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  • anelsen15
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    Post count: 12

    I just wanted to update on what was found regarding earlier dialoge we had. I recently went to Mayo clinic and was diagnosed with autonomic nervous system disorder with secondary oversensitization syndrome due to it going on for a long time untreated. At this point they think it could be due to thyroid levels, I can trace everything back to neck injury for starting point and the doctor said their is possibility ( some studies) that actue spinal cord injury started this. I also have alot of mechanical issues due to favoring, spasms, etc for so long. But at least I have diagnosis to form a treatment plan and Im not crazy with all those symptoms lol. 3 years and many doctors, but pieces of puzzle are starting to make sense. Thanks for the help and just wanted to give an update.

    anelsen15
    Member
    Post count: 12

    Thats ok, I was just joking, my endo is at MD Anderson so I would assume she is one of the best.
    Yes, I am just starting on lyrica so we will see. I have a referral to John Hopkins from my neurosurgeon Ive seen in past for thoracic if the weakness continues to get worse and affects job, so I have some vacation saved for rainy day if gets there. Thanks for the time and I will update forum when we find whats going on so others might get some help in future.

    anelsen15
    Member
    Post count: 12

    Haha, yea thats been an understatement lately. Seem to live at doctors offices and no one agrees on diagnosis. Its tough just depending on doctors as no exercises I am doing do anything to lessen pain, very frustrating to feel as if you have no control. But Im gonna press on and hopefully something will click. I feel my neuro and endo are pretty good, but been two years with no diagnosis, if you know of any great ones I am willing to travel lol. My endo #1 concern is keeping thyroid medicine levels so as to prevent cells from regenerating trying to produce thyroid, but I told her I just feel like crap.
    Thanks

    anelsen15
    Member
    Post count: 12

    Thank you for your reply. I just recently had blood work and I am below the normal range for thiamine ( B1) which could have some neuro symptoms, waiting to talk to doctor about. I also do not have thyroid and the blood work showed i am hyperthyroid, i have swapped between hyper and hypo for last couple of years. It feels whole body involved , but my highest levels of pain are in spine. Its the weakness / fatigue almost instantly in all muscles when I use them that is scary. I am being tested for muscle disorder. The doctor detected periphrial neuropothy in feet with sound bar testing but the nerve conduction seemed to be ok.

    anelsen15
    Member
    Post count: 12

    Thanks for the reply.
    I have a herniated T6-7 disc impinging on spinal cord from injury long ago that does not give me much issues anymore. I have not had that checked after pool injury. I have been tested for MS, MD, RA, and several other things due to the increasing weakness both arms and legs, spacticity in legs, and alot of pain over entire spine. I have severe burning, itching and things crawling feeling in lower neck (especially right side) and the feeling of something catching when get up and down from sitting in low back, both feel very mechanical vs when disc herniation in thoracic did not restrict me in any way just high pain levels. We are repeating MRI of both since been about a year. Doctors are looking into it possibly being fibromyalgia, but some ED and incontinence ive developed has them baffled. Could there be any issue of possibly stretching the nerves of neck when kid had arm around neck and started yanking backwards with foot pushing off in my lower back?
    Im very proactive and was doing yoga, exercising , anti inflammatory natural supplements etc and I know I can rehab if I just find out whats going on but no rehab or conservative measures seem to do anything, its much different than my thoracic rehab.
    THe only thing that offers any relief is when I go to ER the injection they give offers about a half day of almost no symptoms and when I have had ESI it offers about a day. Inflammatory neurological condition is something I have heard also. 3 different doctors three different opinions on what it is. Frustrating to say the least. The only thing I can say for certain is that everything went south since pool injury.
    My next step is a muscle biopsy. Hopefully bring something to light.
    Thanks so much for this service, I am a memeber on spine health for a long time and I have passed news about this site. I hope thats ok. Its sad to see what chronic pain can do to some of the people on there . I think this is an invaluable reasource that Ive not seen anywhere else online. Thanks again

    anelsen15
    Member
    Post count: 12

    yes sir, I am sorry trying to figure out when I try to reply I always start a new thread. I will get it in right place, sorry

Viewing 6 posts - 1 through 6 (of 9 total)