Feeling deaf, dumb, and blind

[flora]

I came to this site to try to find answers to questions I never thought in a life time I would have. I had never even heard of this disease until the docs said it to me, and even after just thought it was something like ms cause of the way they told me. After reading through the threads though, it seems that a lot of people have had experiences with it or believe they are having symptoms of it. My question (please forgive my ignorance) is this: Is this disease really that common that people generally think of it as something they may get? I teach anatomy physiology to deaf college students for medical billing and coding and I had never come across it. I am truly floored and feeling so stupid that a disease like this can exist in our world and I have never heard of it. I mean really, I have more knowledge of bovine spongeform encephylitis! I didn't even know that twitching could be a sign of something this horrific.

 

[TomS]

Hi Flora,
This pathetic disease is new to me as well. Trust me when I say, I wish I were not responding to your quiry.
However I am. Now it would seem that it is approximately one person in ten thousand will be Dx with ALS.
On the twitching, i will only say that one person in about one hundred that has continuos localized twithing will be Dx with ALS.
While I have not been Dx with ALS, I have had the distinction of being told by three Neurologist in three weeks that it looks like I'm in the early stages of ALS.
Next stop, the local ALS Clinic.
Tom

 

[Al]

The population of Canada is roughly 33 million. There are about 2200 people living with ALS. It's not a rare disease but fairly uncommon. My GP had never had an ALS patient until me and now he has 3. Go figure.
AL.

 

[ltr]

Hi Flora - I just have to ask.....after working in the hospital for 15 years I don't understand what you mean by teaching anatomy and physiology for billing. Is it so they know how to bill and code certain parts of the body? Just wondering out of curiosity. Oh, and its bovine spongiform encephalitis....can't believe I know that one too! If it helps any, I think a lot of us were ignorant to ALS before we began having symptoms, so don't feel bad!

 

[flora]

I knew I spelled it wrong:?:. Yes, the A&P classes in billing is for coding purposes. We also go through some pathologies and multiple diagnosed to learn how to properly code and bill for primary and secondary illness. Insurance companies can be real #$%^ about it, and use any excuse not to pay. Sometimes you have to spend hours on the phone between companies and dr.'s offices. It's a real pain, which is why I only teach and interpret.

 

[mamaoftwo]

Here is the thing - everyone is always going on about how rare ALS is but in reality, I read that it is just as common as MS but when the statistics are given (ie how many people are affected at any one time), it looks rare. Reason - MS doesn't kill you so at any given time on the planet there will inevitably be many many more cases of MS than ALS. Make sense.

 

[flora]

It does make sense. I know there is no cure, but are the researchers coming any closer? I mean there seems to be a lot more medications and treatments available for ms. Why is this?

 

[Steve100]

Hi Flora - I think there is going to be a meeting of researchers at the end of November, beginning of December. Hopefully, something will come out then. Try this link when the time comes, they will be posting any developments on the site below. Take Care, Steve.


http://www.mndassociation.org/resea...ternational_symposium_on_alsmnd/my_symposium/

 

[mamaoftwo]

Flora, the answer to that question is sadly very simple - MONEY! The pharma companies and researchers focus their energy where the money is, not where the most desperate need is. Given that as things stand, ALS is a sure-fire death sentence, there is no incentive to develop a drug for what is effectively a very small pool of people. If ALS were disabling and affected 1 in 100 then we'd have made an enormous amount of progress by now for sure in determing causes and treatments.
I was thinking about this today and wondered this - is there any other disease on the planet for which we currently have absolutely no effective treatments, that remains totally incurable?
100 yrs ago, people were terrified of cancer. Now millions survive cancer. Is the day looming ahead when an ALS diagnosis will be upsetting but not devastating because it can be "managed" or better still cured! I cannot imagine but years ago, people probably never believed you could contract cancer and live to tell the tale. Who knows. I continue to live in hope that someone, somewhere will make ALS their calling and find help for those who so badly need it.

 

[ZenArcher]

I don't believe money is the only reason there isn't a drug out there yet. Meningits affects less than 5000 people a year but there are vaccines for that. Another side of the coin is, if they come out with the ALS wonder drug tomorrow that either stops or reverses ALS symptoms would you be willing to pay more than the almost $1000 a month that is paid for Rilutek now? I know I would.

I honestly believe the largest reason a cause/cure hasn't been found is that ALS isn't just ALS. What I mean by that is I believe what those of us diagnosed with ALS have is more aptly called Motor Neuron Disease and that MND is not a single entity but a collection. Now some of those may actually be ALS, others are something else and so on. I believe that when it's all said and done there will be several variations of MND or ALS. Some may stem from environmental factors, others from hereditary factors, others from viral sources, etc.

 

[flora]

**sigh** It all makes me want to put my fingers in my ears and lalalalalal my way out of it. kinda like my son does when I lecture him about not taking the trash or feeding his cats.

 

[shopathonic]

Flora--
I'm so sorry to hear about your diagnosis. You mentioned twitching as a symptom in your first post--I've been going through that for a few weeks now, hoping that the twitching is benign. If you don't mind discussing the progression of your symptoms: Was twitching your first symptom? If so, where did you have the twitching? Did you have other symptoms at the same time as the twitching, or did other symptoms develop after the twitching, and, if so, how long after? Thanks for any details you might provide about this. If you're not comfortable discussing it, that's completely understandable.

Jeff

 

[flora]

Twitching wasn't the first thing I noticed. The first thing was very bad cramps in my foot and calf on one side when I was sleeping or even when I would stretch out in bed. Running became hard to do. I just chalked it up as low potassium. So I ate my bananas and tried other fresh fruit when that didn't fix it. Eventually I just gave up jogging. The twitching started about a year later in my leg, foot, and face. At the same time I was starting to trip alot and lose my balance. I wasn't as flexible as I used to be. I am 35, but I was in gymnastics, dance, and swim team my whole life so becoming so suddenly stiff was worrying. I noticed that when I would climb stairs my right thigh would get cramps so bad that I had to sit down and try not to scream. Later this started to happen in my left leg. and now in my left arm and hand. I have clonis in 3 limbs now and the plucking is non stop. I have been so active my whole life that sometimes it's shocking that I can't even do something as simple as laundry without pain and exhaustion. I thought I know what bad cramps were from swim. This is wayyyyyy worse, the cramps don't go away and I don't even have to be doing anything for them to show up. I hope that this helped. I won't believe that I have als until an als specialist tells me so. I have had alot of good advise from the people on this site who have been through all of this and I suspect that the docs who said they think I have didn't have all the info. I will let you know what the spec doc says.

 

[myooshka]

Jeff I agree with your theory. If dr's do not even know the cause of a disease, how can they cure it or realy treat it for that matter. My symtoms came on like a freight train I've never been the same since. It seems some people with als will fall all of the sudden or their fingers become useless this is their first symptoms while others have wasting but have use of their fingers. It comes on so differently in different people. Whatever I have my doctor thinks maybe was caused by a virus because my hands swelled up like balloons then all of the stiffness cramping twitches came on after that. Even with ms most people never die of it, but I know of three people that have. One person only lived with it for five years before she passed. It makes you wonder how one person with ms can carry on an almost normal life and one person dies of it after four years. I do not know a lot of facts about als but if dr's don't even know the cause of it how do they really even know what it is? How can you really effectively treat an illness when you don't know the cause?