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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?
 
You should absolutely get another opinion and you should make sure it's with a reputable neuromuscular specialist. Make them prove to you that you have ALS.

Your friends and family are giving you advice because they obviously care but their claims are completely unfounded. Taking gold to neutralize aluminum poisoning is the most absurd one of the bunch. First of all gold doesn't neutralize aluminum (I'm not even sure what that means) and there is absolutely no evidence that aluminum causes ALS. There was once (in the 80's and 90's) a theory that aluminum causes Alzheimer's but that was disproven.

P.S. If you have the results of your EMG, I would like to see them. Can you transpose them on here?
 
It seems that everyone wants to get on the bandwagon when a diagnosed is made, including the neurologists, I think. In this economy, the doctors need business. They have bills to pay and not many patients can afford to come in. Then too, I think that everyone wants to make a quick buck.. they want to sell you something.... like herbs or meds or even hypnosis.. whatever.
We have to have hope... that is true. But just consider, if it is ALS there is nothing to reverse it... that alleviates the need to search out a cure. If there comes a real cure, we will hear of it. You cannot store up energy or preserve energy if you have ALS... extra exertion only depletes your srength. So, I know it's difficult, but try to live your life in spite of the symptoms, make the most of every day and carry on doing all the things you enjoy.... continue with your plans.
The problemmatic symptoms you deal with can't be ignored, but your activities modified to fit. Keep your hopes up and your attitude where it will not depress you or your loved ones.
It's easy to give advice, I know. I don't have ALS, but I do have other physical problems (pain of arthritis and I can't take meds. I exercise 4 or 5 miles a day by doing aerobics. If I don't keep it up, I'll be a cripple) Life is short. Life is precious. Please hang in there and tell all these people you appreciate their concern but that you'll decide for yourself on what to do if anything. Bless you. I"ll be watching to see how you're doing. Thank you for your input.
 
Ridge,

Welcome to the forum! I'm with Wright! With one neurologist reading the EMG/NCV one direction and the other in another, I'd get a 3rd opinion. In the meantime, I'd believe what the local neuro is telling you.
 
Please see a lyme doctor. Bell's Palsy is a red flag for lyme. Lymenet.org is a great website and can give you a list of competent doctors.

Don't trust any lyme test, they are very unreliable and the CDC took out 2 bands that were crucial in diagnosing lyme.
 
Re: Conflicting ALS diagnosis

Not trying to sound stupid but if the test to test for Lyme are bull than how do they diagnose people with it?

Just curious

Robynn:)
 
I found with my difficulty with breathing at night when I laid flat was to elevate the head if my bed. Only then my feet would slide down and off my bed, so I got a raised piece of foam, which has been very helpful for the time being. It is very scary when one can't get their breathe. Do what works for the time until things get figured out for you. Best of luck- Karin
 
Robynn, dont you know that if its not anything else it is Lyme. Thats why I hate actually being diagnosed with it even though all my 6 tests now are positive. I'm still not convinced I have it lol :) You must prove to me beyond a shadow of doubt it is what it is. I finally got this test 2 months ago that I'd never heard of and it showed me the antibodies fighting off spirochetal bacteria and thats the closes to convincing that theyve got me :)
 
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