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Dear Dr,

I already have ALS but was wondering about treatment/research:

Is there any evidence that it is the nerves/neurons which die first ? Ive searched and read many articles but can not find any such evidence/proof.

Many thanks

Mom of two

12 Responses
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Avatar universal
I am havin some major pain in arms and legs and a little back pain. Told me that is was probably rumitory athroritis (miss spelled but hopefully you understand what i am meaning) Anyways fist it just started in my legs and know it has gone to my arms and back and a little in my neck. Had a cat scan Showed posably Siatic Nerve and so bone Dr. decided to do MRI. But I think the same thing is going to be said. My problem I have been to several Dr. And they do what they wanna do then tel me to stay on the meds. I am already on which are addictive and kinda heavy when you have kids. (as you know) so my question to you is is that how yours started. Mine started about 4 or 5 years ago in my legs not bad though but within the last 2 years i can't sleep, walk for a long time, stand for a long time or even sit for a long time. My step sons live 8 hours away and we have to stop about every hour for me to walk or atleast sterch and the hole time i am in the car i am constanly moving. My husband is a dream come true he rubs my legs, my arms. And it seems that the only way at night i might beable to sleep without the meds. for atleast and 1 or 2 is for me to lay on my back and him bend my knees back and then him lay putting preasure on my legs like he is stretching them out. Then after he does that for a bit he takes my arms a jerks them not real hard but enough for the muscle to feel stretched then i can sleep about at the most 2 hours then if he is up start all over or just say forget it and take the meds.  Sorry for the book but i need help ASAP.. I am tired of hurting.So if you can help me thank
you sooooooooooooooooooooooooo much.

tireofpain29
Helpful - 0
Avatar universal
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   In ALS (amyotrophic lateral sclerosis also called motor neuron disease) involves the dysfunction/death of alpha motor neurons in the spinal cord and/or in the brain.  Alpha motor neurons are the neurons that are responsible for motor movements (muscle contractions).  When these neurons die, then the muscle that they interact with becomes weak, and starts to degenerate (atrophy).  These muscles are also irritated due to lack of consistent nerve supply and often have twitches (fasicualations) and cramps.  The reason why the alpha motor neurons die in ALS is the subject of much current research, but the answer is not know for sure at this point.  A small number of ALS cases run in families and have bee attributed to the SOD1 gene (superoxide dismutase 1) which detoxifies free radicals.  Most cases of ALS are sporatic (do not run in families), but some have proposed that a similar buildup of free radicals or other toxins around the alpha motor neuron leads to their death.  
I hope this has been helpful.
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Avatar universal
You know, not every single symptom on the planet is caused by lyme disease.  Honestly, I'm getting sick of the lyme disease posts.
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Avatar universal
Lou Gehrig stayed at a vacation home in Lyme, CT.  

He played baseball in the grass... and developed a mysterious ilness they named after him.

On another note...

BIG study just completed. Last I heard there were 156 plus patients enrolled (that was part way through) who were THOUGHT to originally have ALS.  Turned out it was Lyme and coinfections.. and they had been misdiagnosed.

Other ALS studies of patients being treated with antibiotics.  Showed improvement.. but they don't know "why"???  

It is the same antibiotic that is used to treat Lyme disease.

Happy New Year!

Helpful - 0
Avatar universal
He means Lyme disease and I agree.
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Avatar universal
Hi all,

I'm still doing pretty good, can still eat & drink and walk with help...I use a scooter indoors & out. I have a great loving supportive Partner.

Ive been down the mimic ALS route more than once...Ive had two Lyme's test both were negative although I know the tests aren't 100%, repeated all the test and all I hear from my neuro is I have an unusual form of a motor neurone disease = ALS here in UK.

Wishing everyone good health & Happy new year

Mot xx
Helpful - 0
Avatar universal
Let me correct my previous statement: I think this is what he may be considering.

With that said, I apologize for not mentioning that earlier. It would be a very smart idea to research this possibility.


Good Luck!
JCmcc.
Helpful - 0
Avatar universal
Have you explored differential diagnoses that mimic ALS??  And MS and Lupus, AND every other similiar disease???  Take a look around,,,might be REAL surprised!!  my e-mail is saramy 'at' ptcnet.net obviously replacing the 'at' with the proper e-mail symbol.(so dont get additional spam)
  MY uncle died of supposed ALS,,,another of supposed MS,,,now I am NOT so sure!!!  I am afflicted with something eerily similiar!!!IB--just don--
  PS. yes you ARE too young for such a dx.  I am truly sorry for your pain,,,but be SURE of what you have,,,dont guess!!  PSS...I DONT have all the answers in the world either.!!!

  Be well,,,and Merry Christmas!!
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Avatar universal
Jcmm - is it possible to get your e-mail? You seem very informed and I want to ask you some specific questions regarding your MS diagnosis.

Mom of 2 - God bless you. I think it's important for all of us to remember to live each day to it's fullest. Any one of us could die in a car crash tomorrow or crossing the street for that matter. Remember when an AIDs diagnosis was practically a death sentence? Now it can be managed with medication and people are living full lives with it. It could happen with ALS too. Keep faith.

Happy holidays to you both!
Helpful - 0
Avatar universal
YES! That is the spirit. Wow-how I am totally proud and in awe over your attitude.
6.5 years? How are you feeling? Are you up and about, driving, living, etc?
Have you heard of Low Dose Naltrexone? Google it, Mom.

Lv,
J.
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Avatar universal
Hi JCmcc,

Thanks, Ms can sure be as bad as ALS at times, sure wish & hope a cure comes soon for all diseases.

I'll never give up, I love life and my family too much for that...Ironically I was only 22 yo when ALS struck that was over 6.5 years ago. ALS picked a fight with the wrong person this time, I just wished others had the hope and courage to fight ALS as I and many others do.

I run a live ALS chatroom which helps all my friends who chat there, we have many laughs and if you were to go in the room you wouldn't think we all had ALS, its a great comfort to get support from others in the same situation.

I see it like this, there are many people in the world worse of than my self.

Wishing everyone a Jolly merry Christmas and a happy new year.
Helpful - 0
Avatar universal
Mam,
  I just want you to know that as a victim of MS and LD, which is not nearly horrific-that I want you to know that my heart goes out to you-NEVER STOP FIGHTING, NEVER!
   I know that this is the internet, and you do not know me-but please-never give up hope.
Helpful - 0

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