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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 10-13-2011, 05:47 PM   #1
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Recently Diagnosed with A.L.S but praying...

About a week ago, my neurologist stated that he was 99% sure that I have A.L.S. but I praying it's a misdiagnosis. My symptoms of about 6-8 weeks have included:
1. Hoarseness
2. Decrease in voice projection
3. Nasal sound to voice
4. Tickle in throat
5. Trouble swallowing
6. Fasciculations all over my body
7. Muscle cramps all over my body
8. Loss of weight
9. Nasal drainage
10. Excessive saliva
11. Droopy left eyelid
12. One smile line comes and goes
13. Tongue does not articulate well
14. Toes and fingers cramp and separate

Is there any other possibility other than A.L.S.

Thank you!

 
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Old 10-15-2011, 08:42 AM   #2
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Cool Re: Recently Diagnosed with A.L.S but praying...

To; iwillgetwell

Thank you for the response. I will attempt to get the neurologists to test me. Thanks, thanks, thanks

 
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Old 10-15-2011, 04:06 PM   #3
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Re: Recently Diagnosed with A.L.S but praying...

My prayers are with you. I know how scary it is...faith! An EMG will help the diagnosis. Have you had one? Also, did he mention your reflexes were over active. Your symptoms do sound as if ALS is a possibility. Please get a second opinion and do test for other things like lyme. ALS does present with very specific signs and symptoms. Good Luck and again I'm praying for you!

 
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Old 10-15-2011, 08:38 PM   #4
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Re: Recently Diagnosed with A.L.S but praying...

Thank you for the info. I have been to at least 5 MD's, with 3 being neuros; however, I have quickly discovered their is not a lot of experience with this disease. I will locate a LYME specialist and see if I can get checked Thanks again, sincerely!!!

 
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Old 10-15-2011, 08:41 PM   #5
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Re: Recently Diagnosed with A.L.S but praying...

I have had an anbundance of blood tests and a nerve conduction test. I have a muscle conductivity test this coming Tuesday. Do any of my symptoms appear to be anything other than ALS? Thank you!!

 
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Old 10-16-2011, 05:29 PM   #6
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Re: Recently Diagnosed with A.L.S but praying...

I'm not a doctor so I can't answer your questions about other things your symptoms could be from. I just know the symptoms you have described do happen with ALS. The muscle conductivity test will provide good information. I'm hoping for the best. Keep searching for answers!!!!! Have faith!

 
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Old 10-16-2011, 07:53 PM   #7
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Re: Recently Diagnosed with A.L.S but praying...

Thank you!

 
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Old 10-19-2011, 04:55 PM   #8
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Re: Recently Diagnosed with A.L.S but praying...

I've been thinking of you....Did you get any results from your test? No matter what happens, stay strong!!!!!

 
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Old 10-19-2011, 09:17 PM   #9
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Re: Recently Diagnosed with A.L.S but praying...

Received second diagnosis today. Think U have any hope? Thank you, Al Pruett

 
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Old 10-20-2011, 12:02 PM   #10
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Re: Recently Diagnosed with A.L.S but praying...

I'm really sorry to hear that you received this diagnosis. I do hope for you. I hope this situation plays out the best it can for you and your family. Times will be difficult but in caring for my mother (who had ALS) we became even closer than we already were. I shared memories with her that I will cherise forever. We had conversations together that I would have never had with her if she didn't have this disease. We shared many tears, of course, but we also shared many laughs trying to find our ways through the roughest moments. Please do all you can to be at peace. Surround yourself with loved ones. Allow help from all that are willing.

Prayers to you!

Last edited by moderator2; 10-20-2011 at 02:16 PM.

 
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Old 10-20-2011, 09:15 PM   #11
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Re: Recently Diagnosed with A.L.S but praying...

I'm sorry to hear about your diagnosis. This is my first post. I stumbled on this site when looking for lyme disease information. I've had symptoms of ALS, fasciculations, muscle wasting, dizziness, severe fatigue and many other strange symptoms. I've been diagnosed with a lot of different auto immunne diseases and my last doc hinted at ALS. The problem is, I've had symptoms too long for it to be ALS. Thankfully, five months ago I was diagnosed with Late stage lyme disease and am now being treated for it with intravenous antibiotics. Have you been tested for lyme? Have you ever had a bulls eye rash or other type of itchy rash with flu like symptoms or headache/stiff neck - preceeding your ALS symptoms. There is a documentary called "under our skin". Highly recommended if you haven't seen it. It helped me figure out that I have Lyme disease instead of ALS. The doctor in the documentary had progressive ALS and found out he reallly had lyme disease. Antibiotics saved his life! So many people with MS, ALS, Rheumatoid Arthritis, Lupus, Autism, CFS and fibromyalgia(I'm sure I missed some other illnesses where lyme was the underlying cause)! It has become an epidemic that mainstream doctors know little about. You have to find a Lyme literate doctor and get the right type of lyme test. You can google the documentary and there is a lot of information about late stage or chronic lyme disease online. Even if you have been tested before, there is a high chance of a false negative, if you've had it a long time. I'm not a doctor, just trying to get the message out. Please forgive me if you know all about this already and have seen a lyme literate doc before. If not, how can antibiotics/anti-virals hurt at this point. I was reading that almost all diseases start off with some type of bacterial infection or virus. Most all people with late stage lyme have multiple co-infections. I hope this is your answer! Don't ever give up hope! My prayers are with you.

 
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Old 10-21-2011, 09:17 AM   #12
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Re: Recently Diagnosed with A.L.S but praying...

Quote:
Originally Posted by Ate2manylymes View Post
I'm sorry to hear about your diagnosis. This is my first post. I stumbled on this site when looking for lyme disease information. I've had symptoms of ALS, fasciculations, muscle wasting, dizziness, severe fatigue and many other strange symptoms. I've been diagnosed with a lot of different auto immunne diseases and my last doc hinted at ALS. The problem is, I've had symptoms too long for it to be ALS. Thankfully, five months ago I was diagnosed with Late stage lyme disease and am now being treated for it with intravenous antibiotics. Have you been tested for lyme? Have you ever had a bulls eye rash or other type of itchy rash with flu like symptoms or headache/stiff neck - preceeding your ALS symptoms. There is a documentary called "under our skin". Highly recommended if you haven't seen it. It helped me figure out that I have Lyme disease instead of ALS. The doctor in the documentary had progressive ALS and found out he reallly had lyme disease. Antibiotics saved his life! So many people with MS, ALS, Rheumatoid Arthritis, Lupus, Autism, CFS and fibromyalgia(I'm sure I missed some other illnesses where lyme was the underlying cause)! It has become an epidemic that mainstream doctors know little about. You have to find a Lyme literate doctor and get the right type of lyme test. You can google the documentary and there is a lot of information about late stage or chronic lyme disease online. Even if you have been tested before, there is a high chance of a false negative, if you've had it a long time. I'm not a doctor, just trying to get the message out. Please forgive me if you know all about this already and have seen a lyme literate doc before. If not, how can antibiotics/anti-virals hurt at this point. I was reading that almost all diseases start off with some type of bacterial infection or virus. Most all people with late stage lyme have multiple co-infections. I hope this is your answer! Don't ever give up hope! My prayers are with you.

 
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Old 10-21-2011, 08:30 PM   #13
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Re: Recently Diagnosed with A.L.S but praying...

Thank you for your response. Two neuros did 2 sets of nerve conductivity tests ans two rounds of muscle conducitivity tests on me. The MD's stated that along with my other symptoms that include wasting, fasciculations all over my body, muscle cramps all over my body, voice problems including hoarseness, nasalness and now unable to articulate, swallowing problems, etc. DO THESE INDICATE LYME DISEASE. The MD's are stating without a doubt I have ALS? Any info will be greatly appreciated!!! Thank you, Al Pruett

 
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Old 10-21-2011, 08:33 PM   #14
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Re: Recently Diagnosed with A.L.S but praying...

Thank you for the response. Do my symptoms indicate Lyme and I live in Memphis. Do you have any info as to who might adequately test me for Lyme and/or treat me with antibiotics? Thank you, Al Pruett

 
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Old 01-22-2012, 03:01 PM   #15
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Re: Recently Diagnosed with A.L.S but praying...

My husband died of ALS in 2006. We had an idea something was wrong as he kept stumbling. It was confirmed in 2004, We tried Rilutek, gumbi gumbi, (an indigenous tea) Noni juice, bovine colestrum, naltrexone, anything. We don't even know if the rilutek helped because he lasted two years after he started taking it. The saddest part of ALS is that because you are still mentally alert it is frustrating. I cared for him for 2-3 years until I eventually had to put him into long term care, 4 months before he died because once on the bed when I detached him from the lifter, he'd get the wobbles. I still feel guilty but more so because I was at home when he died in LTC. I'd been up to see him but his death apparently was so peaceful they only rang me after he stopped breathing. I miss him.

 
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