Status
Not open for further replies.

Wjameslane

New member
Joined
Sep 7, 2014
Messages
8
Reason
Lost a loved one
Diagnosis
06/2011
Country
US
State
Arizona
City
Scottsdale
Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?

Dear Bulbar ALS patients, friends and family. The most helpful thing you can do is purchase a saliva pump machine like dentists have for under $100 for the person suffering from bulbar ALS. My mom used her saliva machine very frequently throughout the day while she had a feeding tube in later stages.

Secondly a very important thing to consider during early neurological symptoms for Bulbar & non-bulbar ALS is the cause may be cervical spondlyotic myelopathy. EVEN bulbar symptoms can be related to CSM if there is spinal stenosis at the C1 and C2 region. The universal medical misconception is that the cranial nerves alone which are in the brain control the tongue, however the hypoglossal nerve controls the tongue and is connected to the cervical spine at the C1 and C2 location. Explain this fact to your neurologist and ask them why the narrowing of the spine at c1 and c2 can't cause tongue twitches and why it's not a spinal issue and probably ALS even though arm and leg twitching can be non-ALS related with cervical spondlyotic myelopathy. This doesn't make sense and I think ALS is a misdiagnosis which surgery could help during early symptoms by opening the nerve pathways at C1 and C2 for bulbar and in the area of the spine that controls where your neurological symptoms are occuring. Once too many motor neurons are destroyed it's too late...good luck and god bless your strength.
 
Re: Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?

Thanks for the tip.
 
Re: Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?

You're welcome, I hope my research and experience can help you.
 
Re: Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?

I read your caption Atsugi... I'm sorry for your loss. Unfortunately my research was too late for us as well, but my mom had several years of medical history on her spine due to a work comp case and I hope I can use her case to help others and solve the mystery of ALS... My mother was rearended after her work comp case was resolved and thats when the new new symptoms started and thats when the C1 & C2 change showed up on her MRI. Everything I've researched and read points to a spinal structural issue causing the "ALS" symptoms which made me wonder how many others have experienced the same misfortune of a misdiagnosis. The reason I believe there are over 100 genetic mutations with no correlation in ALS is because the nerve signals traveling through the brain & spine are being sent off in the wrong direction by some sort of obstruction or narrowing and overexciting the motor neurons. I've yet to prove myself wrong on this theory and I've spent the last 3 years proving myself wrong and hitting dead ends. Cervical Spondlyotic Myeopathy/cervical stenois is the answer I'm 99.9 percent sure and NOT ALS. Whether surgery will help is up to the skill of the neurosurgean and the stage of the disease.. Hope this message finds someone and they find a neurosurgean to cure them with early neurological symptoms. Slurred speech and the hint of difficulty speaking immediate surgery at C1 & C2 should be requested if anything shows up abnormal in that region of the spine... The type of surgery that should be done I'm not 100% sure yet but this is where the research should be directed not the random 100 different mutated genes and some expensive pill to help...
 
Re: Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?

UPDATE: building on my theory that ALS is cervical spondlyotic myeopathy & stenosis which took me 3 years researching ALS and alternatives and 6 years worth of my mother's spinal medical history. Genetic ALS patient's symptoms and causes have no distinction with random onset correct? My explanation would be younger ALS diagnosed patients had minor spinal complications at birth or have genetically narrower spines (whether their stenosis is minor shouldn't depreciate the fact that someone that young I'd imagine shouldn't have any stenosis at all right?). So what? Well our nervous system acts like a circuit system. Ask a mechanic what happens when a relay goes bad. He'll tell you all kinds of random symptoms. Sounds familiar right? Well we actually have neurons called relay neurons. How come they aren't mentioned in correlation to ALS? Well the relay neurons send the message to the motor neurons. What do you think happens with obstruction of the neurological path, my guess is the death of relay neurons which then causes the death of the motor neurons. Well how do we repair the relay system? Surgery will help the path but then we need stem cells to repair the relays, motor neurons and the protection of the motor neurons. In regards to Bulbar ALS, C1 and C2 are connected to the tongue nerve so if I had bulbar ALS I'd get decompression surgery and try to get stem cells injected into my C1, C2 and C3 spine. With the tongue not working saliva gets in the lungs so C1 is the important area missing from the stem cell research for ALS I'm about to present: http://onlinelibrary.wiley.com/doi/10.1002/ana.24113/full
 
Stem cells will cure ALS in coming years. The only flaws in the research I found was the C1 spinal area was not given the stem cells for Bulbar ALS patients and the C1-C2 spine is connected to the tongue nerve. Without the use of the tongue, saliva gets in the lungs which is the most common cause of death for Bulbar ALS patients. For ALS patients without bulbar symptoms their stem cells should be injected in the portion of the spine controlling the area of their body presenting the symptoms. In addition if ALS is really cervical spondlyotic myeopathy/stenosis then a neurosurgeon's advice would be helpful on the correction of the structure of the spine, no matter how "minor" it may be. Here's the current Stem Cell research I found for ALS: Intraspinal neural stem cell transplantation in amyotrophic lateral sclerosis: Phase 1 trial outcomes - Feldman - 2014 - Annals of Neurology - Wiley Online Library
 
Granted we may be years away from a total cure with Stem Cell Research, BUT lets keep up hope and push the Stem Cell movement forward! Demand to be included in clinical trials. Here's a August 2014 update from Harvard's stem cell department, "Progress Against ALS":

Progress against ALS | Harvard Gazette

Here are more resources given to me from HSCI:

"Recently a team of Harvard stem cell researchers has succeeded in reprogramming adult mouse skin cells directly into the type of motor neurons damaged in ALS. These new cells, called induced motor neurons (iMNs), can be used to study the diseases and to develop treatments for them. I have sent your email to one of the scientists working on ALS and will get back to you with more information if he feels there is anything to add to my email.



Although the work is very much in progress, we are not yet working on clinical trials involving patients.

However, it may be useful to look at the HSCI Link page http://www.hsci.harvard.edu/useful-links and in particular at the National Clinical Trials web site Home - ClinicalTrials.gov
 
Re: Do you have Bulbar/ALS or Cervical Spondlyotic Myelopathy?

My dad has spondylosis at c2-c3 and said he started having swallowing issues after, that he had to research himself how to swallow. We thought it was because they went thru the neck but he was diagnosed with ALS 2 years later but had no symptoms in between prior to the muscle twitch in his bicep 4 months before diagnosis and cramping a few months prior to that.
 
Jim, I appreciate your endeavors but I'm concerned because your posts may be misconstrued as coming from an ALS researcher.

You mention "your" research and experience surrounded by some really big scientific words. This could lead someone to wrongly believe you are a molecular biologist.

My understanding is that your experience is in accounting, no?
 
The differential diagnosis is wrong. I'll actually be filing a lawsuit against UCLA for the error to get it updated and corrected for bulbar patients. Some ivey leager got 100 percent on their spinal neurology exam when the question about cranial nerves controlling the facial region came up. Maybe they should have talked to the throat doctor who should know the hypoglossal nerve which controls the tongue is also connected at the C1 and c2 area of the spine. Is it just chilling there for looks? Ive been passionate about my research and had all the info in front of me to figure it out. There is no situation where ALS symptoms occur and there's nothing structurally wrong with the spine. The doctors will just say it's minimal. Well minimal .mm in the wrong location causes paralyzation. The real problem and truth is no one knows how to fix the complex spinal system systematic shutdown from injury and genetically narrow spines. We live in a world of lawsuits and how can anyone sue a doctor or insurance company if they have ALS? The point is if you get into a car wreck and start having ALS symptoms and there is no cure, the insurance companies would get ripped a new one if the accident was blamed. In regards to the C1-C2 spinal area that isn't getting stem cell injections its because one there isn't enough funding (from the words of Dr Feldman herself) for the more rare bulbar als patients and secondly if injections were made and the bulbar als patients speedily pass away perhaps they are concerned of a lawsuit (my assumption). Or perhaps they can't know everything and haven't spent the time like I have connecting everything with 8 years of my mother's medical records and 3 and a half years of reading scientific explanations. My mother fit bulbar als to the T but iv seen all the MRIs, cat scans, xrays, and EMGs and I know enough to see the structural failure of her spine before the EMGs started showing anything and the flying unicorn of a disease that can't be explained is bullshit. The truth is there hasn't been enough funding to fix the problem and it would be an insurance companies nightmare if ALS was connected to spinal injury.
 
WJAMESLANE, you said: “The differential diagnosis is wrong. I'll actually be filing a lawsuit against UCLA for the error…Or perhaps they can't know everything and haven't spent the time like I have connecting everything with 8 years of my mother's medical records and 3 and a half years of reading scientific explanations… it would be an insurance companies nightmare if ALS was connected to spinal injury.“

While I appreciate your view and your years of studying your mother’s medical record, it concerns me that readers of this site might be confused by your personal views that are in sharp contrast to those of trained medical scientists.

Aren’t you a life-long accountant, very busy business manager, and successful politician without any medical training whatsoever? What exactly are your medical or scientific credentials, that you feel you can pass judgment on ALS research?
 
I don't have any C1-C2 problems that I know of, yet aspirate on liquids and have tongue tremors, vocal cord loss, and speech difficulties.

I have L5-S1 narrowing, causing inflammation of bone on bone. This came on two years ago at the same time as my earliest bulbar symptoms. I cannot walk erect as a result. Before ALS diagnosis, two neurosurgeons recommended only ibuprofen. I don't have the typical sciatic pain from L5-S1. The pain is all right there at the junction.

A chiropractor who I class as a quack, would not take medicare; wanted $4K cash to put me on a rack twice a week to stretch my spine.

GB
 
just fyi I have been told that the waiting list for stem cell trials is several thousand long.
 
Greybeard, I'm so sorry to hear of your misfortune and suffering.. God bless your strength. Do you use a saliva machine to help manage mucus and comfort? As you said, your symptoms are different but you can still see the structural problems in the spinal area that controls the legs correct? With the onset of bulbar symptoms usually the doctor gives you the barium test and also gets an MRI of your neck to rule out bone spurs touching your esophagus. After they do the MRI and tell you there is no compression and you have Bulbar ALS I'd be willing to bet on the MRI you have somewhere at home of your neck that there are issues at the C1 and c2 region. Most likely the MRI results of the neck states minimal stenosis and bone spurs. That's all it takes. Unfortunately surgery rarely fixes the problem and Stem Cell research is the best bet for ALS patients. Perhaps outside the US if you are daring. I'm not a professional in the medical field and all my knowledge is from personal medical articles, studies and readings in the medical field. I've tested at a 140 IQ and if there is any validity to my score I've tried to use my logic and problem solving skills to help those who suffer from the most debilitating disease of the mind and body...
 
Status
Not open for further replies.
Back
Top