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titaniumed
06-09-2008, 03:24 AM
Anyone out there with scoliosis with relatives with ALS or history of ALS?

My father passed from this absolutly horrible disease back in May 2000. He had scoliosis also like me but not as bad. It was limb onset. He was 79.

ALS is neuro. You lose your ability to control muscles. Once atrophy sets in, the muscle dies.

I know that the muscles in my back were and are not functioning correctly and are not balanced. Could this have happened due to decreased signals coming from the brain?

I have reason to believe that scoliosis is caused by imbalanced muscles due to neurological reasons. Im not saying that all scoliotic disorders are caused by ALS, there are quite a few defined neurological disorders and also non-defined that researchers are discovering.

Who Knows? I dont have ALS as my creatine levels were checked prior to my surgeries.

The big question? Why does scoliosis or any of these diseases happen?

Ed

txmarinemom
06-09-2008, 07:13 AM
Anyone out there with scoliosis with relatives with ALS or history of ALS?

My father passed from this absolutly horrible disease back in May 2000. He had scoliosis also like me but not as bad. It was limb onset.

I know you'd mentioned this about your father in an earlier correspondence we had, and you have my condolences, despite the years. I've known people with it, and yes, it's a horrible disease.

What exactly do you mean by "limb onset scoliosis"? I've never heard this term, and while scoliosis may *affect* the limbs (i.e., leg length discrepancies), it is (as we all know) a curvature of the spine. Are you indicating limb weakness resulting from ALS caused the spine to become misaligned? I'm not sure this is *technically* scoliosis, but I could very well be mistaken ...


I know that the muscles in my back were and are not functioning correctly and are not balanced. Could this have happened due to decreased signals coming from the brain?

Ed, this is kind of a "what came first ..." (chicken or the egg) question.

Were your muscles imbalanced because of the curvature, or were you curved because of the muscle imbalance? I see from your first post, you indicate a diagnosis at ±17 years old, which is very much in line with Adolescent Idiopathic Scoliosis (AIS). As I'm sure you know, JIS (Juvenile) and AIS are the two most common types of scoliosis.

Most often (not to say always), with IS, muscle imbalance results over time as a secondary effect to the structural issues (lateral curvature and rotation/torsion).

Less frequently, neuro-muscular scoliosis is seen, and it's typically congenital. Rarely is it ever present in the absence of a neurological condition (i.e., cerebral palsy, spina bifida, muscular dystrophies, Chiari malformation, tethered cord, etc.)


I have reason to believe that scoliosis is caused by imbalanced muscles due to neurological reasons.

Can you please share those reasons?


The big question? Why does scoliosis or any of these diseases happen?

Researchers have identified the first gene, CHD7, associated with Idiopathic Scoliosis. No one really knows how this will affect the future of treatment, if at all (I have to believe it will in some way, if only earlier diagnosis). Other than that, I don't think there's a definitive answer to your query.

Regards,
Pam

Pooka1
06-09-2008, 07:36 AM
What exactly do you mean by "limb onset scoliosis"? I've never heard this term, and while scoliosis may *affect* the limbs (i.e., leg length discrepancies), it is (as we all know) a curvature of the spine. Are you indicating limb weakness resulting from ALS caused the spine to become misaligned? I'm not sure this is *technically* scoliosis, but I could very well be mistaken ...

I don't know if this is relevant but didn't someone post a while ago about his research (peer-reviewed IIRC) showing that all kids with "pronated?" ankles have scoliosis or the other way around or something? He is in Europe somewhere and was not a woo-woo.

After reading that, I looked at my kids and their ankles are VERY collapsed inward. It's remarkable. Now whether that is caused by the scoliosis or has the same cause as scoliosis or even possibly causes scoliosis I don't know. It just seems like an astute observation that may go somewhere some day.

sharon

ETA: I found it. It was a site Ruth T. posted last November.

http://rothbartsfoot.info/Scoliosis.html

I didn't do any exhaustive research on this guy but he doesn't appear to be a woo-woo. But who knows.

txmarinemom
06-09-2008, 08:50 AM
Yeah, I have a girlfriend whose 10 year son was born with right side hemiplegia (similar to CP).

Years of favoring one side and his postural stance has resulted in a mild curvature (not even technically scoliosis) of ±8°.

Although that's well within the range of normal, the doctors believe it was caused by, and is likely to increase because of, the hemiplegia. The key is it wasn't there in his younger years - and seems to be progressing (although not rapidly).

Mainly, I'm just curious how/why Ed believes his scoliosis is neuro linked, and on what basis ...

And, I chuckled at "woo-woo" ... first laugh of the day :).

Regards,
Pam

titaniumed
06-11-2008, 10:54 PM
Hey guys,

The next time I start a thread at 1:24AM, go easy because Im not sleeping very well! Ive been having my ups and downs! It will be a long recovery for me as my surgeries were a little heavy duty.

Pam, Im sorry, Limb onset is one of the different types of ALS. It generally starts with one leg, then over to the next leg, and up to the arms etc. Bulbar onset is the other type which is really nasty as it usually starts with the throat.

"What came first?" chicken or egg? Good question. To help answer some of the questions I will need some help as I never studied pathology in school. Am I a woo-woo or a wee-wee? Years ago, I used to watch the Flintstones and Ive switched to watching the Research Channel and University of Washington. I dont know if you know about this but this is good stuff. Tons of great videos. I usually watch it at night, to fall asleep to.
Listen to James McDonald in this video. At 7:40 he mentions that there is evidence of defect in neuromusculature control. (if you want , research fast and slow twitch fibers and their relationship neurologically.) I remember this years ago from studying about fasciculations with ALS.

http://www.researchchannel.com/prog/displayevent.aspx?rID=9380&fID=345



At 22:14 one of the Doctors asks why the majority of the curves are apex right. This one probably has to do with the genes. Only identification of the genes in the future will prove it out. You have to remember that it is a 50:50 chance on which way the curve progresses so I feel that the musculature formation weighs heavily here. The balance of the tension. Once it goes past verticle the muscular tension becomes imbalanced and the rotation starts.

Hi Sharon, I see you have scoli twins. Do you have scoliosis? or any family member? This has got to be a one in a billion. I will be thinking about this one
for sure.

The pronated ankle theory is interesting since Im a skiier. I started skiing in 1962 with the old leather boots and leaning in constantly while edging on the east coast ice. My illiac crest heights are off about 10mm. One of my best friends was born with one leg. His wooden legs while he grew up were always off in length and he didnt get scoliosis. If anybody were to get scoliosis due to the pelvis being off it would have been him. I guess that neurologically he was ok ?

More scoli vids
University of Washington

http://www.uwtv.org/search/sitesearch.aspx

Wishing
06-12-2008, 07:40 AM
Thank you Titanium Ed for sharing this wonderful resource. I'm off to St. Louis this morning for surgery next Monday. I'll look forward to seeing these wonderful programs while I'm recovering. Thank you for sharing. Rita

Pooka1
06-13-2008, 07:46 PM
Hi Sharon, I see you have scoli twins. Do you have scoliosis? or any family member? This has got to be a one in a billion. I will be thinking about this one for sure.

Hi Ed. I'm glad you started posting again. You sound like an interesting cat and I was hoping you would stay after your initial few posts. The thing with you going to Hawai'i and swimming for several months which improved how you felt was beyond fascinating. I hope I'm remembering that correctly... I'm on vacation and just checking in with the group on this hotel lobby computer.

I do not have scoliosis. My husband has a cousin who does and she needed to be fused as a teenager. To my knowledge, there is nobody else on either side who has scoliosis. I wasn't aware that spontaneous cases of AIS don't occur. Also, my kids have some Marfan syndrome characteristics, one of which is scoliosis. Maybe that's why they have it. I'll write more about his on WNCmom's thread.


The pronated ankle theory is interesting since Im a skiier. I started skiing in 1962 with the old leather boots and leaning in constantly while edging on the east coast ice. My illiac crest heights are off about 10mm. One of my best friends was born with one leg. His wooden legs while he grew up were always off in length and he didnt get scoliosis. If anybody were to get scoliosis due to the pelvis being off it would have been him. I guess that neurologically he was ok?

Those are interesting observations. Much remains to be discovered about scoliosis, unfortunately.

Best regards,
sharon

pat
02-15-2009, 10:15 AM
Anyone out there with scoliosis with relatives with ALS or history of ALS?

Ed Our two daughters, both with scoliosis, have a grandmother who had bulbar ALS.
P

titaniumed
02-15-2009, 04:57 PM
Hi Pat

After 8 months, finally a response. I forget, but I think ALS is 1 out of 300,000 people. At what age was she diagnosed ? My dad was dxd at age 78 and passed 26 mos later. He also had a mild scoli, acquired as a senior.

Ed

Karen Ocker
02-15-2009, 05:15 PM
In over 40+ years as a medical professional: never seen it or heard of a connection. Since ~ 3% of the population has some type of scoliosis it would seem more obvious if that were the case.
Since life spans are longer ALS might become more prevalent in later years.

pat
02-16-2009, 09:29 AM
Hi Pat

After 8 months, finally a response. I forget, but I think ALS is 1 out of 300,000 people. At what age was she diagnosed ? My dad was dxd at age 78 and passed 26 mos later. He also had a mild scoli, acquired as a senior.

Ed She was diagnosed at 72, and passed 8 months later. She might have had a mild scoliosis, never diagnosed. And I've since learned (due to the girls' diagnosis) that I have a "mild scoliosis." ??

p

concerned dad
02-17-2009, 12:56 PM
My daughter has scoliosis and my mom (her grandmother) passed away from ALS. Onset of my moms ALS was at about age 81. And, we are not 100% sure it was indeed ALS. I think the death cert said "probable ALS" or something.

Karen Ocker
02-17-2009, 06:40 PM
My mother is 92 and her scoliosis is very prominent. It gradually increased over the years. She does not have ALS.

titaniumed
02-08-2013, 08:41 AM
My father passed from ALS. He also had scoliosis. A painful combination.

ALS patients now have more Medicare services which is something that years ago was meager at best. Its not just about supporting hospitals anymore!

Thank you Justice Reiss. You made a step in the right direction!

MEDICARE TO COVER MORE HEALTH SERVICES FOR ALS

On January 24, 2013, Vermont Chief Justice Christina Reiss signed off on a national settlement that will enable Medicare recipients with chronic conditions to receive home health services. In the past, only Medicare recipients with a reasonable chance of recovery were approved for home health services; now, all patients will be able to receive in-home speech therapy, occupational therapy, skilled nursing care and other therapies. This change was championed by the Center for Medicare Advocacy, whose class action law suit resulted in the new ruling. While there are qualifications--eligible patients must be Medicare-classified as "homebound," require services 5x per week, have their services prescribed by a doctor, and use a service agency certified by Medicare--this represents an undeniable victory for patients' rights. More information is available at the Hook Law Center and Medicare Advocacy.





http://www.medicareadvocacy.org/



Ed

rohrer01
02-08-2013, 09:33 AM
Hi, Ed.

My dad passed away a couple of years ago from what I believe was ALS. The docs said it was "mini-strokes", which he undeniably had. However, mini-strokes don't kill you the way my dad died. I talked with a couple of professors from my university and explained his symptoms and they all agreed that is was some form of MD. It took him about eight years to die from the serious onset of the disease. He had leg pain for decades and tended to drag his feet a little bit, something I also do. But when he hit about 70/71 years of age, the bilateral leg paralysis really set in. It moved upward until he was unable to walk. He was able to use his arms and hands for a few years, then he lost the use of both of them. He could be fed and move his head and face and talk clearly for a couple more years. Then his facial paralysis set into his lower jaw making it difficult for him to speak and eventually swallow. At the end, he struggled to keep his lungs clear as it appeared that he had difficulty expanding his rib cage and tried to breath with his flacid belly. He eventually succumbed to pneumonia. He never lost function of the ability to make expressions with his eyes, although blind from macular degeneration. The doctor's didn't care to diagnose him. He had horrible insurance and a GP that didn't give a hoot about an old man. It ANGERED me, to put it VERY mildly. It wouldn't have changed his eventual outcome, but as family I wanted to know, for sure, what we were dealing with. He was also 79 when he passed away. I know exactly how you feel losing someone, your DAD, that way. I'm still angry about the lack of diagnosis (he had blood tests which confirmed muscle digest in is blood, yet another indicator), but I'll eventually just have to accept that it was what it was.

I was also born with feet turned totally inward. My feet are straight now, but still have a little bony prominence on the outer edge between my ankles and little toes. I am also missing a fairly large foot muscle in my left foot. I never noticed until I had an EMG and that was one of the muscles that they needed to test and the doctor was shocked that it wasn't there. It's amazing how we can compensate! As a child and teen, and maybe even now, I tend to walk on the inside of my feet, surprisingly. It's the weak ankles. I didn't have the strength to ice skate until I was an adult.

It would seem very logical for scoliosis to be related to some of these muscular diseases.

Also, my grandmother with scoliosis had scleroderma (not muscular I know), which she amazingly survived. She died of breast cancer at 82 before the scleroderma took her. I think she was diagnosed with the scleroderma in her 40's or 50's. I have the Reynaud's phenomena that goes along with scleroderma and I pray that's as far as it ever goes.

rohrer01
02-08-2013, 09:36 AM
Oh, and my dad never received any therapy. He had hospice to help my step-mom with his day to day care and that's it. I think his quality of life could have been better if he did more than sit helplessly in a chair all day.

titaniumed
02-09-2013, 09:35 AM
Terminal diseases are a whole different program. Neuromuscular diseases are devastating, and to be denied or shunned by the system is deplorable, its not the American way. Years ago.....Medicare wouldn’t supply a wheelchair, MDA wouldn’t either....we were on our own. Medicare did pay the hospital a HUGE amount of money for a 2 week analysis....this money would have been better spent on neuro research which could have benefitted all of us. Paying into a system your whole life to have funds directed and “tapped” in the wrong manner, bleeding the system, is a criminal act.

People that are in need of assistance regardless of disorder, shouldn’t have to wrangle with a system when emotions cripple the thought process.

http://www.medicareadvocacy.org/hidden/highlight-improvement-standard/
Contact info
http://www.medicareadvocacy.org/about/contact-us-2/

Does the Jimmo Settlement Agreement only apply to people with certain diseases, diagnoses, or conditions?
A: No. The Settlement is not limited to particular conditions or diseases. It applies to anyone who requires silled services to maintain or slow deterioration regardless of the underlying illness, disability or injury.



Will the Jimmo Settement allow people to get coverage for physical therapy at home?

A. Yes. Physical therapy, speech and occupational therapies are covered service under the Medicare home health benefit. If the individual meets the other Medicare home health qualifying criteria, the Jimmo Settlement makes it clear that "maintenance therapy” can be covered under the home health benefit if a qualified therapist is required to ensure the care is safe and effective.



Ed

titaniumed
02-09-2013, 11:27 AM
I should have started a new thread because this applies to ALL of us. And by the way, this is NOW! So, if you need help now, you can get help.

I wouldn’t have found or known this info if it wasn’t for Steven and Barbara Byer and ALS worldwide. Thanks guys....
http://www.alsworldwide.org/


Ed