If you're new to this forum, and worried you might have ALS...

[rose]

Finding yourself in the grips of fear, whether it is the nagging doubt, or, all consuming panic causing variety, may be what caused you to find us.

However, we're neither doctors, nor in possession of a crystal ball. Please take time to read the "stickies" at the top of this forum page. These give the criteria for an ALS diagnosis, along with other valuable information. This can arm you, enabling you to deal with the uncertainty you're facing.

Before you ask your questions, and give a long history of why you're afraid, please use the "search" feature, and find out if some/all of your symptoms have been discussed before.

By doing the basic groundwork, you will learn that ALS does not come over a person all at once, that it rarely presents with sensory issues, that even though there are exceptions, it mostly affects people in middle age. .. I could go on, but hopefully I'm making my point without having to do so.

We lost a very dear forum member this week, and the loss is felt tremendously. Because of this you may find that not many of the forum veterans are in any frame of mind to answer questions that have been asked so many, many times before.

Above all, understand that this is a support forum, not a Diagnose U forum. Your best resource for finding out what is wrong with you is face to face meetings with as many doctors as it takes, and as many tests as it takes. The road to diagnosis can be long and frustrating, many of us understand how overwhelming it can be. But, educate yourself before asking others to donate their time to tell you what you can learn by some time spent researching past posts.

Here is a short list of answers to potential questions

ALS is not about how something feels, its about how something does not work, that used to work.

ALS does not come over someone in a matter of hours, or days.

Remember that ALS truly is a rare disease, and know that "Dr Google" steers many to fear worst case diseases, hence, its best to not listen to this particular doctor, and instead go to, and listen to, an actual doctor.

If you don't trust what your doctor has said after examining you, and interpreting your test results, go to another doctor.

Remember that neurologists have over 10 years of training just to become a general neurologist.

Remember the medical community has no reason to try to shield you from the truth about your condition. Try not to read extra into what they tell you. If you're told that a neurological cause could be possible, you are not being told you have ALS.

My heartfelt advice is to not squander your time here on this earth letting fears, founded or otherwise, rob you of what truly matters. If you've little ones, or any sort of loved ones, THEY matter so much. You can't get time back, no matter how you spend it, time is still gone once its past.

good luck to each of you.

 

[GlenBrittle]

Well Said Rose , Well Said.

 

[Just J]

Thanks Rose. I wish this sticky had been here two years ago when I found this site. Thankfully though I didn't go into panic mode. Very good advice, particularly on the "search" feature. I find I don't use that enough even today, but should before I throw out a question. My husband and I did just as you suggested here....went to doctor after doctor after doctor until we finally found the right one.

 

[feebee]

Hi everyone, I have read all the posts and totally understand the quandry of the "do I have ALS " forum. I have been through testing for the last 6 months, have a considerable number of signs pointing to ALS but my neuro elected not to emg me at this early stage. He has said he can't tell me if I have ALS for another year unless something happens in the meantime to move it up the list of differential diagnoses. So I am truely in the waiting line ... like you must have all been at one time. We fit into no real support group.... I posted twice, I am not a hypochondriac , I had been give ALS as a possible cause of my symptoms and being a vet knew only too well that they fit the profile. I went to the "do I have ALS" thinking it was appropriate but quickly withdrew from posting from a huge guilt attack provoked by an angry response. It is the most horrendous thing to have a diagnosis which removes the benefit of the doubt .. which I guess I still have depending on what happens. I still have to live and function with the same symptoms but have decided that I have done everything to rule a condition that can be treated or requires early intervention for best outcome. If it is ALS then nothing can change that and I am getting on with my life. That's why I stopped posting.... I felt bad at upsetting people, didn't think I belonged here and chose to try and ignore it and look after my family. Maybe you need to address whether the section of "Do I have ALS" is appropriate at all on your site.... it seems to me that it upsets alot of your members and I don't believe you can judge someones fears as valid or otherwise over a post or their ability to express themselves. I wish you all the best to everyone and apologise profusely to all those that have been angered and frustrated by my post or any others like it. I also thank you from my hearf for checking up on me. I will come back if and when I have a conclusive diagnosis. Heartfelt best wishes to all.

 

[brooksea]

That was very well thought out feebee.

I've read your posts and don't think you fall into the category that most pALS on the forum would call "ridculously paranoid about ALS."

People seeking advice about their symptoms often ignore the advice given by those that are living the disease. That is where the frustration comes in.

I hope you do not have ALS and that you will find the answer to what ails you.

And, thank you for serving your country! (Or serving animals?)

 

[feebee]

Hi CJ, although I think it is a worthwhile profession being a veterinary surgeon - it is not as worthwhile as serving my country ! Unfortunately due to my degree of incapacitation at present I don't feel able to serve anyone.... family included!
I appreciate your response and kind words. cheers

 

[indigosd]

Rose, such words of wise advice! Maybe newly registered individuals that want to post in "that thread" should have to sign that they have READ these sticky's PRIOR TO BEING ALLOWED TO POST!

feebee, your post here was eloquent and I thank YOU for your concern, respect and I soooo hope that you do not have this disease.
He does raise a excellent point, "Maybe you need to address whether the section of "Do I have ALS" is appropriate at all on your site.... it seems to me that it upsets alot of your members and I don't believe you can judge someones fears as valid or otherwise over a post or their ability to express themselves." That is such a true statement. Maybe we also need to have guidelines for the PALS & CALS to follow if they choose to reply in that thread...?

I am just soul sad at all that has been going on.

 

[Twinsmom]

I was just thinking the same thing today!

Maybe our brilliant moderators and administrators can figure out a way to make new members go through some type of "tutorial" where they HAVE to read the stickys before they can post!

It's so sad to me the turn the threads took these past few weeks. I'm sooooo thankful that you all DID read the "Is this ALS" thread when I came on, though, because you were all so encouraging and supportive! That's why I peak in periodically-I pray I can be the same source of comfort and support you all have been for us!

Peace and prayers!

Get ready to HOWL soon!:mrgreen:

 

[olly]

well said rose.
i also agree,unless they come with a diagnosed already people should be asked to read the stickys below before being able to post.

 

[JeffP]

i believe that to if they read the stickys im sure there would be more peace and the ability to help one another then being wrapped up in nonsense

 

[canfiet]

Rose: So eloquently put, I'm so jealous of others that can speak so well. I'm a lurker on all forums. I've missed most of the drama lately. I was curious...I chose to read some of the posts that were still here. I'm afraid of what the missing posts might have said.. some of these were just not nice at all. I'm not here to be critical of anyone. I do want others to know that when I joined the forum, I didn't always feel welcome. It is of my opinion that all members could do better and we all need to be reminded of the golden rule. "Do unto others"....

I lurked on here for probably six months. I was in "the land of the unknown" for what seemed like forever. I posted something and a "Senior member" was quick to tell me to use the search feature. I didn't even know anyone or anything about the forum...I still find it hard to "search" for questions. Sometimes it's just nice to "chat" with someone. Especially when you feel all alone with this journey we've been given. I also think that wee need to be more considerate for everyone here. I get nervous on PLM if I have a different opinion on religion, politics, treatment options, healthcare, physicians or anything that others are chatting about. Funny, how we think we all have the "right"opinion. Even I'm guilty of that.

I've even thought that I've offended someone because I've had a different "take" on what was posted. We all have the choice to comment and/or read the posts that are here. Since I am a physician, I've always been very careful of giving advise to someone who is so worried. Especially without all the facts. The information we give is opinions....all of us are affected differently. We should remember this. My specialty is not Neurology so I come on this forum as a pALS. It took me forever to figure what that was - BTW.

I should be more careful to not hurt anyone's feelings. I hope everyone can start to take something good away from all this drama.

I Hope This Finds Everyone Having a Good Day! I'm not .....so here I am . Giving my opinion and hoping to help someone who is having a tougher day than I am. Hugs to All! Teresa

 

[Twinsmom]

I've learned over the year I've been on this forum, to try and not "hear" the words I am reading, because when I put my own tone and am often, wrong and can misinterpret someone's message...one of the dangers I guess, of a chat forum like this.

I think it's also easy to forget that the PALS here live day and in and day out with this hideous disease and sometimes just don't have the patience for nonsense anymore. .A very dear friend on this forum explained it to me this way...

A PALS has 10 gold coins to use each day. Each activity costs a coin. Something as simple as going onto the internet, or going for a drive, uses up coins...getting into a heated debate uses up coins. The more energy needed, the more coins used. Once those 10 coins are used up for the day-there's nothing left. Rest is the only thing to do. And recovery to gain back those coins sometimes takes longer and longer.

I think that the directness and lack of delicacy is more due to having run out of coins for the day-not anything any more devious or hostile than that.

And the CALS are faced DAILY with trying to find a way to be with courage and with grace as they love their family member through this hideous loss. To watch the person of your heart gradually lose all their abilities...piece by piece...well, my husband thinks my role in this is even harder, because I'm the one that will be left.

Taking the time to think through a "politically correct" or more gentle way of saying something takes effort, and the effort needed to keep myself in a place of grace and peace is often all that I can do. I want to be able to love my husband through this without breaking into tears at each new challenge, and be able to love my son through his disappointment that his daddy can't help him learn how to ride his bike, because "daddy's muscles get tired so fast"...I don't have anything left for tender responses to those on the forum some days...it just is too much. And the gift of this place is that it's safe here-I don't have to keep up my guard...at least I haven't...now...I'm not so sure.


anyway-all that to say, that I've come to adore the PALS and CALS on this forum, and if any unkind or hurtful words continue to be slung...well, it's rather petty and tragic.

Peace,

 

[ValRunk]

I'm sorry you've been made to feel unwelcome! I'm new here and, although I haven't been shunned or "yelled" at, I very often feel unwelcome. But, I'm willing to admit that it is very possible that I have not come across the way I wish to. I don't FEEL unloveable but perhaps that is the feeling that I give others! Although my diagnosed is of PLS, and I have been lucky enough that is has been progressing slowly, I very often feel that I have nothing to add when there are people here that are suffering from debilitating issues! I guess, what I'm trying to say, in a looooong way is that, no matter how I feel right now, I just keep plugging away because there may come a point when I NEED to be here!:?:

 

[Twinsmom]

The fact that either of you consider the possibility that you may not be coming across the way you'd like, and not becoming all defensive and hostile, pretty much takes off the list of those I was referring to. We keep coming back, because we NEED to be here...we all do...thank you for your openness and willingness.
Peace to you both,

 

[BettyJ]

Where are these stickies that you have mentioned. I am computer literate and can't find them