Discussions By Condition: I cannot get a diagnosis.

Lots of crazy symptoms, please help :(

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Skinnyluigi
  • October 29, 2008
  • 03:35 AM

Hello everyone. I really would like to gather some opinions on what I`m going through now.

This is not my first post here, but my previous one was long long ago (maybe even 2 years ago).

I`ve been dealing with an ongoing set of strange symptoms that have been developing/progressing/persisting for over two years now.
After much frustration, self research, and many doctor visits, this is still a problem continuing to negatively affect my life nearly every day. I was posting hoping some one might be able to offer some insight, or advice, or even a similar experience, because I've been unable to get any particular help out of any doctor visit, and I'm really starting to think everyone just thinks I'm crazy. I's obviously really starting to have a mental effect on me as well, which is also obviously not good.. Everytime I think I can live with all my strange problems and finally forget about it and relax, another strange symptom happens and I get scared again. I really feel like I'm just waiting to die, or waiting for a doctor to tell me what it is I have when its too late.

First about me:

I'm a 24 year old male, 150 pounds, 5'11, fairly tall, skinny, not entirely out of shape despite little exercise other than walking / stretching (bad, I know)
Eat generally well (good mix of diet, takes vitamins, eats lots of fish, relatively little junk food, eat Japanese food)
Medium-poor sleeping habits, working a lot
Living in Eastern Canada, moving a lot (lived in Japan, and am currently there now, lived in Western Canada as well)
Not a lot of stress in my life
Known allergies: penacillin (spelling?)
Never had surgery, never had any major chronic illness
Diseases in family: Diabetes and arthritis on father's side

Here's a list of every symptom I can think of that I have:

-Numbness and strange sensations across my entire body. Typically numbness happens in my arms and fingers, my face, the end of my nose, the top of my head, my lips, and my legs. My strange sensations are difficult to explain, but its similar to the feeling when you hit your funny bone really hard, and its as if I have funny bones all over my body; this sensative happens often in my arms, legs, and feet. Additionally, sometimes, I feel like there are ants crawling all over certain parts of my body, or as though I am being hit by rain (when really my arms/legs etc are not in contact with anything).

-My body has become very VERY snappy. Almost every joint (tendon? something?) in my entire body is extremely cracky and makes a cracking noise at even the slightest movement. I can feel my muscles gliding around and snapping over each other in multiple spots. This is particularily true of my left shoulder, and the joints connecting my pelvis bone to my legs. This was never painful before, but is getting progressively worse and is becoming quite painful. Recently, I can feel the physical movement of my muscles (tendons? something, anyway) in my lower back and around my left lung. It feels like everything is loosening up or disconnecting. Sometimes moving around makes my insides feel really aweful... its as if all my insides are caving in or something... The tendons (or muscles or whatever is there) between my two shoulders feel very tight and painful often. When I stand up from a sitting position, it feels as if the bones in my lower back snap back into place after having shifted out of place. This is the one symptom that I can actually show people because the noise is very obvious, and if I have someone feel my muscles when I move them, they can also feel the snapping and scraping inside.

-I don't feel well often. I am often very fatigued and sometimes am unable to complete an entire day of work without becoming exhausted. I just feel sick and strange.

-When I lift my arm up above my head, the tendons in my arm snap loudly and become sore.

-My eyes are also strange. They become blurry a lot and sore. I have a sharp pain jutting from my right eye to the back of my head sometimes.
-Migrane headaches

-Pain around my left lung/heart (happens fairly often...) I have been told "pleurisy" is likely. But have been told multiple times..

-These symptoms seem to come in full and really hit me sometimes, then go away for a few days. This on-off cycle has been continuing for a long time, but recently (this past month) I have just felt terrible continuously.

Things I DON'T have:
-irregularities in blood (I believe... still waiting on a blood test, the first in a long time)
-any swelling of any sort
-nausea
-memory loss
-sensitivity to cold / heat
-heart problems
-rheumatoid factor and any signs that could point to rheumatoid arthrytis in my blood

Sorry for the long post everyone, but this is something that`s seriously driving me nuts... its almost enough to lead me to depression. Like I know I`m not actually depressed, and my social life is still great, but I`m worried I`m not going to live very long.. It`s hard to have serious goals in my life and i don`t know what to think or do somethings. This problem is on my mind constantly all the time every day of my life now..

History with doctors:

The pain in my chest around my heart was the first thing that happened. I of course was very concerned because of the proximity to my heart, so I went to the hospital and had X-rays and blood tests done. Each time they told me that there was nothing wrong. They thought maybe "pleurisy".
Following this was the muscle cracking. I've gone to the doctor countless times and had many X-rays of bones and chest X-rays.. There is never any result. Always, everything is perfect.
I've had many extensive blood tests. Everything is perfect. No rheumatoid factor, no diabetes, no anything. I've had an ultrasound of my stomach-abominal area - nothing. I don`t believe that muscle tissue appears on X-rays with bones, so maybe the X-rays coming out okay actually don`t mean anything.

I have done a considerable amount of my own research.
What does everything think of the following conditions:

1. Lupus (have been told by my doctor it is very unlikely. I certainly don`t disbelieve him, but I`m not sure why)
2. Rheumatoid arthritis (no rheumatoid factor in my blood, so it has been ruled out apparently)
3. Fibromyalgia (This seems entirely likely to me)
4. Multiple sclerosis (Have been told by my neurologist that I don`t have MS. That`s a relief)
5. Myofasical pain syndrome (not sure about this one)
6. Connective tissue Disease (This one is not impossible I think, but I don`t have the classic swollen fingers, so I'm not sure)
7. Some kind of muscle atrophy (I haven`t lost any weight at all, so I'm not sure about this one)

Since my muscles and nerves are both affected, I assume it must be some sort of neuromuscular disorder? Its just that I'm having difficulty finding a disease/disorder with the nerve symptoms AND physical symptoms, and I've never met anyone with the same symptoms as me. Would I be correct to say that fibromyalgia typically does not cause physical problems? (loudly snapping joints, muscles scraping around)

I really have no idea. Can anyone offer me any help?? Any advice/help/anything, no matter how little would be great.

I apologize for the long post, but I really am concerned about this and it is progressively getting worse. I intend to discuss this with my doctor yet again when my blood test results come back (regardless of the result), but I don't know what I'll say this time other than the same things I've said before.

Thank you to anyone and everyone for any comments everyone!

Best wishes,

--Matt

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1 Replies:

  • Has anyone mentioned Marfan Syndrome? Try here: http://www.americanheart.org/presenter.jhtml?identifier=4672
    aquila 1263 Replies
    • October 30, 2008
    • 05:40 PM
    • 0
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