Als

[olly]

i love house and er and greys anatomy :lol:
house does think outside the box,that is how he solves the complex cases.
i dont think we should ever admit to out neuro,s and doc,s we watch this,they dont like to think we know as much as them;-)
take good care.
caroline:-D

 

[lostinlouisville]

House

We just started watching House, my sister has watched since beginning. I borrowed her DVD'S of season one and just finished. Ready to trade them in for season 2. I never watch anything except FOX NEWS. It's a welcome change for me.

 

[lovelily]

Hi lost....House just keeps getting better! I LOVE that show. The final episode last season was awesome! Keep watching. :smile:

 

[lhagsjr]

Wright

I always get all my reports in writing. Ill mail or fax them to you if thats OK

 

[lhagsjr]

"Whining" People who Dont Listen

Maybe we whine sometimes because we are the unfortunate people who fall through the cracks, the undiagnosed. No we dont fit the normal age group to have ALS, no we dont get hit with the drastic effects right away, but that doesnt mean our symptoms arent real and it definitely doesnt mean we wont eventually be diagnosed.

Im a 29 year old man who was built pretty nicely. I had above average muscular tone/build in my shoulders/biceps/calves/quadriceps. Over about an 18 month span Ive seen it all go away very slowly. It has been DEVASTATING. The worst part about it is, certain things wont show up on tests so the doctors wont help me, and because the doctors wont help me my family things im OK. So IM all alone. In addition, I cannot move my arms without my shoulder jointing snapping and popping obnoxiously loud. Since I still live a normal life being undiagnosed I obviously use my arms a lot throughout a day. So by the end of the day my shoulders are extremely painful.

Do I want to be diagnosed with ALS? HELL NO! What I want is to improve. I want a decent quality of life back. And God forbid, if that isnt going to happen and I have ALS, I want a doctor to man up and tell me. Being in between is not fair or good for anyone. Not me, not my wife, not my employer, not the rest of the family.

Al, your a man who is looked up to by many people. I was surprised by your whining comment. Just because we arent diagnosed doesnt mean we are not in the same boat if not worse in some areas...

 

[CindyM]

Common, Lou. Get a grip. I would never put myself in the same boat as one of our PALS.

You and I joined this forum at the same time. We've seen PALS pass away, give up their jobs, get pegs, and so on. You and I still work, hug our kids, feed ourselves.

Sure, I would like to know what is wrong with me. Sometimes in the dead of night the fear sets in for me, too. But I would never ask people who have lost so much to feel sorry for me.

Please go back and read your last statement. Somehow you have to find it within yourself to be just a tiny bit more grateful for the life you now have. Your wife and daughter deserve nothing less.

 

[CindyM]

One final word, Lou, now that you have got my dander up. Al is not the whiner in this discussion. Not at all.

 

[olly]

lou

i honestly do understand everything you said in your last statement,i have been through exactly what you are going through.
i have gone through this for 9yrs and after years of tests to rule out ms and everything else i was told it is mnd last november.
but my neuro said sometimes they can not give a definate diagnosed in some untill autopsy.
my progression was very slow upuntill 2yrs ago,i have had mainly umn symptoms but some hypotonia and progressive muscle weakness so i am not the norm for pls or als.
so you see i am the same as you.
i have had to learn to deal with this illness,all the problems are still there and getting worse but i feel happier in myself in letting go searching for definate answers.
i can not work,need aids to walk and can just about do some basic day to day jobs.
but i feel blessed and very gratefull ,even humble when i read of all the pain and suffering pals and cals go through on this forum.
i have a funeral tomorrow,a lovely young man who lives with his mum next to me hanged himself last saturday,he was only 24yrs old,it is such a terrible waste and i can not understand it.
life is too short,there is so much suffering in the world .
you need to seek out a doctor you feel comfortable with to talk honestly about your symptoms.
you may never get a 100% definate diagnosed like me,cindy and someothers.
at some point you have to let go,no more if,s or but,s or why,s.
i have learnt progression is the most important element not the illness itself.
try to go a day then 2 then a week without consciously thinking about your symptoms/illness ,but concentrating on your family and other things.
i really hope you can find answers or at least come to terms with your unknown illness.
take good care.
caroline

 

[lhagsjr]

I understand...

AL has dedicated an unbelievable amount of time to this board and has gone through so much. All I did is say, I felt calling undiagnosed people basically cry babies wasnt right. Cindy jumped to the computer to immediately challenge me which is fine, but the fact of the matter is Al jumped out of line. Im not mad at him nor do I think he is a bad person by any stretch, just think the whiner comment is a little much and uncalled for, thats all...

Cindy, I would also appreciate if you didnt put words in my mouth. Never did I ask for a PAL to feel sorry for me. I justed asked not to be called a whiner..I also NEVER called Al a whiner, so dont know what u are talking about. That was the word he used for others.

Cindy, I cant hug my daughter because I dont have one YET. You see, Im only 29 years old. Started the symptoms at 27. What will you say if I eventually get diagnosed with ALS and die at say 35? At that point my kid would be about 5(my wife is pregnant) and my wife of 8 years at that point would be a widow. Would my family and I be allowed to complain then?

Dont tell me to be grateful and not feel sorry for myself.

 

[joelc]

Question for you -- why do you think you are going to have to die at 35? With the technology we have today you can see your child grow up and have kids of their own.

 

[CindyM]

Lou - I sent you a PM.

 

[Al]

Lou, if the shoe fits wear it. Read all your posts. I never called everyone undiagnosed whiners. You have done nothing since you came her but whine that no one believes you are sick. Who in Gods name will you believe? Maybe you would be better served on another foum. I've yried to be tolerant. Most of the others have been as well but enough is enough.

AL.

 

[olly]

Dont tell me to be grateful and not feel sorry for myself.

LOU
that kind of attitude will get you knowere,it will alienate you from family and friends.
yes we can feel sorry for ourselves but not to the point of self obsession.
i am so grateful everyday i wake up ,i am alive,i have food and a home with clean running water and so many other blessings.
there are tens of millions of people worse off than you or me,you need to think about this.
it puts things into perspective
and dont say thats them not me or i will loose my temper.
do you read the other forums?
like the caregivers forum or in memorium?
i think you should ,read what freddiesnetty and others go through and then tell me why you feel you should not be grateful.
i have tried to be understanding and help but untill you change your "me" attitude no one will be able to help you.
take good care.
caroline

 

[awieleba]

lou,

my thoughts are with you, you do have something, that is for sure. IT is hard having all these symptoms.
It makes all the difference if a doctor would say 'you have something, it may not be als..but its something and we need to look further'. It is a lonley feeling with the family if they think you are fine. WHen I stopped talking to them about it and insisting I was ill, they now ask me how I am doing. It is not that our famlies dont believe us, they just dont want to think that anything is wrong with who they love. So, when the doc says they dont see anything, they NEED to believe it. We know our bodies are not gettin better but it is a no win thing with all. Try not to think in the future, I know this hard. I feel like I live with a dark cloud over me and all that I do. I get it, but find the joy in TODAY. I will enjoy my day and then in bed at night when I am scared or feeling sad about the future and my kids, I cry. I let it out alone away from my family, I need that release. Then I wake up and smile and enjoy what I can do today, then cry at night. YOu get the picture. It works for me. This has made me better, I dont post pone things and I want to be the best mom and wife and friend and sister and daughter while I am here and appreciate my life. this has scared me into not taking my life for granted and I dont want 5 yrs from now if I am sick to wish I would have enjoyed this time when I can do things! Plus, I want people to think and remeber me for being strong and not some sad and depressed person. GIVE in to this, accept it and move on. we cant be happy untill we accept that this has happen, we cant do some things we love but we can wrap our arms around our family..you will hold your new baby and we can speak to tell our family we love them. we cant control what happens, the only thing we control is how we handle it

take care

 

[crystalkk]

Lou,

Congratulations!
When is your wife due?