Discussions By Condition: I cannot get a diagnosis.

Can't seem to get anyone to give me a Straight Diagnosis =(

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: LegacyWeapon
  • April 17, 2009
  • 09:29 AM

Basically, I've had some issues since I was about 8.
Started with chronic headaches around that time.
Progressively, chronic fatigue, sinus pressure, joint/muscle pain/swelling, photosensitivity have also joined that list until I was 16, then the symptoms just stayed normal, and nothing else new has really surfaced.

I've had my eyes checked, no issues.
Blood, No issues.
Neurologist says no issues.
Sinus Doctor says no issues.

Closest I've gotten to anything was when a Neuro told me I might have Lupus, but, they threw that out the window, because my ANA wasn't consistantly positive (Came up Positive in 50% of tests).
So, basically, I've gotten pretty used to the symptoms, they've seemed to be getting a little worse over the last 6 months though...mainly the fatigue.

So, although I have a gigantic medical file, I have no diagnosis.
If anyone wants to give me any input, I'd greatly appreciate it.
Thanks =)

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4 Replies:

  • IF you get more symptoms you may want to check out chronic fatigue syndrome.. thou that dont usually cause joint swelling (but can cause swelling.. ive had my toes and my whole hand swell up with it at times).. Your other symptoms are well known CFS ones including the photosensitivity. If you do have CFS.. being a child you have a better chance of recovery than an adult.
    taniaaust1 2267 Replies Flag this Response
  • Eh, I'm 21, so, not exactly a child =P But I'll look into CFS.My Rhuematologists have both told me it's not likely though. Who exactly would I goto for CFS?
    LegacyWeapon 1 Replies Flag this Response
  • It sounds like Chronic Fatigue Immune deficiency syndrome (CFIDS) the cause is still unknown, although some physicians believe Epstein Barr virus causes it. However many people carry this virus & have no symptoms. The joint pain may be fibromyalgia (trigger point pains all over different areas of the body) I do not think Fibromyalgia causes swelling. Maybe a rare type of arthritis. Good luck hope this helps
    Carrlexzi 36 Replies Flag this Response
  • Eh, I'm 21, so, not exactly a child =P But I'll look into CFS.My Rhuematologists have both told me it's not likely though. Who exactly would I goto for CFS? oh sorry i thought you were a teen. As I said, your symptoms dont quite point to that it may be CFS, or rather I mean they point that way but not clearly enough for me to say currently that probably and maybe your issue ... currently your case dont quite seem bad enough, but if you get worst. You really should check that possiblity out as then I'd say it was likely. Even a CFS/ME specialist due to you not having enough symptoms probably would find you currently hard to diagnose, (as currently it has to be diagnosed on symptoms, thou the medical field is currently working on diagnostic blood test for this and it's been said a test should be out within 2 yrs). Hence right now, unless you get worst or proper blood tests etc come out for this, it may be a waste of time following that possiblity up. If you still want to follow up possible CFS... you need to see a doctor or specialist (found in all kinds of medical fields due to CFS having so many different kinds of symptoms) who specialises in CFS. (With your case not being clear cut with this.. I wouldnt trust any GP to give you that diagnoses unless he specialises in this field). (You may find the names of some doctors who specialise in this illness by contacting your countries or regions local CFS/ME/CFIDS support groups and asking them) I dont know if you are close to the following.. but if you are and it's tests are accessable to you, this would probably be a good option for diagnoses if you do have a very mild case of CFS as if anyone can diagnose mild cases.. it probably would be this institute. . http://www.youtube.com/watch?v=TRtxMYI-zKg (as they are top of this field and apparently doing free?? testing they say).
    taniaaust1 2267 Replies Flag this Response
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