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Thread: Hello - I'm back and developed osteopenia

  1. #16
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    Quote Originally Posted by rohrer01 View Post
    Sorry, I had to keep things going on this thread. I couldn't start a new one for some reason.

    Just wanted you all know I got accepted to start graduate school in the Fall. I have been diagnosed with autosomal dominant mononeuropothy of the median nerve (MNMN). This is related to Charcot Marie Tooth disease. However, taking a look at my genetic screening made me question the severity of my symptoms and that of 80 -90% of my relatives related to my dad have neurologic symptoms...some have scoliosis. Scoliosis is very common among other neurologic problems. I have a variant in my DNA that is unstudied and is in the coding region for a protein that causes a nasty dominant form of CMT. I'm going back to school to study this variant, a single nucleotide polymorphism that results in the switch in an amino acid in this vital protein (for all you fellow science geeks out there). I do not believe that scoliosis is truly ever idiopathic, but caused by some other undetected disease process or gene mutation. Idiopathic just means, "We don't know, and stems from the root word idiot." I do believe that most cases are unique and should be looked at on a case by case basis. I am determined to get to the root of MY family's genetic problem. Not everyone has scoliosis, but enough do to make me hypothesize that it is a variable symptom over a wide range of symptoms that make us suffer. If I'm chasing a red herring, I'll figure that out. I'll try to keep you all updated. I will be taking mostly classes at first until this Covid-19 virus dies down. Please, everyone stay safe and wear your masks.

    Rohrer01
    Congratulations! I hope the experience is incredibly rewarding.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  2. #17
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    Quote Originally Posted by rohrer01 View Post
    Idiopathic just means, "We don't know, and stems from the root word idiot."
    I needed a good laugh....

    We are no strangers to neurologic conditions, that's for sure. Just because there is no diagnosis doesn't rule it out....

    It took a really long time for my father's ALS diagnosis. Over a year....I have all his detailed notes prior to his diagnosis.

    It would be nice if we had a computer interface that could tell us these things.

    Sounds very exciting!

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #18
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    Rohrer very glad to hear from you.

    Good luck in grad school. You will be a star. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    Thanks, everyone! I will do my best. It's been 17 years. I've been studying up all spring and summer. This is really exciting!

    Ed, I'm sorry about your dad.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #20
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    Thanks...

    I have to mention that if you read about neuropathies..... viral infections are listed as a possible cause.

    Here is a story about a duck you will find interesting. (and viruses penetrating the blood brain barrier, causing neurodegeneration)

    https://www.the-scientist.com/featur...eration--65498

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #21
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    Quote Originally Posted by titaniumed View Post
    Thanks...

    I have to mention that if you read about neuropathies..... viral infections are listed as a possible cause.

    Here is a story about a duck you will find interesting. (and viruses penetrating the blood brain barrier, causing neurodegeneration)

    https://www.the-scientist.com/featur...eration--65498

    Ed
    That was pretty interesting. Along with all the negative evidence about virus and neuropathy, even if virus can cause some neuropathies, it may be the case that they are only associated with a very small fraction of the cases. So while polio can be associated with scoliosis, it is clearly not the main cause.
    Last edited by Pooka1; 07-04-2020 at 02:21 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #22
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    Quote Originally Posted by Pooka1 View Post
    it may be eh case that they are only associated with a very small fraction of the cases.
    Sort of like the ducks in the video. If one has the bird flu and Parkinson's, what is happening with the others especially with the high transmission rates. Ducks don't know about social distancing. (smiley face) Social flying, yes, social distancing, no.

    They fly in a triangle formation. You know why they follow the one up front? Because he is the one with the map. -Benny Hill

    There is evidence....no slam dunk studies as Dr Smeyene says, but there is evidence, which is hard to ignore.

    Interesting how viruses travel through nerves.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  8. #23
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    The Benny Hill references never fail to make my day, Ed. Thanks. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #24
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    Mar 2010
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    You guys are making me feel old just for the fact that I know who Benny Hill is!...lol

    As we all know viruses can be nasty little things. It doesn't surprise me. That's another good reason doctors should be looking past the scoliosis for an underlying cause...case by case.

    You can also have perfectly good DNA and defective proteins. Sometimes the proteins are methylated in the cell either too much or too little. This is caused by outside factors such as what we eat or our moms ate when pregnant or stress or toxins, etc. It's the science of Epigenetics. Once this happens to you, you pass on defective gametes to your children. Yay, it just keeps getting better!
    (Please note the sarcasm in that last statement). :-O
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  10. #25
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    Quote Originally Posted by rohrer01 View Post
    You guys are making me feel old just for the fact that I know who Benny Hill is!...lol
    Yeah, I suppose it's been awhile...1978 was when the show came to the states and was an instant hit, we wouldn't miss it. I used his comedy in my early scoliosis days, and then didn't watch the show for decades. It was during my scoliosis surgery recovery in 2008 that I re-discovered the show online, and used his comedy for stress reduction, depression, and lifting spirits....

    After I saw the duck with Parkinson's, (so sad) this is what I thought of in regards to avian flu. Bird jokes, by Benny Hill. I suppose a reaction to the seriousness of the situation we are up against today.

    Pigeon English
    https://www.youtube.com/watch?v=4Wet1bWxFo8

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #26
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    Ed,
    We have to keep a sense of humor or we will go mad. I remember watching Benny Hill. My husband and I sometimes watch the old Dean Martin comedy hour on the internet. It's a temporary distraction and we get a few laughs.

    I think I reported to you all a while back that my scoliosis had improved. I checked my online chart and the doctor's note said I topped 50 degrees. So, nope, it hasn't improved.

    I should be sleeping or studying. But I do enjoy the chats we have on here.
    Stay safe!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #27
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    Quote Originally Posted by rohrer01 View Post
    Ed,
    I think I reported to you all a while back that my scoliosis had improved. I checked my online chart and the doctor's note said I topped 50 degrees. So, nope, it hasn't improved.
    Growing old with scoliosis can be like a security that pays a 5% dividend, but loses 6% year after year. (And owe taxes on the dividend!) Bad days will present themselves, and then we recover somewhat and feel good about things until pain presents itself again. This seems to be what it's like (pain cycles) having unfused large (50 degree plus) surgical curves, or for me anyway. The degenerative process weighs more than the curves...It can present a lot of problems. DDD, collapsing discs, stenosis, impingement of nerves etc. I guess you can also assume that neurological disease in adults falls into the degenerative category somewhat....this adds to the battle. Degenerating neurons....What the heck is that? I guess many go through this learning curve at some point in their lives with themselves or relatives when disease rears its ugly head.

    Have you posted an x-ray lately? I think it's been a number of years since you have done that. I don't remember. Retirement has had this effect on me, defusing all stresses...unwinding the mind.

    I would guess that you will probably have to visit with a scoliosis surgeon or neurologist with some sort of frequency....How often, I don't know...

    I followed a lady who RV'd down in Mexico years ago. She had (non-scoli) back pains flair up over a 3 month period, and a doctor discovered that her L2 and L3 were completely surrounded by cancer. This diagnosis all with an x-ray. 2 specialists flew from Mexico City to Lake Chapala and did emergency surgery right away. She ended up leaving her RV in Mexico and flew to an Oncology center in Houston.

    Pain is your indicator.

    As Bill Engvall would joke.... "Here's your sign" (I have never posted any Bill Engvall comedy here, maybe I should) The Bill Engvall catalyst for specialist visits!

    With that kind of diagnosis, you need a lot of comedy that's for sure.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #28
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    Scientist warn of COVID linked brain damage.... This is todays article.

    https://www.reuters.com/article/us-h...-idUSKBN24837S

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  14. #29
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    Mar 2010
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    The brain evidence doesn't surprise me. Good old herpes retreats into the nerves, not to mention mono causing long term disease. I could go on and on. Viruses change our DNA sequencing, so no surprise there. They use deactivated viruses for targeted gene therapy.

    My last true scoliosis radiography was done 2-1/2 years ago. I had laying radiography done a couple of months ago. That never tells the whole story. I get pretty severe chest pain and they have to rule out my heart condition.

    Pain is the story of my life. I guess I just learn to put up with it more now. I'm supposed to get scoliosis screenings every two to five years. I still do that because I want to know the status of my situation. But I am no longer interested in having a fusion. The risks, in my opinion, outweigh the benefits at this point. I'm losing bone mass and I have a rare curve that, to this date, still no one has seen anything like. My whole spine is affected....top to bottom. I have three or four bulging discs in my neck that will most likely have to be addressed at some point and one bad lumbar disc. But a full fusion at my age and with my other health concerns is pretty much off the table. It's slow progressing. I wish my mother hadn't denied me surgery at 16 when they wanted to do it. But that's water under the bridge.

    Y'all take care!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #30
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    May 2008
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    reno,nevada
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    Devices for the un-fused

    I stumbled across this site that has all sorts of devices....It's sort of like the Home Depot for scoliosis patients....(smiley face)
    https://www.necksolutions.com/store/

    For lumbar stretching, I used to own a machine similar to this one years ago
    https://www.youtube.com/watch?v=lyF-O1_a2SE

    I also owned one of these arch tables. These work quite well for stretching with little or no effort. I paid about $300 for mine.
    http://spinaldecompressionmachines.n...ersion-bridge/


    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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