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Old 02-19-2017, 03:41 PM
 
Location: New Albany, Indiana (Greater Louisville)
10,164 posts, read 21,609,361 times
Reputation: 9797

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I've been having some unpleasant symptoms for about a year but have never gotten a final diagnosis. Any feedback would be appreciated. It's having a significant impact on my quality of life and I'm fearful that age 33 I'll never know good health again.


Around March 2016 I started having increased mid back pain, a couple weeks later I started getting twitches on the bottom of my foot and my eye lid. In May 2016 I woke up one night and my legs felt 'dead' and numb, though my strength level was fine and I could walk. A couple weeks later on back to back nights I had severe tremors between the hip and knee and was hospitalized. Since then I go through phases where I'm mostly better, sometimes I'm mostly better but with back pain and some muscle twitches, sometimes I'm in severe discomfort. During 'attacks' I become very thirsty. Do back stretches or yoga always makes the problem flare up again, my entire back feels pretty sore afterward. I'll get muscle twitches all over but the most severe spams are in my thighs.


During my hospitalization they tested blood work and did a Cat Scan and entire body MRI. Later I had an electric shock test on muscle contractions. The only thing that was not normal was a bulging / herniated disc between T11 & T12, moderate to severe stenosis, and a minor neck spur.


Further background info is that due to many childhood traumas I have severe problems with anxiety and periodic problems with depression. I made significant diet changes in Dec 2016 that helped reduce my resting heart rate from 100 to 80. But it hasn't helped with It.
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Old 02-20-2017, 05:55 PM
 
23,458 posts, read 17,609,136 times
Reputation: 9969
Quote:
Originally Posted by censusdata View Post
I've been having some unpleasant symptoms for about a year but have never gotten a final diagnosis. Any feedback would be appreciated. It's having a significant impact on my quality of life and I'm fearful that age 33 I'll never know good health again.


Around March 2016 I started having increased mid back pain, a couple weeks later I started getting twitches on the bottom of my foot and my eye lid. In May 2016 I woke up one night and my legs felt 'dead' and numb, though my strength level was fine and I could walk. A couple weeks later on back to back nights I had severe tremors between the hip and knee and was hospitalized. Since then I go through phases where I'm mostly better, sometimes I'm mostly better but with back pain and some muscle twitches, sometimes I'm in severe discomfort. During 'attacks' I become very thirsty. Do back stretches or yoga always makes the problem flare up again, my entire back feels pretty sore afterward. I'll get muscle twitches all over but the most severe spams are in my thighs.


During my hospitalization they tested blood work and did a Cat Scan and entire body MRI. Later I had an electric shock test on muscle contractions. The only thing that was not normal was a bulging / herniated disc between T11 & T12, moderate to severe stenosis, and a minor neck spur.


Further background info is that due to many childhood traumas I have severe problems with anxiety and periodic problems with depression. I made significant diet changes in Dec 2016 that helped reduce my resting heart rate from 100 to 80. But it hasn't helped with It.
You said the doctor hasn't given you a final diagnosis. What has he said? Did he suggest it might have something to do with the stenosis? You might consider seeing another doctor if the one you're seeing can't make a diagnosis. Hopefully it's something that can treated without surgery.

Ask your doctor if using an inversion table might help with your problem. I don't know if it would or not, but it's something you might look into.

https://inversiontable-teeterhangups...and-treatments
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Old 02-20-2017, 06:35 PM
 
Location: New Albany, Indiana (Greater Louisville)
10,164 posts, read 21,609,361 times
Reputation: 9797
Quote:
Originally Posted by Mike555 View Post
You said the doctor hasn't given you a final diagnosis. What has he said? Did he suggest it might have something to do with the stenosis? You might consider seeing another doctor if the one you're seeing can't make a diagnosis. Hopefully it's something that can treated without surgery.

Ask your doctor if using an inversion table might help with your problem. I don't know if it would or not, but it's something you might look into.

https://inversiontable-teeterhangups...and-treatments
When I was in the ER the neuro team said they didn't think most of my symptoms could be explained by stenosis and pinched nerves but the back Dr. that came later said it could explain a lot of it. Neuro Dr. who did the EMG test said it the muscle twitches were probably benign and due to stress. The bad thing is everyone recommended back stretches to improve the problem but every flare up in symptoms seems to occur after I try more stretching. I tried a 20 minute beginner yoga video Saturday night and my entire back is still very sore and stiff. I stretch slowly and mindfully but the result is always the same.


The good news is my symptoms do improve after a few days and are usually no worse than some tingling / numbness and occasional muscle twitches. I just wish I knew more specifically how to prevent flare ups and permanently heal. I am going to my regular doctor soon and will try to see a back doctor.
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Old 02-21-2017, 05:53 PM
 
23,458 posts, read 17,609,136 times
Reputation: 9969
Quote:
Originally Posted by censusdata View Post
When I was in the ER the neuro team said they didn't think most of my symptoms could be explained by stenosis and pinched nerves but the back Dr. that came later said it could explain a lot of it. Neuro Dr. who did the EMG test said it the muscle twitches were probably benign and due to stress. The bad thing is everyone recommended back stretches to improve the problem but every flare up in symptoms seems to occur after I try more stretching. I tried a 20 minute beginner yoga video Saturday night and my entire back is still very sore and stiff. I stretch slowly and mindfully but the result is always the same.


The good news is my symptoms do improve after a few days and are usually no worse than some tingling / numbness and occasional muscle twitches. I just wish I knew more specifically how to prevent flare ups and permanently heal. I am going to my regular doctor soon and will try to see a back doctor.
Hopefully your regular doctor and the back doctor can help you. I would ask them if using an inversion table could help. The difference between the stretching you've tried and the inversion table is that with the inversion table gravity decompresses the spine instead of you forcing a stretch. Whether it will help, I don't know. But it's worth looking into. Good luck.
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Old 02-25-2017, 09:46 AM
 
Location: New Albany, Indiana (Greater Louisville)
10,164 posts, read 21,609,361 times
Reputation: 9797
I went back to my regular doctor and he is adamant that the only cause is low B12, even though my B12 levels have always been between 601 and 833 and a normal scale of 200 to 1100. He says it has nothing to do with a minor bone spur in the neck, stenosis, or a bulging disc. He believes that my B12 gets so low that I have a pseudo seizure, my back hurts because the back muscles seize, too. The stretching didn't cause the problems, the exercise along with it fatigued my muscles. He has me on B12 and folate from a compound pharmacy.


I will take the B12 and folate but also have scheduled an appointment with another doctor to get a second opinion. Whether it's only B12 I do tend to think that it is not related to any back issues since they wouldn't cause body wide tingling. My 3 worst flare ups all occurred after physically strenuous activity. But I've done similar activity many other times with no flare ups.
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Old Yesterday, 05:36 AM
 
Location: New Albany, Indiana (Greater Louisville)
10,164 posts, read 21,609,361 times
Reputation: 9797
An update: I was diagnosed as having a Functional Movement Disorder, also called a Psychogenic Movement Disorder. It causes similar symptoms to other conditions but generally doesn't digress into far more serious / life threatening problems.
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Old Yesterday, 07:32 AM
 
Location: Scottsdale, AZ
9,431 posts, read 5,838,031 times
Reputation: 34805
So it took three years to get a definitive diagnosis? I'm sorry you had to go through that. Presumably, though, you've gotten a referral to a psychiatrist familiar with PMD.


Best of luck going forward.
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Old Yesterday, 08:06 AM
 
Location: New Albany, Indiana (Greater Louisville)
10,164 posts, read 21,609,361 times
Reputation: 9797
I was diagnosed summer 2018, about two years after symptoms started. I wasn't given any advice on how to treat it, I basically just deal with it. It was a relief to be definitively told it wasn't something like ALS or Parkinson's. I decided to bump this thread in case anyone has similar problems since it is notoriously hard to get an answer.
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Old Today, 05:40 AM
 
Location: Scottsdale, AZ
9,431 posts, read 5,838,031 times
Reputation: 34805
PMD is treated by addressing the underlying psychological damage, i.e. childhood trauma and anxiety. Even if you didn't have a movement disorder, getting help would quite likely improve your quality of life. Just something to consider.
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