Some Advice to Questioners, from an Answerer

[trfogey]

A few pieces of advice to make your tenure with us more pleasant for all.

1. ALS and the other MNDs are very rare diseases. The incidence of ALS in the modern world is about 2 cases per 100,000 people. That means that there is a 99.998 percent chance that you don't have it, unless a doctor has told you that you need to worry about it.
   
2. Because ALS is such a rare disease, we are going to be very skeptical about anyone claiming that they might have ALS based on some vague symptoms and their own I n t e r n e t research. This is because ...
   
3. ALS has a very specific set of pathologies, which leads to very specific symptoms and a very typical progression once the symptoms begin. The descriptions of ALS "symptoms" that one finds described on most medical I n t e r n e t sites are very vague and describe conditions in the body that occur later in ALS progression, not in the early stages of the disease. Doctors know this from their training and experience. We know this from our experience living with this disease. You need to learn this and stop being so gullible about medical information you read on the I n t e r n e t.
4. So, don't be surprised when we tell you that your symptoms don't sound like ALS to us. That doesn't mean that there's nothing wrong with you. It just means that it doesn't sound like ALS to people who know more than you do about ALS.
   
5. If you post here and you haven't been to a doctor about your symptoms, that's the advice you are going to get. Don't whine about people being mean or non-supportive to you -- just go to the doctor and come back when you have some results to report. If what's going on with you isn't important enough to you for you to seek real answers, then it's not important enough for me to spend any time answering your questions.
   
6. If your doctor tells you that you don't have anything to worry about, then stop worrying about ALS. See numbers 1 and 3 above. Your I n t e r n e t research is meaningless if the symptoms aren't there. Your doctor will notice the symptoms of ALS if they are present. This goes double if the doctor is a neurologist and you have undergone an EMG that did not show the signs of ALS.
   
7. Don't try to impress us with how much you think you've learned about ALS in the little bit of time you've been interested in it. Just tell us your story -- how it started, what doctors you've seen and what they said, etc.
   
8. It is not my job or that of anyone else here to convince you that you don't have ALS. If you don't want to believe that you have ALS, just stop thinking about it and stop reading about it. See number 1 above. If you can't stop worrying that you have ALS, then take that to a psychiatrist or a spiritual advisor.
   
9. If you want us to be sympathetic to you because we were once in your position (undiagnosed, uncertain, and fearful), then be respectful of our experience with the disease and listen to what we tell you when you ask our opinions about your condition. Support is a two-way street. If you don't want to hear an honest opinion, don't ask for any opinions. If we're worth believing when we agree with you, we are worth believing when we don't agree with you.

 

[laurel]

This warrants a sticky! Allen you are such a strong committed human being, and give so much of yourself. If I were King, I would appoint you as the only person allowed to respond to the questions asked in this section. Sort of a Dear Allen section.
Laurel

 

[Al]

Think I'll lock it too.

AL.