Discussions By Condition: I cannot get a diagnosis.

In Need Of Help...

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: zackman
  • August 23, 2011
  • 02:18 AM

I am a 40 year old male who has had consistent reoccuring health issues for more than 9 years now. Over the past year, these issues have left me essentially disabled, unable to work and without an income. I've been labeled as a hypochondriac, lazy, and every other kind of negative term that goes along with being a reasonably young person with chronic health issues that doesn't have a diagnosis. Although a couple family members are supportive, most are not.

As I recall, this started back in 2002 after a long period of being on an antibiotic for a strange case of adult acne. I don't believe this has anything to do with my symptoms but I figured it was worth mentioning. At any rate, soon after I went off (several days) I developed an aching sensation in my lower back, followed by widespread muscle twitching and pain, severe muscle fatigue, increased GI issues (I've always had those) light headedness, agitation (mainly due to severe discomfort), mild (occasional) headaches and joint pain. These symptoms basically have waxed and waned for the better part of 10 years, although I've seen periods of improvement, things have gotten a lot worse this past year.

I've always had anxiety issues and was on a high dose of Klonopin for quite some time, I am now attemping to come off that which is clearly making things worse, but not the cause of the problem. Benzo withdrawal is nasty and I went through that last summer but I believe it to be a seperate issue that simply aggravates my exsisting symptoms.

I've been tested for Lyme a couple times, couldn't tell you what test they used but one was through my GP, one was in the ER, both were negative. I have no history of tick bites and spent most of my life in an area where Lyme is not so common. My brain MRI was normal in 2006, I've asked for another one to no avail. The most recent neuro I saw said she did not believe my conditions to be indicative of a serious neurological illness like MS. Blood tests have all come back normal, including Thyroid. EMG of arms and legs was normal in 03 and normal two weeks ago. Lumbar MRI revealed Posterior disk bulge with annular tear at the L5/S1 level, but was unremarkable considering the symptoms I'm having. Heart tests (I've had them all except for invasive procedures) have been normal.

Any input, feedback or thoughts would be appreciated!


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4 Replies:

  • Have you had any of the blood tests that would identify autoimmune diseases like lupus or rheumatoid arthritis?
    Seeking Help 12 Replies
    • August 23, 2011
    • 02:59 AM
    • 0
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  • Have you had any of the blood tests that would identify autoimmune diseases like lupus or rheumatoid arthritis? No, I don't believe so but my next move was to see a Rheumy (Doc) The most severe symptoms are the muscle pain/twitching and lightheadedness. The pain can be treated to an extent, when I can find a doctor who is willing, most are not. I'll check out arthritis and lupus, thanks much.
    zackman 2 Replies
    • August 23, 2011
    • 03:25 AM
    • 0
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  • Hi. I see that it has been a year since you posted this issue and I hope that by now you have gotten a diagnosis and are feeling better. If not you might want to take a look at the symptoms of behcets disease. Google will give you all the info you need. I was diagnosed with it 11 years ago. Many of us that live with this disease are told we are liars or hypochondriacs for a while before anyone considers this as or diagnosis. It is considered a pretty rare disease especially in the U.S. I don't believe it's as rare a disease as it's claimed to be. I believe there is just not enough knowledge out there about and so it very commonly gets misdiagnosed for various other issues. I hope this helps. I would like to hear what you think once you look it up if you wouldn't mind commenting back.
    Warrior 8 Replies Flag this Response
  • Thanks and yes, I am doing a bit better but far from well. I don't believe I have Bechet's diease as I have never noticed some of the hallmark symptoms like oral ulcerations, aside from the occasional sore in my mouth. I have never had any sores in my private areas either. Right now, it seems to be a CFS-like illness, have a low grade fever quite a bit and sore throat. I went to so many doctors in an attempt to get anwers that my insurance program put me on a restricted recepient program. I can only see one doctor, use one hospital and pharmacy. lol Nothing funny about it though, I never took advantage of any doctor and was only attempting to find a diagnosis. Usually, they put someone on that for doctor shopping or abusing medications, but I have no history of that. I guess if you run up too high of a bill, medicade doesn't like it and puts a leash on you.
    zackman 2 Replies Flag this Response
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