Ridge
Member
- Joined
- Nov 27, 2010
- Messages
- 13
- Reason
- PALS
- Diagnosis
- 09/2010
- Country
- US
- State
- FL
- City
- Seagrove Beach
I started having slurred speech, muscle twitching and trouble swallowing symptoms in June. Originally about six months earlier I had a severe case of “Bells Palsy” which also caused some slurred speech so in June I just thought my slurred speech was a by-product of that. My local neurologist said I had a few symptoms common to Bulbar ALS but was a little confused because I had no muscle weakness or any other ALS symptoms, he said he just wasn’t sure and sent me to an ALS clinic. The doctor there did EMG and nerve conductivity tests, interviewed me for 5 minutes and said I have ALS. That was it. I felt like I was a patient on an assembly line and came away from the appointment with the strange feeling that he said that to every patient. Very impersonal, very matter of fact.
Then I retuned home and followed up with my local neurologist. He is baffled. He said that after he reviewed all of the EMG and nerve conductivity test results sent to him from the specialist, he saw NOTHING in the test results that showed ALS. His exact words to me were “If I performed these tests myself and read these results I see nothing that would cause me to diagnose ALS”. He said let’s just monitor your progress over the next few months to see if you start to have any reduction in muscle strength.
I know that most neurological diseases are hard to diagnose as there are few hard and fast red flag tests, but I just don’t see how two professionals can have such a different view of what I have (he tested me for Lyme but was negative). I guess I could go to another doctor for a third opinion but I’m not so sure what that would prove. What if I go to 9 doctors and 5 say positive and 4 say negative? What do I do then? None of my symptoms have changed really since June. I still have slurred speech, difficulty swallowing and sometimes when I lie on my back I have a slight problem with initiating an involuntary breathing sequence. It’s like I have to make myself breath for a second then it’s fine, and only happens at night when I lie down.
Also on another note, since my diagnosis EVERY friend, relative, and acquaintance in the last 20 years is sending me hundreds of alternative cures. Everything from supplements, herbs, vitamins, exotic plants, minerals, something called OPC anti occident liquid, to doctors in Mexico and Korea, Chinese medicine, etc. And of course the all encompassing faith healing. One friend did tons of research and is sure that ALS is caused by some sort of exposure to aluminum in my life time and is adamantly convinced that if I start taking small amounts of gold it will neutralize the affects from the aluminum exposure and he swears my symptoms are completely reversible. Most are VERY passionate about these cures, it’s almost like brainwashing and they get very upset (almost insulted) when I don’t go out and devote every waking minute of my life to their specific remedy. I’m not closed minded but I don’t even know where to begin or which one to try. They all say the same thing, “what have you got to lose”. Well they just don’t seem to understand that they have one cure in line with hundreds of other alternative cures that have been suggested to me, all by people who believe just as strongly that their “thing” is unique to my recovery. My life would be totally absorbed if I researched even half of these cures.
Has anyone had or heard of positive bona fide results from any alternative methods?
Then I retuned home and followed up with my local neurologist. He is baffled. He said that after he reviewed all of the EMG and nerve conductivity test results sent to him from the specialist, he saw NOTHING in the test results that showed ALS. His exact words to me were “If I performed these tests myself and read these results I see nothing that would cause me to diagnose ALS”. He said let’s just monitor your progress over the next few months to see if you start to have any reduction in muscle strength.
I know that most neurological diseases are hard to diagnose as there are few hard and fast red flag tests, but I just don’t see how two professionals can have such a different view of what I have (he tested me for Lyme but was negative). I guess I could go to another doctor for a third opinion but I’m not so sure what that would prove. What if I go to 9 doctors and 5 say positive and 4 say negative? What do I do then? None of my symptoms have changed really since June. I still have slurred speech, difficulty swallowing and sometimes when I lie on my back I have a slight problem with initiating an involuntary breathing sequence. It’s like I have to make myself breath for a second then it’s fine, and only happens at night when I lie down.
Also on another note, since my diagnosis EVERY friend, relative, and acquaintance in the last 20 years is sending me hundreds of alternative cures. Everything from supplements, herbs, vitamins, exotic plants, minerals, something called OPC anti occident liquid, to doctors in Mexico and Korea, Chinese medicine, etc. And of course the all encompassing faith healing. One friend did tons of research and is sure that ALS is caused by some sort of exposure to aluminum in my life time and is adamantly convinced that if I start taking small amounts of gold it will neutralize the affects from the aluminum exposure and he swears my symptoms are completely reversible. Most are VERY passionate about these cures, it’s almost like brainwashing and they get very upset (almost insulted) when I don’t go out and devote every waking minute of my life to their specific remedy. I’m not closed minded but I don’t even know where to begin or which one to try. They all say the same thing, “what have you got to lose”. Well they just don’t seem to understand that they have one cure in line with hundreds of other alternative cures that have been suggested to me, all by people who believe just as strongly that their “thing” is unique to my recovery. My life would be totally absorbed if I researched even half of these cures.
Has anyone had or heard of positive bona fide results from any alternative methods?