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PostPosted: March 6th, 2008, 12:55 pm
by TattooedMommy
Lately, I see the boards are fading away since I last came here back in January. I think that is a great sign being that people are getting good diagnosis...getting over the anxiety, getting hobbies, and moving on with life. However, For the people that are left. I sense soo much negativity and worry still. NOT WITH EVERYBODY just a few. I just want to know where all the positive is...Why do people tend to skip over the POSITIVE POST and go straight to the NEGATIVE WORRISOME ones.
Here are some of the BEST post I have cut n pasted lately that I think are more relevant than any posts on the BOARDS lately. I would start off with ANGIES...but apparently there is a LOT and she is doing such a AWESOME job in research and making it available to us. I appreciate that soooo much!! In the mean time here are some REALLLLL HIGH POINTS that we should ALL stay focused on:

By: Mextwitcher (he interviewed Top Neuro's *professors in UCLA* and posted it for us)
1. Are twitches seen before any clinical weakness or atrophy? ALS is a disease of progressive weakness, normally twitches should not be seen before any atrophy or weakness. Often twitches is accompanied with weakness, but it is caused by deinnervation/reinervation of motor neurons.
2. What does that mean? it is caused by the dying muscles sending signals to motor neurons that have not died and to reinnervate and replace the dying motor neurons. However, twitches are experienced by everyone and if you asked any ALS patient whether they experienced twitches before having any weakness or noticeable atrophy, every patient should be able to say with certainly that they did notice twitches. Meaning that everyone has twitches, yet the pathology behind it is different. If someone turns out to have twitches and suspect ALS, then the noticeable weakness will be evident or weakness should be accompanied with 2-3 months. Most of the time weakness and atrophy is the main complaint when patients come in to be examined. A professor gave an example of brain tumor: someone who happens to have an incidental brain tumor will mentioned with great certainty that he/she experienced headaches prior to the diagnosis, yet it was found in a study that a majority of patients with small brain tumors was not the cause of their headaches. In fact, headaches are not caused by tumors unless they are large enough to cause meningeal irritation by herniation, bleeding or space occupation.
3. Are most twitches benign? Yes and are not a major complaint for most people. Professor gave an example: A majority of people have headaches, but not everyone sees a doctor for concern of a possible brain tumor as the cause of headaches.
4. Should I be afraid of having ALS after 1 yr of twitches, since there are people with ALS who endorse having twitches prior to having clinical weakness and atrophy? twitches without any weakness or atrophy is completely benign. Usually, other omnious signs should be present within 2-3 months since this disease is progressive.
5. Again a professor commented: "everyone with ALS will endorse twitches 1-3yrs prior to weakness or atrophy because everyone has twitches period.
Well I hope this helps for anyone who have been searching other sites and found insecurity from other people. My advice is to not search other sites or google anything that has the letters ALS forward or backwards. Hope I helped.mextwitcher

By NikkiB (After a year of worry and her neuro visit) My visit to the neuro....
by nikkikb on Mon March 3rd, 2008 5:13 pm

...went very well! He asked what my symptoms were. Twitching a lot for a month or two last year which has since stopped and what I believed to be atrophy (wasting) in my hand. He did a few strength tests then basically laughed at me and said he can say with 100% certainty that I do not have a motor neurone disease. He also asked if I knew someone with it which I do and he laughed and said just because someone else got it do not assume you have it. He said that there was no wasting in my hand (and I have been convinced for months that there was a strange dent in my hand!) and that the fasculations were nothing to worry about even if I had still been having them. He said the eye twitch was definitely nothing to worry about. According to him MND/ALS is very, very rare in anyone under 60.

When I was trying to cut n paste more I recieved a system error. But basically all I was trying to do was post peoples NEUROS info on here that have seen one, two, three or more neuro's with one, two, or three plus emg's or ncv's. Some w/ none b/c as its been said MANY MANY MANY times a "CLINICAL IS ALL YOU NEED". I just miss all the Positive posts on this board from when I first came. It seems people are disappearing quickly the boards are slow, WHICH IS GREAT NEWS if people are moving on and enjoying life now. It has just got to where I dread to sign on here anymore- except to check in on Angies findings or maybe in lue of ONE MORE helpful post for others!! Which are far and few between. I look forward to Joanne's thread today after her neuro appt!!! God Bless everyone...Just in the dumps w/ all this negative. :|