still the same

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Well, sometimes emotions run high around here but it is now wonder, considering how much we all have on our plates. But as far as controversies go, this one is rather tame, as far as I can see. Lorie always says we are are a family, and in any family there are discussions...And the PM system seems to work fine for folks that have private matters to work out between each other. All in all, I think we are OK. At lest I hope we are.
 
Lorie- my post crossed yours, or I would have responded differently. I did not realize we were getting on your nerves so much. I am sorry you are offended. We still wish the best for Tim, and you and your husband and daughter. I hope things look better to you in the morning. If not, please PM me! Cindy
 
I had localized twitching and cramping in my left hand which started in 1999 - 2000 and continued. In 2005 it progressed to the point where I was losing dexterity. In 2007 it began to show signs of atrophy and I was diagnosed. I've got a letter from the ALS clinic stating that the cramping and twitching I experienced in 1999 - 2000 were more likely than not the initial signs of ALS. Proof, no, coincidence, if it is it's a strong one.

I do understand your point although I believe that there are things which can be argued. Until the etiology of ALS is known there is no way for us to prove or disprove any of this which means you saying twitching 7 years ago isn't related has no more power than me saying it does. I can however lend some substantiation to my point given the above time line. Personally, I don't normally respond to the Do I Have ALS? threads unless it is questions like what's an EMG or some such simply because it is to subjective and I'm not a neurologist. Having said that neither are you but you don't believe three others who say you don't have ALS. So you have no proof that you have ALS and yet there is still a part of you that believes it while two of us that do have ALS have related personal experiences with at least coincidental evidence and backing from experts and you oppose. What's that word....hypocrisy?

All right last bit, wright I understand and at least in part agree with your point however your timing was awful and your phrasing could be construed as personal. I respect Lorie on many levels and as such will come to her defense which in this case she obviously felt like she was being attacked. I don't believe that was your intention but as I said your timing was awful. I will be more than happy to discuss/debate this further, just send me a PM.
 
I have to let you (Jeff) and Lorie know that I respect both of you. Again, my intentions were not to hurt or offend anyone. I was simply trying to lend a hand to those on here that are scared of having this disease. I truly did not intend for any of this to happen on this thread. Lorie, I sent you a PM some time ago and Jeff I will send you one as well.

P.S. I wouldn't call my continuing concerns about my health, hypocrisy . . . but rather . . . a slight fear of the unkown, because none of the three neuros have been able to tell me exactly what I have. All they have said, is that are fairly certain it isn't ALS, but as you know, they can't tell me with 100% certainty . . . 99% certain is what they have all said, which is how certain I am. It's the 1% that continues to play with my head. I've put myself through a lot these last few months and still haven't completely calmed myself from that trauma.

The best to all.
 
My best to all as well. I'm sitting here at the computer listening to my husband try to gag and choke down his breakfast. I believe that boxer22 or any of us when we first signed into this forum make a choice to do so. We are all adults. We make that choice. What we read is our choice. What we take from it is our choice.
We are all scared to death-Patients and caregivers of the UNKNOWN. Boxer22 I wish you well as I do all, but you will read the good, bad and the ugly of ALS on here. But, take that information along with your doctor's care and YOU (as all of us) do what's best and what you can with the UNKNOWN.

With tears, I hate this for ALL of us whether its ALS or NOT. I read everyday on here and everyday I read a story of someone's situation and it's like I'm reading about myself and my husbands life. It's all surrell.

Love to all,
DonnaJ-WV
 
Jeff I wanted to ask about your twitching. When this all started for you did you have
an EMG done? What did the Dr.'s diagnose you with, or did they not give you one.
You say you had localized twitching, so as I understand it the twitching took place
in your hand, not your whole body. Please I do not mean to disrespect anyone. It is
just that I read so many different things it gets confusing. I did read that localized twitching is more of an indicator for ALS than body wide twitching such as Boxer
experienced. Did the twitching ever go away or was it constant for you. It is a
terrible disease I can well understand Wright's anxiety as for not believing his neuro.
I started down this road because my Dr's PA told me I had an MND and I asked her
what are you talking about and she told me ALS. I then went to a neuro who specializes in MD, who told me no ALS...all anxiety. On good days I believe her
but on days when I twitch and my voice cracks I don't. Cornelia
 
Cornelia, well before I go any further I would recommend that you go back to that PA and calmly reel back and break their nose. There isn't a PA out there that has the training, the equipment, the knowledge or the right to make a statement like that. OK don't break their nose unless you're ready for the legal ramifications but I'd definitely give them and the doc a piece of my mind in front of one another right before I asked for my records and never came back. Enough of that and on to your questions. I had twitching and cramping in my left hand in the '99 -'00 time frame. I worked in electronics at the time and I remember my hands cramping up when I was trying to work with small tools. I figured it was because I was trying to work with small tools. Because of that I never went to a doc. The twitching was on and off and the cramping usually only happened when I exerted or overexerted. In 2005 I started having problems with fine motor skills in that hand. I had problems threading a nut onto a bolt but I thought my back was out. I had a buddy crack my back and an hour or so later it would work although not as well as the right hand. That continued until Feb 2007 when I had problems holding a plate with my left hand at a buffet. OK, interfere with my work no problem but interfere with my eating!?!?! I had to get to a doc. I did my own research online and had an idea. I went to my GP who did the normal neuro tests and pointed out the atrophy in the thenar muscle in my left hand which I hadn't seen and asked me if I had any idea what it could be. Well let's see, I had weakness, atrophy, fasciculations and clonus so I told him it could be ALS to which he agreed. Next was local neuro and EMG/NCV which showed damage in 3 regions. Next ALS clinic with a repeat of damage in 3 regions and nothing in blood or CSF. Next I officially joined the distinguished community of those about the kick the $h!t out of ALS :)
 
Last post leads to a question

It seems to be a common theme on here and from what I've learned elsewhere, that almost all people who have ALS were truly unaware anything was going wrong until a foot drop, not being able to stand on their tip toes, not being able to turn a key, etc.

It also seems that the atrophy is very, very slow (initially at least). So is that the reason no one realizes what is going on . . . coupled with the fact that there are no real sensory symptoms? Jeff seems to be someone who would be "aware of things" and for someone like him to all of a sudden notice that he can't turn a screw and not notice the muscle on his hand disappear, seems almost unfathomable to me.

Maybe I'm so aware of my weakness and atrophy because I have so many sensory symptoms and "weird" sensations in my legs. I guess because it happened so fast to me (atrophy of muscles in less than 2 months . . . not severe atrophy, but there is definitely loss of many muscles in my arms and back) would also allow me to realize it more.

Al also said that his leg weakness was just his legs getting tired and there was no "weird" sensations to go along with it.

Am I correct in what I'm thinking?
 
Jeff, thank you for your reply. I hope you do kick the **** out of ALS. Yes the more I
think about that PA the madder I get, but it is too late, the seed was planted. I also
think given all my symptoms it is more than just anxiety, although I am pretty anxious at this point. What I am trying to do is change my thinking. That no matter what it is, to make the best out of everyday. To not let fear overwhelm and paralyze
me. There are many people on this board that seem to have accomplished just that.
an amazing feat given the circumstances, especially as they are much worse than mine.
In April it will be a year that all of this has started, and I was hoping that perhaps after
a year and no weakness and athrophy I could feel somewhat reassured. Cornelia
 
Frank, you've made quite a few assumptions in there that may or may not be true. Firstly stop trying to compare symptoms is serves no purpose. There are so many different combinations of progression rates, initial symptoms and disease paths comparison is useless. Secondly, sensory symptoms are NOT indicative of ALS. Like I said before if you don't meet the criteria here you don't have ALS. Does that mean you'll never get it...no but considering that ALS affects 0.01% of the U.S. population it's a safe bet. Actually almost 10 times as many people die from auto accidents every year but I'm willing to bet you haven't sold your car yet. Cornelia that last part goes for you as well.

Life is what it is, you can spend it worrying or living. Personally, I chose to live it and I'll see what tomorrow brings tomorrow.
 
Hi,

I want to respond to is the fear - for Cornelius and others - "What I am trying to do is change my thinking. That no matter what it is, to make the best out of everyday. To not let fear overwhelm and paralyze me."

I agree with Jeff, and my ALS story is much the same, except that I am still being tested for MMN, as the second opinion to ALS DX. My right hand cramping started early in 2002, and my finger began to bend. It stopped moving in 2006, I fell many times. Oct 31, 2006 ALS DX. ALS clinic Dec, 2007 EMG 3 limbs positive for ALS, blood work no problems, but I have been on IVIG since Jan 2007. I may go off after another EMG/NVC due to a bit more progression anyway. Twitching in right hand started a few years ago - don't remember when. My progression is super slow.

That being said, the reason I am writing is about fear: MY youngest sister died at 22 - car accident (graduated as a teacher, posthumously 3 months later.) I lost 6 years in mourning, stopped my masters, delayed having kids etc. etc. What was the point?

I healed - moved on when I became grateful for her. All of my mom's siblings died of cancer before age 60. My cousin died of cancer. My mom had Parkinson and cancers (2) died after 5 years of dementia and cancer. My oldest sister died after living with /fighting cancer for 12 years(breast to bone cancer). My other two sisters are breast cancer survivors (11 years and almost 2 years.) I don't have it. - my annual tests are this week.

Two weeks ago my husband was DX with prostate cancer. He will have surgery on April 2. My sister has surgery April 1. Please put us in your prayers also. Again I see, and in my most sincere and humble way, I pray for gratitude. So much of life is not in our control, but gratitude may be. For us we have two wonderful daughters and a new wonderful son in law. Our daughters are college grads, and both are back to get their teaching degrees. I had 36 years of teaching, and finished an Ed. Specialist and1/2 toward the Ph.D, before I had to stop. My husband got to be the home parent.

So I wish for you as you go through finding what's wrong that you can note everyday what is right and open yourself to peace. I wish you all a very blessed Holy Week. Sincerely, Peg
 
Wow, I really did not intend to make this such a controversial thread. I was still a little concerned about The Als issue and wanted to get some advice, so thank you all who responded. I am not a doctor nor am I someone who knows all of the facts about ALS but I think that we can all agree that so many diffrent websites,doctors,books, and etc say so many diffrent things! One say twiching comes first another says the oppesite. So its really hard to understand any of it. Some of you asked about weekness, yes I feel that I have some in my arms. Can't hold them up as long as i use to. I even get tired when turning the radio in my car. But agian, could this just be me not working as hard as i once did. Maybe i am not using my arms as much as i should be. I don't really know. I really hope that after a year of twiching/cramps staying the same that it is just BFS. Thank you agian for all of the replies.

Ashley
 
Peg you have gone through so much. I hope that all will go well for your husband. I
will tell you a story about my cousin, his name was Tobias, he was a quiet boy. A little
shy, but once you got to know him he would open up and he was a wonderful kid.
He wasn't handsome in a conventional way, but he had beautifull eyes. He didn't
smile often, but when he did his whole face transformed, he became so heatbreakingly handdsome. He was an exceptional soccer and tennis player. When he was about
14 years old he developed a pain in his arm and his arm went numb. His parents took
him to the Doctor, and they knew right away what it was. He had a very aggressive
neuroblastoma. He went through radiation and chemo but nothing could stop the
progression. Precicely because his young body was full of growth hormones, his cancer fed off them also He would try to be brave when is parents came to the hospital to see him, especially for his Mom, but when they left he would cry. I know this from a nurse who was a friend. He would tell his Mom, I am going to beat this. He died 2 years after
diagnosis. At the end he was blind and imobile, he convulsed and he was so sensitive
that he was tied spread eagled and naked to his bed, for he could not tolerate the weight of the bed sheets on him. He was sixteen years old. I don't know how his
parents endured this, words fail me.
I know we have no control over our lives, but how to find acceptance for the unacceptable. Cornelia
 
My Post

My post about Twitching/Fasic's was taken totally of of contex. If someone assumed that I was saying that Tim only had Twitching/Fasic's for seven years, that meant he had ALS. Was Wrong. Tim had Cramping and Weakness. So we get strait to the point. If Tim had not had a quack MD that fed him meds for years that kept him coming back for more. Instead of sending him to a Neuro. He would have been DX sooner. I am trying to sum this up as simple as I can without a long drawn out story.

Never did I say if you have twitching for seven years, you have ALS. Never would I. I would not have the right to do that, nor would anyone else.

Everyone has their own Symptoms and Journey that have ALS.

I am not posting to this Tread, again.

Lorie:-D
 
So I wish for you as you go through finding what's wrong that you can note everyday what is right and open yourself to peace.

Peg- amazing insight for someone who has so much to worry about lately. I wish you and your hubby well! Please let us know how he is doing.
 
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