new awaiting diagnosis

[fleecy]

Hi Everyone.... Sorry about the long post:cry:

I am new but have been going through the numerous posts here. I have so many questions that I don't know where to start.:confused: I do not have an official diagnosis but have a suspected one. I am sure you probably get tired of answering questions but I am scared and do not know who else to ask. I have read alot about als on the internet. I am caught between a MS, als and Severe pernicious anemia. The Doctor tells me it is definately neuromuscular. This is the worst part of anything waiting for tests then waiting for results.:oops: :)

My doctor is always talking about progression. So I I guess I will ask questions about this as I am unsure what he is refering to. I will give ou a bit of a history. In 2004 I started experiencing difficulty swallowing, I could not swallow liquids or things of soft consistency, pudding, water, saliva, or yogart. This was investigated with no narrowing or stricture, they were stumped. This went away, to resurface at a later date, I also experienced trouble with my voice, slurring words for 2 days then stopped, shaky voice when I talked but this also went away. I was having extreme fatigue and pain in my right upper arm also. It would be OK when I woke but the more I used it the more it fatigued until I could hardly lift it. I also started dropping things. You would be sure you had them then you would drop them. My arm gets somewhat better if I don't use it but fatigues if I do.

In Dec 2004 I was also experiencing some fatigue in my right leg that would also seem to come and go depending on how much I used it. I started having muscle fasciculations in my right arm that started one day and did not stop for two days then they moved to my diaphram and rib cage, I now experience them everywhere. I have noticed then recently in my hands with these twitches literally moving my thumbs. Midway 2005, I started experiencing weakness in my left leg, this stayed about 6 months with a slight foot drop, and then to my left arm recently, where I find it hard to hold a book to read, my arm fatigues. I have alos experienced fatigue in my jaw while chewing and my neck where my head feels like it weighs 100 lbs and my neck cannot support it. My breathing is also affected, although my pulmonary test just documented some diaphramic weakness. I have numerous other little symptoms that accompany this and will not get into this. I find most of these symptoms get better with rest but never go away completely, but the more I use them the more they fatigue.

I also experience spacisity and muscle cramps, and have some pathologicla reflexes, positive babinski, brisk reflex of the knee, positive rhomburg, diminished vibratory sensation, and have had some flaccid muscles. I also lost over 45 lbs but am regaining the weight. I have fallen.

My first question is... When doctors are talking about progression, I do not understand if they mean progression of one limb, or progression as in affecting numerous areas. Like mine going from my right arm to my right leg, to my left leg then arm, neck and mouth. Is this what they are talking about?

My Second Question is do you feel somewhat better in the early stages, my symptoms never go away but I can fatigue them to a point where they are unusuable. I can still walk, drive, although sometimes it is difficult to hold the clutch in my car down, the fatigue hits my thigh muscles and makes it difficult to hold and my right arm will fatigue when I shift gears on long drives.

Recently I went to the hospital ER because both my legs tightened up and I could not go up or down stairs, It was extremely painful and I was having a hard time getting up from a sitting position, or sitting down. Does this happen with this disease. I have experiences cramping in my toes, feet calves thighs and right arm but this was the first time I had experiences anything like this. I was treated with IV solumedral. Has anyone ever had this treatment with ALS?

I am confused scared and it has taken over my life. Nothing seems to get done fast enough. I would appreciate any insight that you could give me on this disease progression.

Thanks a bunch and take care:)

[ltr]

Your story sounds quite familiar. Many of the symptoms you describe is how my symptoms have been, and I think others who are undiagnosed on the forum as well. I am really sorry you are suffering these symptoms and I know that awaiting test results and diagnosis is horrible. The first thing that comes to mind to me when I read your post was myasthenia gravis. Please read the symptoms I copied from the website below. Though you only mentioned SOME of them, you don't have to have them all and they sound a lot like what you describe. If you agree, please visit the website and take it to your doc. I am very sure others will be posting to help you with your questions. Have you visited a neuromuscular clinic? That would be your best bet. I do not have als, but symptoms like yours. From what I understand, als is unremitting. The muscles never regain their strength. So, in my opinion, you do not have als, but everyone is different. Good luck. Leslie



* Muscles that become progressively weaker with prolonged use
* Muscle weakness that seems better in the morning or after resting and worse after activity or at the end of the day
* Drooping eyelids
* Blurred or double vision
* A change in facial expressions, such as a smile that looks more like a grimace
* Jaw muscles that tire easily, such as when chewing gum or meat
* Difficulty swallowing
* Slurred or impaired speech
* Weakness in arms, legs, fingers, hands or neck
* Shortness of breath

[Meg1]

You need to be seen at an ALS center and I would be careful about taking advice/opinions from people about ALS who do not have ALS. Presentations can vary greatly and even general neurologists don't see enough of the disease to reliably diagnose it. No one who hasn't examined you can give you an informed opinion about your specific case.

I can tell you a little about ALS symptoms in general (since I have it) and differences between ALS and MG (since that was my last differential). Cramping, spasticity, pathological reflexes, positive babinski and pain are not symptoms of MG. Pain is not a typical symptom of ALS although some PALS experience it. In the early stages, ALS symptoms do wax and wane. Other muscles compensate for weakened ones and we learn to accommodate our weak muscles. It's not unusual to speak clearly one day and slur words another. Some days it might be possible to maneuver a difficult button and some days in won't. In general, though, given the passage of enough time (and that period varies from person to person), the disease is progressive.

To answer your questions..

Progression can refer to increasing weakness or disability in one limb or area as well as to movement of the weakness from one area to another. Some people prefer to call it "regression" which is more descriptive of what happens, IMO, but perhaps confusing to some.

Your second question about variability of symptoms is, I think, answered in the previous paragraph.

Solumedrol is not used to treat ALS.

As far as determining what you have, an ALS clinic is the best place to go to evaluate you for ALS mimics, as well as for ALS itself. Such a clinic will do the proper testing which should include, at a minimum an EMG, SFEMG and MRI to rule out (or in) other disorders which have similar symptoms. Keep us posted.

Good luck.

[ltr]

Well, Fleecy, I guess that says it all. Disregard my entire post because apparently, according to Dr. Meg I was completely wrong and she always makes sure she tells posters in such a rude and inconsiderate manner. Actually, better yet, maybe a moderator can come on and delete my advice and opinions completely. You won Meg--are you keeping track of how many people you have gotten rid of? Do you do a cheer every time you get one more person not to come back? You should have been kicked off this forum a long time ago, but instead you have been allowed to get rid of really nice people who actually need the kindness from strangers. Looks like I'm the next one since JenniLee, so mark it down, I wouldn't want you to forget.

[fleecy]

Hi Leslie,

I am sorry to have caused you some discomfort. I like you am undiagnosed by they are leaning towards als AS I have had many tests done over the past two years. I have experienced some muscle wasting especially in my tongue along with fasciculations in my tongue. they tell me not many neuromuscular diseases will cause this. I really appreciated your input, as we all hope that this will be anything except ALS. Please do not allow someone else to upset you as we are all entitled to our own opinions and beliefs. I want to thank you for your input. I did go to the site and check it out but I believe it was already ruled out. I feel a little uncomfortable, being new here and seem to have started something.

Please, don't allow other people to discourage you as we all need the help and support, ideas, research, different perspectives and anything else you would like to contribute to people in need of hope and frienship.

Thanks for listening and responding to me.

Donna

[CindyM]

Thank you Annmarie for a reasoned and considerate response. I, too, hope Leslie doesn't go away and I hope fleecy feels welcome. I also have to say that I think Meg's technical information is apreciated by those who need detailed scientific facts. We have a lot of members like Al and Quadbliss and MT and a host of others who can explain how to cope and what to expect. Occasionally someone wants detailed medical facts, and when they do I am always glad to see Meg's answer.

The question, Meg, is how you view this board. There is a school of thought that says only the person walking in a particuar set of shoes can understand a given issue. Myself, I am fron the school of thought that we are all humans, trying to do the best we can.

Cindy

[liz]

Donna -

You did not start anything. This "bad blood" predates your joining the forum. I'm sorry you were made to feel uncomfortable by others' posts and I hope that everybody involved can take a good long look at how their behavior effects newcomers. You definitely do not owe anybody an apology.

That said, welcome to the forum. I hope that you will find it informative and supportive.

Best wishes,

Liz

[Sunshine]

Leslie,

I agree with you. There are many people on this site that have not been diagnosed either way yet. It seems that it can take many years to be diagnosed with some people. Are they supposed to just sit back and not ask questions or give advice from their experience?? People are only giving suggestions. We are here to help people not insult them. Yes, the people who have been diagnose can give better advise but everyone is different. Those who have been diagnosed more than likely had to wait a long time to get that diagnosis. Sometimes it take just a kind word to get a person through the day. Some people don't have family or friends to talk to about this. This is their only support system. If people don't have something supportive to say just don't say it at all. So Leslie, others need you and would like for you to stay. God Bless. Sunshine

[Jamiet]

Fleecy,

What you state is pretty concerning for ALS. You should get to a clinic soon. Your story is alot like mine and i'm undiag, but attend the clinic in June and are abou 99% sure, it will be dx day.

There are differernt things that work for different people. My friend is a LPN for the ALS assn. Her daughether has had it for 7 years.

Whats worked for here, was IVIG (yes, that's what you mentioned), minocycline (it's in the final phase of trials and fixin to be approved) and of course, antioxidants and a few other things i don't know of.

There are lots of wonderful people here that will help, answer your questions, please ask. I like answering....so keep me busy.....lol

Take care

rgds,

jamie

[patricia1]

I too stopped posting I find people want to ask questions but when you answer them the way they dont want to hear they get all upset I only said what I experienced aand if it scares you I am sorry, You have to walk the walk to talk the talk and half the people here are very sick and the other half think they are sick,and some dont have anything else to do, THIS IS A TERRIBLE DISEASE. and if you cant take what we say then you shouldnt be here. I rather read the post and keep my remarls to myself to avoid upsetting anyone Pat:evil:

[joelc]

I also took a sabatical from posting. I needed time to focus on something else other than this disease. I got so busy I did not have time to think about anything, including this disease. We each deal with things differently, some research, some deny, some get angry, some cry, etc. That is what makes this forum so great - there is someone that fits each coping mechanism there is.
We need each other and need different perspectives on this disease. It is healthy!
What we don`t need are personal attacks or overly sensitive people that get upset if someone has a differing experience, or opinion.
Sometimes we read something and take it personally- I am guilty of doing this myself. But if we step back for a minute and re-read....it might not be a personal attack at all and turn out to be helpful information.

Let`s love and support one another, and enjoy our diversity! We really need everyone to stay here and keep posting!! Please find the strength and forgiveness to do this.

My 2 cents, for what it`s worth.

[Meg1]

Cindy --

Please read the previous two posts from PALS. They make the point I have been making to you in PM's. The nervous nellies who don't even have ALS, who pass out incorrect information as if they're the oracle of Delphi and are constantly having their feelings hurt are running off the people who this form is supposed to be there to help. I know I'm not the only poster who's been telling you this. Someone needs to let the worried well know that there are other forums for them and this is a forum for people with ALS.

[CindyM]

Hi Meg- I've sent you a PM on this issue. BTW I like the factual information you gave last night on the value of medical studies. I appreciate your analytical turn of mind. Enjoy your day, Cindy

[nspoc]

Hi everyone-

I think this thread has moved a little from Fleecy's question - but I do not know where else to put my comment - so here goes.

Meg1 seems very angry at the worried well. At first I wondered about that myself. Then I saw the post from terrified Chad Bowman asking for support and help - he also had not been diagnosed, but was in the process at Mayo. The next thing I knew he had died. As I understand it - he never made it back from Mayo.

I understand that a very few people have no chance of having ALS - but they are still worried that despite the evidence it might be true. Their terror is real. I know they could take their problems elsewhere - but my compassion extends to them, as well.

As for Meg1 - I really appreciate her scientific and data-based approach. I really find it cuts to the chase - and is very helpful to me. I am very sorry that the frightened people are so upsetting to her - I feel both compassion for them, and also a connection to Meg1 - in fact I really feel I rely on her!

After Chad - I will never again assume that someone's fright is out of proportion. I am haunted by his fear, moved by his kindness, and very sad for his mother and fiancee. I have been changed by the experience of encountering him.

I hope people will not leave this forum - I believe Meg1 has her right to express pain as well - and she seems very distressed by people who might take advantage of the compassion of PALS. I can see her point. But pain is pain, and I have time for these people, too.

My advice - let Meg1 be her scientific, contributing self, and accept her feelings.

At the same time- let those who are so inclined comfort the terrified - it hurts no one.

In a public forum like this we all have to seek out that which speaks to us - and screen out the annoying. I have found tremendous value here, and growth. One of the valuable people has been Meg1.

Best to everyone - Beth

[jimercat]

BETH

are you a Tibetan monk? that was well said. thank you.
cj

[Sunshine]

Hi Beth. I agree with you. You stated it perfectly. I wish I could put my thoughts down as clearly as you did. Maybe that is part of the problem. We are communicating by the written word and not face to face. It is hard sometimes for people to express themselves this way. Maybe we all can think if we word things just a little different it might not be as offensive to people but it still gets their point across. I don't know. All I know is this site has been wonderful with information even with the people who are overly worried when they don't need to be. Meg has given great advice but at times seems too harsh. My husband was told he may have MND. We have had many obstacles with the health system, etc. If I can help one person with any kind of helpful information or comfort, I will be happy. God Bless everyone. Sunshine

[nspoc]

Good Morning Sunshine and Jimercat -

Thanks for the good words! I really think jimercat is right - sometimes your own feelings are so big - it is hard to see how your words impact others. Not just the people they were intended for - but the many people who read these forums before deciding to jump in as members.

I have also had a problem with sounding harsher than I mean to be - and I have an almost Ph.D. in psychology! I think I get carried away with making my point. Anyway - go easy on each other - this disease stirs up so much, and it can result in brain deficits as well. None of us REALLY knows what is happening in the writer.

For my part - I am always struggling with toning it down - but for me it is verbal - flashing eyes, excited voice - the whole nine yards. I thank God for the written word - gives me a fighting chance to temper myself.

Hang in there everyone - You are all so amazing - you cannot know how valuable you all are to me. Beth

[Jamiet]

Ok everyone, i've somewhat kept my 2 cents to myself.....now, i'll give my unbiased opinion...

I don't know if any of you have noticed, but i rarely start a thred, maybe two or three, and one of them was for a survey for newbies to read, so they wouldn't have to ask so many questions and could get quick answers. The response to the survey, was...what can i say..somewhat negative. I usually offer the knowledge i've obtained when i embarked on my massive research project when i got sick.

There is alot of anger in this, for persons diag. and undiag.

it's best said, there is a place in this forum for PALS and then..a general forum for discussion, which is where i am writing now. Nothing more need to be said, it was a great point.

I don't hold things against others for being angry to another not officially being sick, but, i know, probably 75% of the newbies here are sick, in some way shape or form.

I had the pleasure of communicating and becoming very good friends with the Chad that was spoken of, and i had actually, given him the entire knowledge base i've acquired on MND, ALS and it's relatives (which i will discuss in a few). He and i had become very good friends, in a relative short time, and had pretty much come to the conclusion that he had ALS, before he was diag. I miss him and his courtesy, even while having the fastest case of ALS i've ever read about he was supportive. If we had done to him, what we did to some others, imagine this man's lonelyness in his final months. I think this was the purpose for the general discussion.

Next, i know there is some question as to the people who are diag, who offer advice, such as myself. I'm undiag and constantly offer unbiased advice. it's my nature, all i know how to do is help people. I've always been very independant, and the thought of possibly having to depend upon people for the rest of my life is ....well...scary. If in fact, it turns out this is not MND what i have, then, i've definitely done a good duty to others, either by telling them they didn't need to be here or telling them to get to a Dr or simply offering a shoulder to lean on......

When all this started with me, i emabarked on a research project and in fact, i think i actually know more (About ALS) than most of the neuros i saw. This is actually a joke between myself and the ALS specalist i am seeing.......she doesn't even tell me anything when she sees something...she looks at me and asks me what she just found..... This was also the case while doing the EMG.... She will look at me and ....just say...you know what i'm about to do don't you....and smile.

A little history on myself, i'm 32, I'm a CPA and CFO (if you have income tax questions, i'll offer free advise to all here -- typical me). I paid my own way thru college, never asked for help, sent out on my own at age 16 to fend for myself. By age 31, i have worked myself into a partnership of a company turning over excess of $50M per year, doubling it every year since my joining at age.....well....23. So, what i'm trying to say is....i'm not a "dumb" cookie and a little common sense has always been on my side and work ethics have always been top priority. I'm constantly told...i don't act 32 by my collegues, that, i'm better than all of the other CFO's they've ever worked with....so....what do i do with this gift......give it to others..... I get a kick out of training "rookies", it's a pleasure and everyday, that, i can teach someone, something new...is a successful day.

Due to this fortunate circumstance i have been gifted with, I am lucky enough to have all the free time at work i need, to research. Since, Aug 2006, i probably have, well over 1000 hours of strickly reserach into Neurological problems, and over 1/2 of them into ALS. I've probably studied, 1000 - 2000 cases......

I have a very young family - two kids 6 yrs & 11 mos and alot to loose, so trust me, i'm not here for fun or to get support from someone in need more than i am.

I think my story, for the most part, is similar to most here....meaning, everybody has alot to loose and we all have accomplised our own goals at some point in time...and to ..well.... have it all taken away....is to say the least....not fair..right?

Nothing in life is fair and nobody ever said it would be easy.

let's all keep a smile on our face, remember courtesy to our neighbor, don't burn any bridges..(you never know when you have to cross it again)...and just remember this phrase... Each day you wake up....and open your eyes...it's a blessing...everything else...is just a bonus, even the bad stuff!

Take care all and lots of love (i'm sure most of you are now bored about hearing about me now...lol)!

Rgds,

Jamie

[Al]

Someone made a suggestion to make a new section. Hopefully this will get things back on track and we won't lose new members or old.
AL.

[Jamiet]

ditto al...

[liz]

I must totally be missing something here. I wasn't hearing at all the old members did want to interact with new members. I also wasn't really hearing that PALS didn't want to interact with people who haven't been diagnosed yet, although that's being put out there now. I think that a complaint that was about just a few folks on this forum has been overgeneralized. You can count me among the confuzzled.

[Al]

Well here we go again. Some members were complaining in PM's and here but not as strongly here that there was a problem with the forum. In an attempt to help things we decided that another forum would be good as then people asking about diagnosis questions wouldn't be starting in the middle of unrelated threads and getting them off track. Hopefully this explains things a bit better. We can't please everybody I know but we are trying to please as many as possible.
AL.

[Frizzel]

Thank you for sharing your story Jaime...I agree to not burn bridges since we never know when we'll have to cross them in the future. Enjoy those little ones you shared you have. It helps me know you better.

Al, forums must be a challenge because we are all coming from different places and we can't see or hear the inflections in our voices as we share. You all have done an excellent job keeping this forum flowing. Hey, so we go over a few waterfalls, splat up on the side of the banks of the river and a few are hanging on to the lifeboat in rapids beyond earthly control. Appreciate you, Captain, Mike, CIndy and so many others who let us all come and have a safe place to be who we are. I know there are many days I feel like I'm hanging onto the limb of a tree in the middle of the rapids. It's tough! AND I for one pass on my thanks!


Frizzel

[CindyM]

Thanks Frizzel. I've been quiet during this discussion-at least on the threads. Instead I've spend time PM'ing a few folks and one thing I think we realized is that everybody brings something to the table. We've been lucky in the past in being able to get to know each new member on an individual basis, an important distinction when strangers communicate but more so when said strangers cannot communicate face to face.

Now that we've "cleared the air, " we can get back to the thing we do best-supporting each other! Cindy

[Jamiet]

Frizzel,

I'm gonna get a life raft.........otherwise i would sink pretty quickly....LOL

Ok, hope i got you all laughing now....

Well said....

rgds,

jamie

[paula-jane]

I've read this thread with interest.. wrote out several responses.. (all of which I deleted) and then just sat and thought. I appreciate all points of view. I think we benefit from hearing different ideas and points and advice from all walks of life. I have been "put in my place" by Meg1 several times and as a result.. I rarely take part in the forum. I don't have ALS.. but, I have been nursing my Mum and watching her die every day. To say I don't have something worthy to contribute to this forum simply because I do not have ALS.. is wrong... I know sooooooo much about ALS and I have been to every doctors appointment and I have watched every change and every devastating thing about this disease. People are people and some people are empathetic and compassionate, and some people are only too happy to point out our short comings and be negative. We can certainly take on a dose of reality just as much as we can a dose of humanity. My life will never be the same because I have loved someone with ALS, do not forget about the family left to go on without their loved ones. I will never look at life the same way again. This disease effects and affects. My Mum is dying... quickly, and I will never be the same again. Meg1.. although you are very proficient at the technical stuff, and it is appreciated.. perhaps, you can learn how to get your point across without seeming to sound so angry and condescending.

[Frizzel]

I have a question for you. If there where a couple of things you would like to share for those who are caring for those of us with MND's what would they be. What advice would you share since you are still caring for your mum who now is dying.

We applaud those who make our lives easier in the transitions of these diseases. My husband is amazing how he carries me when I can't walk and who steps in for me at times when well intending people say I have to try harder to get well.

I applaud each of you and thank you for being the glue at times that keeps the sanity from draining from our souls. I read your stories, I know from my own husband the reality of looking at us feeling helpless and wondering if this is something you will wake up from and it will all have been a misdiagnosis or a dream.

The reality is I don't know what it is like to be a caregiver to a loved one who is dying before my eyes. Thank you Paula for the reminder to remember each of you. Whisper to your mom, "Thank you mum from the ALS forum for bringing me into the world, to love you now as you have loved me."

Frizzel

[Al]

Paula-Jane. Do not feel intimidated by anyone by anyone on this forum. Your opinion is valued as much as anyone's here. There will always be people trying to rain on your parade. Put up your umbrella and crap deflector and forge on. We'll try to rein in the people that get too miserable with others. There is no excuse for that.
AL.

[CindyM]

Hi Paula-Jane. I didn't realize you are a care-giver. Caregivers are special angels and deserve recognition, as every PAL will soon realize when the time comes that he or she can no longer brush his or her own teeth.

ALS is a devestating disease that leaves some people feeling angry and bitter. We've discussed on previous threads what it means to a care giver when that anger spills over onto the person who is giving up their time 24/7 to take care of them. It is unfair and just plain wrong. As I say to my family, regardless of why I am ill, the fact that I am sick does not give me the right to be a jerk.

What happened to you is not excusable. I apologize on behalf of us all because I am truly sorry you were mistreated. If anybody wants to send you a PM, letting you know they appreciate what you do for a fellow PAL, now would be a good time to do it! Cindy

[paula-jane]

Thanks for the responses.. it was wonderful to hear from you all.
To Frizzel.. My mum is incredible.. no matter how tough it is (and it is very tough right now) We get her up in the morning and get her going with the routine throughout the day. Our day involves physio, OT, speech therapy, feeding, dressing, toileting and loving. It's a tough day and we've enlisted the help of homecare combined with a lifetime of friends to help us keep her at home. As my mum is deteriorating faster than the system can help us (assistive devices etc..) we are constantly racking our brains and coming up with our own ways and gadgets to help make life easier for her. Friends have done fundraisers and we are humbled in ways I've never known.

What do I want you to know? I love my mum and there isn't a thing I wouldn't do for her.. what a caregiver would probably want you to know is: You are so very worthy of the same love and time you have given to the loved one caring for you now. The loved one knows that if the roles were reversed, you would not think twice about giving the same time, love and devotion you are now receiving.
I do not get frustrated with her, I do not get angry and I do not consider her a burden. We love her and it is as simple as that. I grieve terribly and I celebrate often.

[CindyM]

Paula-Jane, this is National Caregivers week in the US. Give yourself a big pat on the back. I am sure your Mom appreciates what you do, even if she is too sick to acknowledge it. Cindy

[Al]

And we appreciate your sharing with us too, Paula.
AL.

[Meg1]

I've read this thread with interest.. wrote out several responses.. (all of which I deleted) and then just sat and thought. I appreciate all points of view. I think we benefit from hearing different ideas and points and advice from all walks of life. I have been "put in my place" by Meg1 several times and as a result.. I rarely take part in the forum. I don't have ALS.. but, I have been nursing my Mum and watching her die every day. To say I don't have something worthy to contribute to this forum simply because I do not have ALS.. is wrong... I know sooooooo much about ALS and I have been to every doctors appointment and I have watched every change and every devastating thing about this disease. People are people and some people are empathetic and compassionate, and some people are only too happy to point out our short comings and be negative. We can certainly take on a dose of reality just as much as we can a dose of humanity. My life will never be the same because I have loved someone with ALS, do not forget about the family left to go on without their loved ones. I will never look at life the same way again. This disease effects and affects. My Mum is dying... quickly, and I will never be the same again. Meg1.. although you are very proficient at the technical stuff, and it is appreciated.. perhaps, you can learn how to get your point across without seeming to sound so angry and condescending.

My posts speak for themselves but I do hate it when they are mischaracterized. For the record, I have had exactly one interaction with paula-jane (not "several") and it was cordial, not "angry and condescending." Here it is in its entirety:

Quote:
Originally Posted by paula-jane
I know that there are many people on here who have experienced a positive diagnosis for ALS and it has turned out to be something else.. and of course the opposite happens as well.
.
Reply from Meg1:
It's pretty difficult to get an ALS diagnosis but I know that a few people have been diagnosed in error--that's why I always advise visitors here to be seen at an ALS center. But I certainly don't think there are "many people" on this board who received an incorrect ALS diagnosis. Unfortunately--or perhaps not--the opposite happens all the time.<end quote>

[CindyM]

I do not get frustrated with [Mom], I do not get angry and I do not consider her a burden. We love her and it is as simple as that. I grieve terribly and I celebrate often.

Paula- Spoken like a loving and caring daughter that you oviously are. Your Mom must have been a great lady to raise such a wonderful woman.

To all our PALS and CALS- take a minute and do something special for yourselves. Life is short and at the end of the day, all any of us really have is each other. Regards, Cindy

[Frizzel]

grieve terribly and celebrate often

That could be the title of a care giver's manual. That stuck a cord in me so deep I could hardly move away from staring at the screen when I read it. Thank you for sharing about your mum with us. Very personal and yet it soothes my soul to know there are caregivers like you out there.

I personally need to be reminded of what a sacrifice my husband makes for me every day. I also know I would do the same for him.

AMEN Cindy, caregivers need to take time for themselves, too.

Meg, we all especially in writing know that our words can be misinterpreted because we are reading and aren't hearing the inflection of how the words are being spoken. ALso, at least speaking for myself, if I'm in a certain frame of mind I hear things out of context. In all our imperfections my hope is we trust that we all will cheer each other on when we're down and rebuild the parts of the bridge in this forum that get a little worn.

CHeers to spring and the canvas of color it brings to our lives. Frizzel

[Al]

OK LETS LET SLEEPING DOGS LIE. As far as I am concerned this petty bickering has to stop. Everyone has made their point. Now let's get back to the business of support. I don't usually get mad but this is really starting to T me off. Play nice or get out of the sandbox kids.
AL.

[DavidGL]

To all,

When we speak to one another in person, our eyes and our smiles complete the communication picture. Words lacking emotional content may be accepted as helpful when the eyes are twinkling and lips are curled into a knowing smile. We don't have that add-on when offering our thoughts in writing. May I suggest, when we are reading the written word that we all take a little time to imagine a friendly face while reading them. Then parse the words carefully. Read it three or four times to see if any unkindness felt there evaporates. The first order of charity is to desire to find all good in our neighbor's words and acts. If we want to find it, we will.

Of course there are exceptions. If someone, for example, were to say "you, sir, are a cretin!", we may rightfully feel offended. Even then, things will go better if the words are just ignored--or, perhaps, replied to with a sphere of levity. Of course, in the physical world, we may best respond with a solid and resounding physical strike.

Yes, I do jest.

Meg1 is just forward. She is expressing an informed opinion and uses her phrasing clinically. It's her style. Adjust or ignore. OTOH--maybe Meg1 wants to try and soften her approach since it does seem to annoy some people. I shrug.

DavidGL

[quadbliss]

I find the face icons helpful in expressing the tone intended in my posts. I learned early on, they are not just a toy, but a useful tool.:-D

Mike

[CindyM]

I've been blessed with people in my life that want to support me and know how to do it. Their love and intentions fill me with gratiude. From recieving this kind of support, I learned how to offer it in return.

The best we can do is follow the advice that Mike and David and Frizzel and Al have provided, and hope that people will feel welcome and safe from the stress that coping with a debilitating disease brings into the lives of ourselves and our loved ones. JMO. Cindy

[Carol Deboer]

Hi Guys,

I have read this thread with interest. Lots of emotions here. Having moderated this site for the past couple of years, and being one of this forums first members, I am concerned that this is a complete battle of wits of who knows more than the other. I am in 100% agreement with Al. Lets move on, enjoy each others knowledge, knowing that we are all in different stages of this ALS THING. Having lived it beginning to end, I wish that you all keep an open mind and just let the BS go. Support each other, and make your words sweet, you may have to eat them later.

Blessings to all,

STAY STRONG ....... Carol D.