View Full Version : Newbie Diagnosis
andyk
03-29-2007, 12:19 PM
I'm new here, so bear with me if I'm repeating what everyone else says in their first post.
I have been diagnosed with ALS by a neurologist specializing in neuromuscular disease. She wants me to get some more tests done--an MRI of the lower back, a spinal tap (to identify if it could be MMN), and consult with a neurosurgeon about my neck (which does have some problems).
I have made an appointment with an MD who specializes in holistic approaches, and has MS herself.
My onset has been unusual. In 1999 I went to a neurologist about tingling and numbness in my right arm. He pointed out that my hand was starting to atrophy. Since then the hand and arm has gotten significantly weaker. In 2003 I consulted with an Ear Nose and Throat doctor about some difficulty swallowing and a fullness in my throat. This January, immediately after having hernia surgery, I noticed muscle twitching all over my body--arms, legs, chest, etc. I think I've lost some muscle mass and tone all over my body. I also have been on a low fat diet for the last year, and lost about 40 pounds. I'm 5'9" and 155 pounds now.
That brings me to the diagnosis of ALS. My neurologist is pretty certain that's what I have, but she says the main way to know for sure is to watch my progress over the next few months.
The main new symptom that is bothering me is some dizzyness and instability. It occurs when I turn over in bed, sit up in bed, lie down, and sometimes when I stand up or reach up to a high shelf in the kitchen.
I've started to drink a lot more water--I really wasn't drinking much at all, mostly coffee, before. So the dizzyness could be partially from dehydration.
By the way, I also have a mild case of Cerebral Palsy. And I've been hard of hearing my entire life and lost 10 db of hearing in one ear about 3 years ago.
I'm also just starting to consult with a Chinese Energetics practictioner.
So, any advice? Thanks, everyone.
Andy
quadbliss
03-29-2007, 04:52 PM
Hi Andy,
Welcome to the group. Be careful about losing weight. With ALS, if you diet to the point of losing muscle mass, you can never get that back.
Mike
Hi Andy. Welcome to the site. First of all I'd get the suggested tests to rule out the other issues. Remember with the holistic approach that even though she has MS it isn't anywhere near ALS and what appears to work there probably won't work for ALS. I'm not familiar with Chinese Energetics so can only advise that if they tell you they can cure you or halt the progression then you better run, if you still can. If it doesn't cost a lot of money then maybe it can't hurt. Good luck.
AL.
JenniLee
03-30-2007, 11:52 AM
I'm sorry friends, I can't take it anymore....this negativity everytime someone who has just been dx or suspects ALS...the "don't believe in this or that"..."there is no cure". What is that? How does that help anyone? I may get kicked out of here for saying this, but if any person with an ounce of heart, not to mention intelligence, wouldn't never say such things. Okay, we're not stupid, we know what it means when you hear the words ALS. But how does ANYONE know what works & doesn't work for THEM. Everyone is different! In fact some of the most ELITE studies and doctors have shown that Alternative Therapies, Positive Attitude, and Therapeutic Approaches IN CONJUCTION with moder medicine are HELPFUL! People keep focusing on the negative and you take away EVERYONE'S hope and faith.
I thought is forum was not only intended for information, but support. What kind of support is it when we tell someone to run because this or that is a scam.
And, what is wrong with doing absolutely EVERYTHING possible to help your body and your health? Some of the TOP researchers have found a common thread in our bodies..chronic inflammation, toxicity, ongoing stress, etc.
If if that is not the case, why not boost your immune system? Why not get a massage to relieve the muscles? Why not take a clay bath to eliminate toxins? Why not go on a deep internal cleansing program to rid your body of waste? What is wrong with seeing practitioners in the alternative fields along with your ALS specialist?
That is what FIGHTING is all about. It means knowing what is going on this very minute, and REFUSING to say "okay, I have ALS, let's order the wheel chair while it's on sale".
No!!! You have just given ALS all your power. Does that disease mean more to you than yourself, your family, your friends, the sunshine, the hope for tomorrow?
What's wrong with hope? What's wrong with expecting they will find something more helpful to treat this? What's wrong with going on with your life, planning your tomorrows? What is the WORST that will happen? You'll get dissappointed? Well, you were dissappointed the day you got the DX...grief stricken...you picked yourself up from that day...
Friends, all I'm saying, is BELIEVE!!! Believe that IT is possible. Believe in yourself. Do what you feel is right for YOUR body. Will it work? Don't know, but who does.
Please, I beg you all, just BELIEVE that our minds and our attitudes CAN BE no, WILL BE tougher than ALS.
Jen
Hi Andy -
Just out of curiosity, what is Chinese Energetics? Is it some form of exercise or something that you ingest?
It would probably be best if you could give a brief answer without putting up any links.
In my opinion, anyone who is considering alternative therapies should consult with a medical practitioner before making a decision. You may disagree with their opinion, but it is important for those who are treating you to know what else you are doing/taking.
Liz
I know, JenniLee, that most of your questions are rhetorical, but I will try to provide something of an answer for you.
You ask how the facts (you call it negativity) can help someone. I am a very firm believer that information is power--the only way good decisions can be made is when facts are known. The very unfortunate fact about ALS is that no one knows the cause, there is no effective treatment and there is no cure. (There are lots of other facts, as well, of course, but these are the basics.) Pretending that this isn't true will lead many sufferers to make bad decisions--i.e., they'll spend money they don't have on treatments that don't work, will risk their lives subjecting themselves to harmful procedures and they'll separate themselves from their families in the last few months of their lives in the search of a "cure" that isn't really there.
You ask what' wrong with "doing everything." If time and money are unlimited the answer is "nothing." Unfortunately for all of us, time is finite and very few people are wealthy enough that they can afford to throw their money at every so-called cure that comes along. People who spend their children's college fund on ineffective stem cell treatments will find themselves without means to pay for a real treatment should one ever be discovered--not to mention that the kids are out a free education. It's in all our interests to make sure that PALS are well informed about the medical and scientific facts so that they can make good choices about how to spend scarce money and time.
As for things like massages and clay baths, I don't see anyone telliing PALS they shouldn't get those. But pretending that they're going to do anything to slow disease progression is senseless--that's all some of us are trying to say. Also, you bring up that alternative medicine favorite--boosting the immune system--as if that's a laudable goal for PALS Well, if ALS is the autoimmune disease that some researchers believe it is, the way to treat it would be to suppress our immune systems--not boost them. Boosting our immune systems would lead to faster deterioration. (And that's a perfect example of what I mean when I say that facts about our disease--no matter how unpleasant it may be to learn them--empower us to make better decisions than we might otherwise.)
I think the bottom line here is that those of us who have beeen PALS for a while are (to the extent it is possible) at peace with our diagnoses. Many (most?) PALS never get the benefit of perspective that some of us longer-lived survivors have. It may seem cruel (heck, maybe it is cruel) to hit newcomers with the stark facts right off the bat but, IMO, the sooner a new PALS accepts the reality of his disease, the sooner s/he is able to adjust to the new reality of life. That doesn't mean we're unhappy or not hopeful. What is means is that we are fully informed, realistic and mentally stable, without the constant ups and downs that come with forever believing that a few more hours of internet research will reveal the one true cure. An added benefit is that we don't have to shy away from participating on a board like this for fear of being confronted with facts that will scare us. We know the facts, we've incorporated them into our lives and we are moving on.
JenniLee
03-30-2007, 01:28 PM
Meg,
You're right, you have been going through this longer than me. I will agree to disagree with some of what you said. We're just different. You see, I have a 5 year-old little girl who is all light and love, I have a 6-year old little girl whom I adopted from my husband's oldest daughter (1st marriage). They are the reason I simply REFUSE to allow the facts of ALS saturate my mind. If I did that, then I am giving into it; I want my girls to see that Mommy is a fighter, every minute of every day. I am a big believer in POSITIVE thinking. Some of the world's most renowned doctor's, physicists and researchers believe that "every form of healing has its place". I'm not saying that our "cures", but there are other physical ailments out there that don't have cures either. I KNOW ALS is devestating, but, I also know the power of the mind, the power of hop and the power of positive thoughts.....those along with good proper nutrition, supplementation, knowledge and fearlessness to keep trying our my regimen.
I guess I don't belong here. I respect your opinions and wish you all the very best. You are a strong woman!
Jen
Hi Jen.There is no cure!!! Period. Should I lie to people like they do on other sites? I do not say to give up hope. Never give in !!! I've got 100 times more posts than you so at a guess I've read 100 times more than what you have. I'm not discounting your ideas or theories but I have seen and read what does and doesn't work for the last 4 years. There are people here with more than 10 years experience with this disease and most have seen the scammers and unproven so called cures and remedies. We only try to help the newly diagnosed avoid the mistakes that we have made. There is an old pilot adage "" Learn from the mistakes of others!! You will not live long enough to make them all yourself.""
Do you really think we shouldn't tell people that something we have found is bad or of no use or is just a scam? I said above that some of these alternatve therapies work and if they tell you they can cure you they are lying. I stand by that. With the exception of a couple of people here everyone is filled with hope. Hope for a cure. Hope for a better treatment or hope for a better or pain free day.
I think you missed the point.
AL.
JenniLee
03-30-2007, 01:45 PM
I'm not an idiot; I did not miss the point. Anyone who walks into a Neuro office to get tested for something knows already what is at stake. When a dx is ALS, everyone knows what that means. My POINT, is why welcome everyone with the "there is NO CURE!!!" statement. They already know that. Now, it would be different if the response to a newcomer was....."Clinical trials are being done to find a cure and/or treatment" in the meantime, if you have any questions, you've come to a GREAT resource of information and experience".
From that newbies will ask questions as they arise, but why welcome them with what they have already been told by the doctors?
Just try to be a bit more positive about it....it can go a long way.
I have had very close people in my life go through horrible things, including health scares, even some terminal....through positive thinking, knowledge and will power, I have seen them overcome.
I won't sell myself short, and that is what you do evertime you state the obvious to the new people who are already scare, terrified, depressed, anxiety ridden. I'm sorry but my goal is to be honest, but in an uplifting hopeful way.
Sorry I thought for the most part we were being positive and supportive. Occasionally someone comes here with a diagnosis looking for miracles. We don't provide that service here. If they ask for facts they get them. Some whom I will not mention come here convinced that they have ALS and we have been holding their hands for months trying to convince them that they will be OK. I would call that being uplifting and hopeful. People have bad days and good days. Hopefully yours will get better. I do not think for one minute that you are an idiot. On the contrary you seem to be a very intelligent articulate person. I don't know where you got the idea that I thought that about you.
AL.
bogey
03-30-2007, 02:34 PM
jennilee-- relax take it easy,not many people like al he's truthful,patient,honest and very helpful with is knowledge.bogey
Bogey. What do you mean? Not many people like AL. I thought I was well liked. I'm hurt. AL.
Hi JenniLee,
This place is for you, so please don't say maybe you don't belong here. Sometimes its really hard to read how people feel. I know I have constantly taken things the wrong way that my old friends would send me through text messages! Anyway, everyone needs to do what is best for themselves and we can understand that. And I know that we all think you are a great person, so don't think of not belonging! Leslie
I'm not an idiot; I did not miss the point. Anyone who walks into a Neuro office to get tested for something knows already what is at stake. When a dx is ALS, everyone knows what that means. My POINT, is why welcome everyone with the "there is NO CURE!!!" statement. They already know that. Now, it would be different if the response to a newcomer was....."Clinical trials are being done to find a cure and/or treatment" in the meantime, if you have any questions, you've come to a GREAT resource of information and experience".
From that newbies will ask questions as they arise, but why welcome them with what they have already been told by the doctors?
...because it's the truth? Because adults should be treated like adults and not children? Because some people need to be told the truth time and time again for their own protection? (An example--if not for the knowledge gained through reading the harsh facts in this thread, a PALS might be jeopardizing his health by attempting to boost his immune system and--possibly--speeding up progression.)
Just try to be a bit more positive about it....it can go a long way.
If the goal here is to make everyone feel good and provide a respite from the harsh realities of life, that might be good advice. If the goal is to share our knowledge about ALS, it's not going to work. The facts of ALS are simply not consistent with making everyone feel positive about their diagnoses.
I have had very close people in my life go through horrible things, including health scares, even some terminal....through positive thinking, knowledge and will power, I have seen them overcome.
Everyone dies. Everyone. Positive thinking, knowledge and power (whatever that means) do not overcome a terminal diagnosis.
I won't sell myself short, and that is what you do evertime you state the obvious to the new people who are already scare, terrified, depressed, anxiety ridden. I'm sorry but my goal is to be honest, but in an uplifting hopeful way.
I don't understand the "I won't sell myself short" comment. ALS is what it is and there's really no way to put lipstick on that pig.
There's a process that goes on whenever someone is given a terminal diagnosis. Many people have never really contemplated their own deaths and it takes time for some to become comfortable with the idea, but it happens because it has to. Once a person crosses that threshhold, it becomes much easier to read and understand the facts about ALS (or any terminal diagnosis, I'm sure).
I don't think that acknowledging one has a terminal illness is surrendering or negative thinking. It is acceptance of a reality that has been thrust upon us whether we wished for it or not. This acceptance clears the way for people to resume positive living for as long as they can, something we should have been doing all along, but many of us took for granted. That said, I doubt there is anybody here that isn't hopeful for a cure in our lifetime. We just have to be prepared for the fact that it might not come.
Peace,
Liz
patricia1
03-30-2007, 04:31 PM
Jenni lee I could see you are in the early stage of ALS dx DENIAL AND ANGER We were all there and I have never given in I have tried alot of the scams and I told you all how it went to try and spare you all the expense and heartache, but by all means you can and should try everything . There is no cure for ALS and that is way a pray evrynight for a miracle because thats our only hope right night Until a movie star gets ALS it will be the orphan disease .Dont be unset with us we are here for you,we are on your side Pat
Pat,
It's funny that you mentioned a movie star, because tonight, when I was watching the news and how the stars have bright breast cancer (and other cancers) into the spotlight, I thought the same thing. How can we get someone modern, rich and well-known to bring als awareness to the country. I think the closest als has been is with Christopher Reeves. If there are others, I never heard from them. I only became educated about als after I became ill. I really wish some of you would start video blogs. Believe it or not, the younger generation would become educated this way. Great time to move to a new subject, right?!! Leslie
P.S. Al, I am really sure that Bogey meant to say not many people "are" like Al.........it doesn't make sense the other way!
Leslie,
it is funny I just wrote the movie star thing, before I read your posts, on another thread. We need publicity.
Pat thank you for your support, you are kind and so educated about this disease. I know we all just want a miracle, why or why cant we get a miracle. It has been sixty years since Lou G. has passed, and we have not gotton much further. We all need each other, with numbers we have a voice, we must stand together, seperated we will be totally overlooked.
Annmarie--
When were you diagnosed? I thought I remembered that you had a recent clean EMG and the doctor said you didn't have ALS but your profile says you are a PALS. Am I getting you confused with another poster?
Just click edit Annmarie. I don't think it is any big deal, I noticed a lot of undiagnosed members profiles say that. Probably just being in a hurry when signing up and it goes unnoticed. Have a good night!
You are correct Meg, I just looked at the profile, never noticed that was on my profile, how do I change it, I did not even see that part when I signed up. I am going for my second EMG next week. Sorry for the confusion..
User CP, Edit Profile
The only way that sentence could have appeared in your profile is for you (or someone with access to your account) to have typed it in.
<see below for addendum to this post>
If you look above, mine even says I am a senior member!! I guess mistakes can happen on chat forums!
If you look above, mine even says I am a senior member!! I guess mistakes can happen on chat forums!
You're a senior member by virtue of the number of posts you've made.
And, annmarie, I just checked the profile and it looks like they've added that business about "how ALS has affected you" since I registered here. Originally the only way that would have shown up in your profile is if you typed it in. I see now that anyone who registers here has to opt out of the "I have ALS" line in order for it not to show up in a profile. FWIW, I think this is a not a good way to set up the accounts (in case David or anyone who can fix it is reading).
andyk
03-30-2007, 10:10 PM
Hey everyone,
Wow! That was quite a response in the last day or so. I appreciate everyone taking the time to think about my situation and respond.
It's a tough situation--do I agree with the doc that I probably have ALS and start making immediate plans for the gradual or not so gradual slide downhill? Or do I decide that it isn't a definite diagnosis, and seek out additional opinions and options, and start doing what I can about my present sypmtoms?
I have heard of people being misdiagnosed. There's a doctor in Colorado Springs that was misdiagnosed with ALS and it turned out he had Lyme disease. He is now running a Lyme clinic. When I mentioned this to my neurologist in Denver, she said "He was a patient of ours", and gave me a look that said: don't believe everything you hear.
Then there's Eric Edney. Apparently he's been living with ALS for over 15 years with a decent quality of life. Does that mean that he really doesn't have ALS? Or that maybe his recommendations for detox and diet might actually help someone else.
Whatever happens, I sure have a greater appreciation for life's everyday occurences.
Psychologically, it feels like Step #? of a 12 step program--the one where you apologize to those you've wronged. I don't necessarily believe in the afterlife, but it can't hurt to right a few wrongs and for me to try to let my kinder, gentler self out more often.
It will probably take a while for me to get a 'final' diagnosis, and in the meantime, I'm going to take an active approach with my health and not just wait passively to go downhill. On the personal side, I've noticed that I really want to spend more quality time with those who have been important to me throughout my life, and also have a bit more fun along the way.
I also started thinking about the poetry and music I'd like to have at my funeral. Maybe I'll have a memorial service while I'm still alive. That would be pretty cool.
I'm working on my ALS jokes, too. Here's my first one: Well, the good news is--I won't have to worry about getting Alzheimers or adult onset Diabetes...
A mix of information, plus your support along with a dose of reality at this point is what I probably want.
Sorry, Andy. I'm afraid I forgot about your original question in my responses. I'll keep it short:
Anyone who is suspected of having ALS should be evaluated at an ALSA-approved ALS center. I would not trust an ALS diagnosis from anyone other than an ALS expert--general neurologists do not see enough ALS to reliably diagnose it. Let us know if you need help finding an expert.
Your symptoms are not particularly suggestive of ALS but anything is possible with this disease. I do find it curious that you don't mention cramping, hyperreflexia/clonus or spasticity--all symptoms typically seen in PALS.
Dr. Martz (in CO) was never diagnosed with ALS and does not himself claim to have been (at least I've never been able to find a quote where he says that--the lymies have made that claim but he just says that ALS was suggested as a possible explanation for his symptoms which came on very quickly and were not otherwise typical of ALS).
20% of ALS patients live longer than 5 years and 10% live longer than 10 years. To put that in perspective, that's pretty much the odds that Elizabeth Edwards has with her cancer and I don't think she's picking out the music for her funeral yet.
And, as for your jokes--well, don't quit your day job quite yet.
andyk
03-30-2007, 11:11 PM
Hi Meg,
Thanks for the straight-forward response.
I'm pretty sure I was seen by an expert--I was referred to the University of Colorado Medical Center (Drs. Ringel, Quan, Neville) by three separate sources.
I've got some degree of spasticity--but I attribute that to my mild CP, which might be making the diagnosis a bit more difficult.
Interesting comment about Dr. Martz. I'll have to check with his office before I go there.
Good to know the numbers. Better than I thought. I would have guessed 90-95% only live up to 3 years.
Now, I'm really insulted that you don't like my joke. I'll just have to try harder, or die trying. :)
Andy
I'm pretty sure I was seen by an expert--I was referred to the University of Colorado Medical Center (Drs. Ringel, Quan, Neville) by three separate sources.
I don't see it in either of these lists:
http://www.alsa.org/community/article.cfm?id=639
http://www.alsa.org/community/article.cfm?id=638
You might want to poke around a little at the ALSA site where you can find, among many other things, info about survival rates:
http://www.alsa.org/
I had not focused on your CP diagnosis in my previous post, but I suspect that is making this diagnosis more difficult. That makes it even more important for you to be seen by someone very familiar with ALS.
Hi Meg. I don't like some of the options with the software either but from what I understand we got it very reasonably and seeing as we get no funding for the site it will stay the same for now. We don't want to allow advertising to get funding and I can't see people paying to be members. David covers all the costs for the site out of his own pocket. I have no idea what it costs him per year. I just appreciate the fact he does it and allows me to help run things.
AL.
Hi Al:
I just want to let you know my perception of the message posted by Bogey: that goes this way bogey:
jennilee-- relax take it easy,not many people like al he's truthful,patient,honest and very helpful with is knowledge.bogey
I THINK YOU MISUNDERSTOOD HIM, HE'S REALLY SAYING THAT THERE AREN'T MANY PEOPLE LIKE YOU, THAT YOU ARE TRUTHFUL, PATIENT, HONEST AND VERY HELPFUL WITH YOUR KNOWLEDGE.
I think that as soon as he sees your inquiry he will explain this.
P.D. I PERSONALLY AM VERY THANKFUL TO YOU FOR ALL YOUR HELP AND FRIENDSHIP
Sincerely,
Paty:)
Husband's Caregiver DX 10.17.05
Baja California, México
Al...I think you misunderstood bogey. I think he was saying "not too many people are like Al". Anne
Sorry folks. I got a Private Message from Bogey and I explained to him that I was pretty sure I knew what he meant and I was pulling his leg. One more example of my warped sense of humor. Glad that someone else is paying attention though.
AL.
HA HA HA HA ALYOU MADE ME LAUGH MY STOMACK HURTS :cry:
PATY
HUSBAND'S CAREGIVER DX 10/17/05
BAJA CALIFORNIA, MEXICO
You know what Al, I already knew it. You wouldn't have even said anything had you thought bogey was serious!! You're a little hellion, aren't you!!
