agreed with all posts...I certainly like and respect everyone here. This is the most caring group of people I have ever met. Mike that includes you!

Teppo, I have spent time posting answers to DIHALS and inspiration. I admit, sometimes, I may be a little cross but I believe with good reason. Moving forward, I will ignore the DIHALS section because I can't promise that I will always be as kind... as you think.... I should be.

I believe, that being kind, is trying to help someone... even when that means, telling them the truth. Telling someone they don't belong here... when it's clear they don't. Now, that may just be saving them. I was taught by my mother to be kind, truthful, and not to walk around on my tiptoes when its better to stand firmly on the ground.

 

[Nuts]

Tempo, you will not get ejected for stating your opinion here. As long as we are respectful to each other, we are good.

I remember thinking that people were harsh with DIHALERS in my early days here. After reading enough posts by those who were obviously jerking us around, I told one or two to move on myself. Others do have anxiety issues, and most say so at some point in their posts. We feel for them, but we are up front about our inability to support them.

I have seen posts by people who were later diagnosed, and those people received supportive responses from anyone who responded. They were not told that they weren't describing ALS. The last thing I ever want to do is to tell someone it sounds like they do have this monster, but I could tell from every other response that other members had seen what I saw. Across the board, testing was advised.

Others who have already been told by neuros that they don't have ALS are better off not reading here and convincing themselves their docs were wrong. Sometimes only being blunt with them gets them to stop posting (at least under the current alias).

I am very thankful to those who take the time to respond to the DIHALERS. When things are going very well here I try to help out, but the longer I deal with this disease the less tolerant I am of people who insist on diagnoising themselves.