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Don't know who to see or what to do

mtsemijrmmtsemijr Posts: 2
edited 02/15/2015 - 5:24 AM in Upper Back Pain, Thoracic
Sorry if this seems too long, this is my first post on anything ever.

I am a 32 year old male. I have been to see my primary care physician, and 2 neurologists. Each has given me different answers and I do not know what to do or who to see. I'm hoping after hearing my situation someone on here will have a recommendation on what I should do.

About a year ago I started to randomly have a severe pain between my right shoulder blade and spine. When I say severe, I mean feel it tighten up and then it feels like a knife or poker is driven into my back. Enough so that I can't do anything at all and it takes my breath away. I saw no connection in anything that would cause it.

Then in August last year I was getting a feeling mainly in my right leg. it was a constant aching type feeling (similar to if your arm fell asleep and was waking back up) not a numb or pins and needles. It is really hard for me to explain. Then the random pinching pain started above my knee, inside of my thigh, in back of my thigh right where it connects to my rear, in front of my ankle and under my foot. I went to bring my kids to laser tag and that night I woke up in extreme pain in my lower back and my right leg. From then on I have had a weakness in my legs that feels like it take so much more just to do normal stuff. After doing anything walking, standing it got worse and worse. On top of that I am getting on and off pinching pain in all the spots I was getting that odd feeling. Eventually my right leg gave out on me(only happened once) and I fell to the ground. I went to the er they told me i pulled a muscle and gave me some muscle relaxers and a shot of torridol which did nothing and the problem never went away. So I made an appointment with my PCP and he said he thought the problem spinal stenosis. He scheduled an mrI (lumbar) prescribed me tramadol and a sent me to a neurologist. After the mri(lumbar) I saw a neurologist who prescribed gabapentin, a spinal tap, and more mri's. I had issues with the gabapentin so after the mri's (thoracic and brain) I was taken off the gabapentin and put on amitriptyline to sleep through the night, and lyrica. That neurologist said transverse myelitis (that didn't show on mri) was the culprit and I would eventually get better. I could try a week of iv steroids to see if it helped. I did the steroids amd it seemed to help a little but not really. Soon after it was worse then before. My family and I were concerned there was more. So I asked to get a referral to another neurologist. That neurologist took a cervical mri. He then told me all the tests done were had normal results and he thought fibromyalgia was the problem. Now to be clear throughout all these months of testing. The weakness and random pinching pain has been getting worse and worse and now has spread.

Today I constantly have the odd feeling behind my arms, in both legs and lower back. Random pinching pains in all those areas mainly above the knee, inside thigh and where it connects to my rear, tailbone, in front of ankle and behind my Upper arm. With a weakness in my arms and legs that isn't too bad if I do nothing. But if I do anything too long the weakness and pain gets worse. This includes sitting, laying down. I feel like I can't even do nothing. Even driving causes my pain to worsen after a while. And even playing video games with my kids causes the pain in my arms and legs to flare up. My back where I got those random severe pains is always really tight, and I get the severe take my breath away pain more often. The meds don't seem to help and I don't know what to do anymore.

My work has been really good about the situation this whole time. But I am now on the verge of losing my job and scholarship to college (my employer is paying for my manufacturing engineering courses). I can't do anything without pain and constantly taking breaks.

I am currently prescribed to tramadol, lyrica, amitriptyline, zoloft. I am going to see another rheumatologist and neurologist by recommendation of my PCP. But I was hoping someone may have a good recommendation on somewhere in the new england area or close to it that is known to be good to get some straight answers. Or if anyone had any ideas on my situation at all and what I should do. Any feedback or help would be so greatly appreciated.


  • LizLiz Posts: 7,832
    Welcome to Spine-Health

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    What evidence did the neuro give for transverse myelitis to say that was diagnosis? What evidence did other neuro give for fibromyalgia diagnosis? There is criteria that should be met and you want to know because if the diagnosis came just because they cannot find reason then it may be time to get to a larger teaching hospital. If the doctor can honestly say you have exhausted all testing not just testing they are trained in or familiar with then a fibro diagnosis is much easier to feel secure in , but If that has not taken place than keep looking especially if your symptoms are progressing. You may very well have fibro but there are a lot of tests the top doctors do that others may not. The things that can mimic fibro is overwhelming and long. Many people were diagnosed with fibro only to find out it was something else or a combination later down the line, it's your quality of life you are fighting for. I am one of these people that ultimately went to a teaching hospital and had that testing and the reasons for pain and neuro problems were found. 90 percent of the many doctors ( some heads of neurology ) I have seen are not familiar with what the teaching hospital found or if they are they have not treated another patient with it and they could not find issue. I had all the testing you listed above and much more . The brain MRI and spinal tap were for MS if I am guessing, did they detect weakness and this is why they did test?
    That's pretty impressive to have all that going on and work and still work towards engineering degree to. Don't give up the answer is out there
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thank you for the advice.

    I was not shown any type of proof for any of their findings. And it felt as if I was just being blown off after a while. They did find weakness and the brain mri was for ms. But I wasn't getting any straight answers from anyone. And when I did get a straight answer I wasn't shown any proof to support it, and I felt like I was being blown off. That's why I started looking for advice.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Well in my case some of the weakness ( true weakness neurologically) was reason for my MS tests and one reason suspected something neurologically happening.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • So many medication to take. You may also try simple exercises to support your medication. There are also some remedies that fight inflammation such as ginger and apple juice. Better to go to doctors with several years of experience.
    PAIN can CHANGE you, but NEVER let it DEFINE you.
    Treat arthritis pain
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