View Full Version : It Just Blows...
lhagsjr
12-03-2007, 12:56 PM
28 Years old. I should't even know what ALS is. Doctors wont say it because I can talk and walk right now and Im so young. But its ALS. It has RAVAGED my body. My arms and legs are pathetic. How can this happen to a 28 year old good person?
Clbrink
12-03-2007, 01:14 PM
It shouldn't happen to anybody, I agree it just blows!
Hopefully this is not the diagnosis for you, you are very young, when my husband was diagnosed 4 years ago he was 36, that was young, the doctors were surprised.
There are many other things that appear to be ALS, before they say you have ALS the will rule those all out. Try to stay positive, I know it is difficult!
Tina
patricia1
12-03-2007, 10:42 PM
After seeing seven different neuros I relized that they really dont know much about the brain. It is still a mystery.And some of us have dx of als and it maybe something they dont even know about They are still learning. the nervous system is quite complex. There are many variants of ALS some people die in 6week after dx and like Hawkins are here over 25 years. I remember going for massages because of back and leg muscle pain Maybe I had ALS then I dont know. But before I was dx it was very obvious. I guess they dont want to give a death sentence unless they are very sure. And even then I dont think they are sure. Pat
crystalkk
12-04-2007, 11:09 AM
Lou,
I thought you your emgs are pointing to myopathy.
Did you ever go back to the Nuero at jefferson?
Why don't you try to get an appointment at john hopkins for myopathy
explain the situation to them.
Or thet least see a rhuematoligist.....Nuero's don't always have the answers.
If that does not work see an endogrinoligist.
I believe at john hopkins they will all work with you together.
Leslie even had her muscle biobsy sent out there to be evaluated ask her about it.
Yea Lou....Johns Hopkins Myositis Clinic is where I am going next month and since you showed signs of myopathy that would be a good place for you to get some answers too. You see a whole team when you go, neurologist, pulmonologist and rheumatologist. Just a thought.
PS..you never answer us when we ask you about your myopathy diagnosis and I think some of us are wondering why there hasn't been follow through with it.
crystalkk
12-04-2007, 04:53 PM
Leslie,
Your right he never returns an answer when we ask about it.
lhagsjr
12-04-2007, 05:59 PM
When I had the EMG on Halloween the Neuro who did it said possible Myopathy(2nd time and 2nd Neuro who said this). This is when I was excited because I thought they were on track to figure out what was going on. When I went to my follow up appointment to my neuro to talk about the tests he said inclonclusive and he didnt think I had anything Neuromuscular. Of course, I was devastated again with no answers.
I wouldn't let that go Lou. As you know myopathy mimics ALS and that could be the answer to your problems.
crystalkk
12-04-2007, 09:01 PM
Lou,
Not all myopathies are nueromuscular. Some can be metobolic.
That's why we keep saying go to rheumatologist.
scared of als
12-05-2007, 12:51 PM
Why do you guys always seem so questionable and confrontational about everyones dx. Why do we seem so mean. Leslie, you have been dx. with myopathy which is not als, should we question you? just aksing..
lhagsjr
12-05-2007, 01:52 PM
what u are talking about? If you are talking about BillyD, he is doing the same thing u did when u started on this board. 15 posts a day about the same thing but doesnt listen to anyone else. You have gotten much better and are a good member of this community now. He is taking over the board now by posting 18 times a day. He just needs to relax.
scared of als
12-05-2007, 02:25 PM
I meant the people who were being mean to you. I have calmed down some.
lhagsjr
12-05-2007, 02:31 PM
posting every 5 minutes that u have ALS wont make things better....
crystalkk
12-05-2007, 04:53 PM
jenny,
nobody is being mean to lou, we want him to get answers, not keep going back to the same thing.
2 of his emg's showed some myopathy, there are other drs outside of nueros that might be able to help him.
crystalkk
12-05-2007, 04:55 PM
jenny,
read all his posts and you will see why we keep questioning him about this.
I think I posted under the wrong thread but I was wondering what a rhumatoligist and an endocrinologist do? How can they help if you are not diagnosed with ALS? Sorry to post so many questions? For those of you that have family that have had ALS and now you suspect that you do- have you followed the same patterns or are they different? Have you been around the same age of DX? Are there genetic markers for ALS? I remember reading something about some protien that they can test for? Does this test have possibilites for being a test for ALS for the general population?
Pldo - I answered your questions under the other thread you posted on. I think this thread should be dead.....no offense Lou, nothing to do with you!
Sanders915
12-05-2007, 09:38 PM
Wow, I have diagnosed with a motor neuron disease, and have been reading this forum for a while and have decided to join. I was a little miffed about the harsh language and uncaring words used to describe another member, NUTCASE, wow that does not seem like a caring forum, when members treat members like this.
I am dealing with a illness as are many of you on this forum, and I can understand how are feelings can get out of control, but we are all in this together. I appreciate all of the support it seems everyone is giving but do not scare me already...B
scared of als
12-05-2007, 10:21 PM
Leslie you are such a kind person, your the one scarying away new members.
ANXIETY, sure, I have a furrow tongue and a twitch in my tongue, but I guess I am lying about that, I go back to my specialist on th 17th. So i will keep you updated since you are so worried about me. Leslie I never said you did not have poly, but I dont why you are on als board. The rest of us are waiting for a als diagnosis, or are diagnosis.
Why do you care so much about making problems for people on this forum, thank you Dr. LTR
OK I thought I had made it clear. The next person to make snotty remarks to anyone here will be banned. I don't care who it is or how long you have been here. This is no place to start name calling. I think apologies are in order. If you disagree, there are other forums that might let you get away with it. Not here and this is the last warning.
AL.
Sorry Sanders915 that you had to come in in the middle of a peeing match. Most of us are really quite nice here and people get along and are helpful and supportive. A couple seem to be having a bad day. Stick around. It does get better.
AL.
Jenny - it's not for you to just join and tell who should be here or not. I think that would be up to the moderators???????? Apparently you know nothing about myopathy. The people on here followed my illness for a long time and I was asked to stay. I will repeat poly mimics als.....why can't you get that? I told Cindy you were going to cause problems for me because you talk to an ex member on the phone and, well, who was right?!
Lou, at least I recognize this thread was about you.....and back to you....I know you too were told you have myopathy (I'm sure you know who will ask why you are here now!!!) and I hope that you follow through with that dx with a myopathy specialist....usually they are the same specialists as als because, well, you know why, but there are some clinics that are specifically for this. Johns Hopkins isn't too far from you is it?
Sanders915 -
Welcome to the forum. I hope you will notice that the vast majority of visitors to this forum do not behave in the manner you describe above. It would be sad if new members are inhibited from participating for fear of being treated rudely. If you browse around old threads, maybe you can get a broader "feel" for the forum and all the good folks who visit.
Liz
Sanders915
12-06-2007, 09:49 AM
Thanks for the kind messages, I think I will just stay clear of members who seem a little scary. This seems like a great place to share opinions and questions. Thanks for that.
Clbrink
12-06-2007, 09:57 AM
This forum is a "community", you will find many different people here, as in any community or group.
I guess that sometimes the messages come accross a little harshly when typed and read vs being face to face, there is more room for misunderstandings. Most people are here to share, help and support each other. I am also a new member to this forum, although I have been viewing it for over 4 years.
Tina
Icanmanz
12-06-2007, 10:15 AM
Hi Sanders! It's nice to hear you are staying. Sorry, I meant to welcome you, but I had a hard time finding the right moment, and I am glad I finally got to do it. Tina is right. This forum is like a little community. We share our experiences, feelings, etc. It is a nice forum. No need for you to feel uncomfortable. I am not a Pals, I am a former Cal. If you have any questions, feel free to ask to ask. There are a lot of caring folks here that do not mind answering your questions. Again, welcome to the forum, and God bless!
Irma
Sanders915
12-06-2007, 04:24 PM
Lou what is your next appt? do you have an appointment with a new neuromuscular specialist? hope you can get to the bottom of things.
Jenny sorry to hear this is happening to you, I think everyone who has a fear needs an ear. Thanks Al, seems some people just like to be unkind.
myooshka
12-06-2007, 08:24 PM
Why can't everyone just get along? Why are people so concerned about others diagnosis-there is life outside this forum. Please keep this forum a place for people to come and recieve support and caring words. Personally as an adult I would find it embarassing to act in this manner. I think this bickering should be saved for private messaging if the need overtakes one to want to be confrontational. It cheapens a wonderful forum that is meant for support.
My seniments exactly Mya.
AL.
Jamiet
12-07-2007, 04:31 PM
Mya,
I started typing a repsonse to this yesterday and it was just about verbatum what you said.
I think we should all come to a gent's and ladies agreement, we offer support, kind words and kind advice. Worry about your own dx and no one else's. This should keep things simple.
We all have enough in life to deal with, why should we come here and make more grief. This is most people's "get away", to come and talk to others, whom really understand. I mean...i come here because you people understand what i am going thru, wether this is related to ALS or not.
It's a forum of people affected by ALS, so, anyway it affects you is cause for a good welcome here.
Let's all get the Christmas spirit here.....drink a cup of eggnog....even a little rum in it would do a good trick...or if your AL...a good glass of red wine to keep the ole pumper (heart) happy.
And Mya...your baby is very very cute!!!! I love kids.....they make your day....give you something to look forward to. Give you a good reason to pop out of bed....a good reason to hurry home from work and a good reason to think it is NOT ALS what i have or if i do have it, ALS will have to live with me b/c i won't live with IT.
Let's make this a good holiday for everyone. Let's all agree, if you don't have something good or supportive to say, just don't say it, or PM the person, otherwise........AL seems to be on a banning spree, please don't become the next fire for him, he's really good at putting them out..:mrgreen:
Good Weekend and a very Merry Christmas to all!!!
Rgds,
Jamie
crystalkk
12-07-2007, 05:18 PM
Jamie,
I'll toast to that!
CindyM
12-07-2007, 08:08 PM
Amen to all of what you all just said! I think somebody else said this before but remember that what we post here stays up a long time! It could be words of wisdom, or juvenile, but months from now it will still be around for the world to see. The internet has a lot of power but with that power comes responsibiity.
Personally, I would hate to think that someone who knows me might come here and see me being disrespectful. Especially knowing that PALS and CALS frequent this board, with all the troubles they already have. I am not saying you have to live by this rule-just being hosest that I could not face myself if I did not. Cindy
Just for everyone's information, no one has been banned. Someone was given a two week time out last night but that's only the second time I've had to do that.
AL.
