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Does anyone have or heard of a neurological/muscular disorder related to trauma or something else.

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Eniru

I am at wits end dealing with the medical profession! I have been to 3 neurologists, my internist numerous times, and my symptoms continue to get worse. In the past 4 years I have gone from walking 10 miles or more a day (with work/and without) to not being able to completely walk through a grocery store without a lot of pain and using the cart as a walker of sorts. Some 25 years ago I was told by a doctor that there was definitely not "right" with my left side. He said I could have Multiple Sclerosis but they wouldn't figure it out for 20 years! At the time I just had muscle movements and tingling in my feet and legs.

Four years ago I started feeling like I was walking like I was intoxicated at times. Then it got more difficult to lift even grocery bags. I quit working. Since then I would have difficulty mowing the grass (very small yard). I saw a neurologist for multiple sclerosis but it was ruled out.

In April of 2016 my left leg began jerking, then my arm would tremor to the point that I couldn't hold a glass after using the weed whacker. It has gone downhill since than. The jerking became more spasms and cramping in all parts of my body. My upper body began jerking and having spasms. At first it was all left sided but is now effecting both sides. I have been told that I have restless legs all over my body. That it is just anxiety. My current neurologist says it has characteristics of a stroke and MS but is neither one. I am on mega doses of medication to control the movements that have been extremely painful.

I have read something in the past about a functional neurological disorder associated with trauma but just couldn't believe that so I thought I would throw it out here and see if anyone else has something similar. Any help would be very much appreciated.

Sorry for the length!
 
Any B12 deficiency or anything like that at all? Did they check all that?#
 
I have hereditary spastic paraplegia, which is hereditary and not trauma related but in some respects looks like what your experience is. It's a rare disorder. Must rule out ms first. Leg jerking sounds like restless leg syndrome easy to look that one up.
 
Thank you for your responses.

Ujere - My potassium is good.
Oce - My B12 is good.
Elude - I am sorry that you have to deal with the spastic paraplegia. I looked it up. There are some similarities. I have been diagnosed with restless legs in the past but this is nothing like that.
When I am not on baclofen at the maximum dose my body jerks so hard that my neck, knees, ankles make cracking noises. My arms flay around. My head and chest go backward. My feet lock into place in a downward way and I have to physically move them or have my hubby do so to get them back to the correct position. It comes in bursts that can last minutes or hours daytime or night time. It is exhausting and extremely painful. Even with the medication I still have occasional bursts of activity.

I only brought up the trauma because I had someone at the ER tell me with my Trauma history this could happen. He was a jerk and was in a hurry to move on. I hate these computerized medical records because people decide before they even examine you that it is all in your head.

I have asked for genetic testing for a disease that does run in my family but was blown off by the first two neurologist. My current one said that only happens in infants but it is a storage disease that in adults has dystonia like symptoms.

I will keep searching until I find an answer.
 
Well you would to my understanding of baclofen be having spasticity as that is also the drug I take. The neurologist also put gabapentin with the baclofen so the spasm are less painful. To stop the jerking I take zanaflex at bedtime. Until he gave me that, yes the jerking drove me crazy. When you lay down the muscles try to resist relaxed position so in a way they think they need to move which activates that up down sensation of the leg. Day time stretching is really important.
 
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Twelve years ago doctors thought I had early ms or parkinsons even though the scans were clear. I was eventually diagnosed with minieres but never loss hearing so they tossed that. I was trembling so much I couldn't hold glasses or knives. I bought all plastic because I was breaking my dishes. I stopped cooking. I fell nearly every day. Walked with a cane for almost 18 months. My depth perception left me and I kept bumping things with my car. I remember one morning the vertigo was so bad and my legs so weak, I crawled to the bathroom. My out of pocket costs for all the tests, including having nodes attached to my head for three days, was over $10k. That was with insurance and about a tenth of the total cost.

I had left therapy because I thought I didn't need it. I went back. We started doing somatic psychotherapy. Very specific trauma therapy. Pretty quickly I gave up the cane and stopped bouncing into stuff with my car. Over a few years, the tremors have left unless I'm disregulated for some reason. When T said this was all trauma based years ago I laughed. Like how can not walking be related to early childhood neglect and abuse? It made no sense. But she was right. Being more in my body and doing the very difficult therapy has changed my being in this world.
 
My B12 is good.
Just to be certain. Good means what?

Years ago I had a nurse practitioner tell me that the ideal range for B12 is over the top of the range. The range at the time was 1000. She was right, I felt best when my B12 level was around 1250 plus.
 
Try plain KEFIR for at least 2 weeks if possible.
Read up on the GUT Brain Axis.
and Leaky Gut Syndrome theory. Neurology can change.
 
The levels are set for the average healthy person, so someone whose mind and body deal with what for a normal person would be considered excessive stress, on a daily basis.

If you wants your genes tested, do what I did. Order a test from ancestry.com or who ever is running the cheapest sale at the moment.When you get your results, look for the raw data file. Copy that into a site called promethease. it tells you everything.
 
How about Lyme disease Or poly myalgia (not sure on spelling) both can present with similar systems as to what you describe. Some theories that polymyalgia is brought on or made worse with high stress/emotions/trauma?

Hope you find comfort soo.
 
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