Discussions By Condition: I cannot get a diagnosis.

Hi, I'm roker and I've been sick for over 2 years . . .

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • May 23, 2007
  • 07:08 AM

with no real diagnosis, I'm a 28 year-old Male from Michigan

I guess I should list the tests I've had:

MRI head, neck, and TMJ

spinal tap

blood work includes thyroid

bone scans of shoulder

Problems I've have:

TMJ right side mostly

shooting pains, right side from the jaw, to my neck, sometimes traveling to my right shoulder

muscle spasms in my shoulders, neck, tmj, upper and lower back, the one in my neck and shoulders have been there for 2 years now

I have low hormone levels and have prescribed hormone shots to raise them to better levels

I have small muscle "flutters" or tremors, but they are mild and seem to happen when randomly at random areas (forearm, tricep, my right eyelid, legs, the jaw where my TMJ is most prevalent)

I have some hand pain, mostly in the right hand, but some one the left

I have mild scoliosis, my body seems to lean to the right

a lot of my joints pop and click: neck, fingers, wrist, shoulders (those are painful), ankle, knees, hips

muscle atrophy in my right shoulder, but it has been built back up for the most part thanks to proper physical therapy

My SI joint is off cue (probably from the scoliosis)

Medications:

Naproxen
Hormone shots
occasional vicoden

diagnosis:

low hormone
TMJ
mild scoliosis
SI joint offbalance

Treatment so far:

chiropractor visits (once a month tops)
physical therapy (on and off for the last 2 years)
bite splint for my TMJ
and the medications listed above had one time involved anti-depressants,
botox shot (once) in the offending right shoulder where the majority of my spasms occur


What I really want:

a proper diagnosis and a good doctor that'll help me find it

I've been to neurologist (2), rheumatologist, rehabilitation doctor (good doctor helped me get some answers, but left me without a true answer),
TMJ specialist (helped me get this nifty bite splint), and an endocrinologist (found the low hormone levels, but found nothing wrong with my thryoid after a TSH test)


where do I go from here? I don't think I've gotten worse, it's just more of the same. The muscle tremors are mild bordering on infrequent to semi-frequent. I just want a proper diagnosis so I can feel like I did before this all happened, which do so randomly.

I keep in good spirits and I try not to let this bother me. My mental well-being is good and I have a semi-normal life of work and extra circular activities. I'm moving to a new city this year and I'm still trying to attain my dreams. Sometimes I feel like I was robbed of my last two years, but I continue to move on and hope for a better tomorrow.

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8 Replies:

  • Roker...look into symptoms of Chronic Fatigue Syndrome/ME I'm not saying this is it...but symptoms sound very similar Best to you and keep your chin up...sounds like you're doing a good job of not letting this get you down...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Hi Roker!I know what you are going through. I too am suffering some mystery illness. One of the main complaints that began prior to the worsening of my symptoms were the TMJ and pain radiating down the right side of my neck and jaw. I think TMJ can do this. I would try to ignore and go on.I as well have the scoliosis and oddly, my joints pop all the time, especially hip, ankle, wrist, shoulder. I am 29 and have had a slue of other symptoms. A lot of neurological pains . ALso scoliosis.I hope that you are successful in finding a reason for what is going on. It seems that there are not enough doctors who actually can deal with unseen symptoms. I realize that they must only seem to understand if you are showing signs of a common illness. Keep your spirits up and continue to go on with your life. I have concluded that until we get answers we must be thankful that it tis not anything worse than what we do have! It's not cancer or a death sentance. All we can do is make the most of our life. Good luck!
    Anonymous 42789 Replies Flag this Response
  • Hi Roker!I know what you are going through. I too am suffering some mystery illness. One of the main complaints that began prior to the worsening of my symptoms were the TMJ and pain radiating down the right side of my neck and jaw. I think TMJ can do this. I would try to ignore and go on.I as well have the scoliosis and oddly, my joints pop all the time, especially hip, ankle, wrist, shoulder. I am 29 and have had a slue of other symptoms. A lot of neurological pains . ALso scoliosis.I hope that you are successful in finding a reason for what is going on. It seems that there are not enough doctors who actually can deal with unseen symptoms. I realize that they must only seem to understand if you are showing signs of a common illness. Keep your spirits up and continue to go on with your life. I have concluded that until we get answers we must be thankful that it tis not anything worse than what we do have! It's not cancer or a death sentance. All we can do is make the most of our life. Good luck!thanks for the responseI was hoping you'd register so I could keep tabs on you and you could keep tabs on me as wellyou should see an endocrinologist and make sure your thyroid and hormone levels are adequate
    Anonymous 42789 Replies Flag this Response
  • is there any reason why the moderator has to approve of every post I make?
    Anonymous 42789 Replies Flag this Response
  • wellmy spams/twitches are getting worse and worse everydaycould this possibly be some kind of vitamin deficiency?
    Anonymous 42789 Replies Flag this Response
  • Roker...look into symptoms of Chronic Fatigue Syndrome/ME I'm not saying this is it...but symptoms sound very similar Best to you and keep your chin up...sounds like you're doing a good job of not letting this get you down...mommy catHey mommy cat! Hi again! Have you seen the recent article online about Dermatomyositis? It's finally in the news.
    Anonymous 42789 Replies Flag this Response
  • Hey mommy cat! Hi again! Have you seen the recent article online about Dermatomyositis? It's finally in the news.this thread is oldyou could always send a private messageand I'd appreciate some input.
    Anonymous 42789 Replies Flag this Response
  • I am sorry, but it sounds to me like you have been diagnosed, and your diagnosis seems to fit with your symptoms. I don't know anything about Scoliosis, but I have TMJ and know that that is a horribly painful thing at times, especially when you are stressed and you clench your jaw. I get pain all the way down to my shoulders just from that sometimes. I need to get a splint like you have. I am sorry that you have these problems, but your docs are giving you pain management and treating what they can, I think. Now you just have to learn to buck up, as you can read from alot of the people on this site, it can always be worse. Good luck. And I don't know if you have read around, but mommy cat is the resident expert on Chronic Fatigue Syndrome. She can diagnose anyone on this site with it!!
    Anonymous 42789 Replies Flag this Response
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