Discussions By Condition: I cannot get a diagnosis.

So confused. Please help?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • March 25, 2008
  • 11:56 PM

Ok, I think I might have posted before but I don't recall and if so I can't find it anyway.

I'm an 18 year old female, somewhat overweight but not like really heavy, average height. My problems started when I was seven and they've been progressively getting worse and new symptoms appear now and then but it's hard to say with any certainty when anything actually began. My symptoms also remit and relapse, coming and going with no rhyme or reason. I never am completely better, I always walk slowly and fatigue easily, but I can usually walk.

I usually use a pair of forearm crutches to walk; they reduce the fatigue and help me to walk more quickly. Sometimes I walk on my own, when I'm feeling really good. Sometimes I can't walk at all and I'm in a wheelchair. On the worst days I'm in a wheelchair and my arms get too fatigued to propel myself. I have poor balance and coördination and tend to "miss" when I go to reach for things. I fall down a lot. I have trouble remaining in a sitting position if my back is unsupported, especially if I'm not in a chairlike position (ie, with my legs dangling off something).

I don't know if it's related, but I also get terrible tingling sensations in both hands and feet, like they're falling asleep. This happens even when I'm standing straight or laying down and there's nothing I can do but wait it out.

My muscles are atrophied, but the doctors do not know why. My legs are much worse than my upper body.

Again possibly irrelavent, but my senses are also somewhat dulled. I wear glasses because I'm incredibly nearsighted, I wear a hearing aide because I have severe hearing loss, and although there's no way to test the other senses that I know of, I'm sure they're dulled because people always smell things that I cannot, and I spice my foods to levels most people don't believe just because otherwise I can't taste it. My eyes are very slow to focus when I look at something, so I cannot drive.

I have constant pain, sometimes better and sometimes worse, but always there. It focuses in the hands, feet, leg muscles, back, and neck, but it's not uncommon for everything else to hurt as well. The only medicine I'm on is diclofenac, which lessens the pain just enough to allow me to walk and move about, but it still hurts. They had me on Percoset for a while and it did not help.

I'm really at my wit's end. All the tests they've done are coming up negative. My MRI was clean, as was my CAT scan. Any suggestions?

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3 Replies:

  • Ok, I think I might have posted before but I don't recall and if so I can't find it anyway. I'm an 18 year old female, somewhat overweight but not like really heavy, average height. My problems started when I was seven and they've been progressively getting worse and new symptoms appear now and then but it's hard to say with any certainty when anything actually began. My symptoms also remit and relapse, coming and going with no rhyme or reason. I never am completely better, I always walk slowly and fatigue easily, but I can usually walk. I usually use a pair of forearm crutches to walk; they reduce the fatigue and help me to walk more quickly. Sometimes I walk on my own, when I'm feeling really good. Sometimes I can't walk at all and I'm in a wheelchair. On the worst days I'm in a wheelchair and my arms get too fatigued to propel myself. I have poor balance and coördination and tend to "miss" when I go to reach for things. I fall down a lot. I have trouble remaining in a sitting position if my back is unsupported, especially if I'm not in a chairlike position (ie, with my legs dangling off something). I don't know if it's related, but I also get terrible tingling sensations in both hands and feet, like they're falling asleep. This happens even when I'm standing straight or laying down and there's nothing I can do but wait it out. My muscles are atrophied, but the doctors do not know why. My legs are much worse than my upper body. Again possibly irrelavent, but my senses are also somewhat dulled. I wear glasses because I'm incredibly nearsighted, I wear a hearing aide because I have severe hearing loss, and although there's no way to test the other senses that I know of, I'm sure they're dulled because people always smell things that I cannot, and I spice my foods to levels most people don't believe just because otherwise I can't taste it. My eyes are very slow to focus when I look at something, so I cannot drive. I have constant pain, sometimes better and sometimes worse, but always there. It focuses in the hands, feet, leg muscles, back, and neck, but it's not uncommon for everything else to hurt as well. The only medicine I'm on is diclofenac, which lessens the pain just enough to allow me to walk and move about, but it still hurts. They had me on Percoset for a while and it did not help. I'm really at my wit's end. All the tests they've done are coming up negative. My MRI was clean, as was my CAT scan. Any suggestions?The suggestion I have for every strange list of symptoms I come across is B12. Have you ever had your B12 level checked? I had a deficiency and it was left untreated so long that it resulted in nerve damage. The reason B12 popped in my head (aside from my own trouble) is because some of the main symptoms of a B12 deficiency are extreme fatigue, loss of balance and coordination, numbness and tingling in the arms/legs/face, and muscle pains and aches (my neck especially). I have damage to my eyes from the deficiency and bright light bothers me, I can't focus (blurred vision), I can't adjust when going from light to dark (or vice-versa) and I see spots and lines all the time. I was put off work in November and stopped driving around the same time. I was put on B12 injections but the type I was given wasn't the right kind to make a difference. Since finding out that it's all B12 related, I'm starting to think I've been B12 deficient all my life - it explains a lot of problems I've had (I'm 30). I also had a ton of tests with perfect results. Since starting a new kind of B12, most of my symptoms are starting to go, after all this time.I would strongly suggest that you have your B12 level checked (if you haven't already) and don't take your doctor's word for it that it's okay, do your own research. Visit the "B12 deficiency is commonly misdiagnosed" thread in this forum (you will see a ton of my posts there :) ) and you'll be surprised by how much your symptoms reflect a B12 deficiency. Even better, copy and paste your message into that thread and you'll get some great responses from people who've been there (two in particular) and who have also been to the wheelchair point.~Jayne
    sweeticeblue 352 Replies Flag this Response
  • Ok, I think I might have posted before but I don't recall and if so I can't find it anyway. I'm an 18 year old female, somewhat overweight but not like really heavy, average height. My problems started when I was seven and they've been progressively getting worse and new symptoms appear now and then but it's hard to say with any certainty when anything actually began. My symptoms also remit and relapse, coming and going with no rhyme or reason. I never am completely better, I always walk slowly and fatigue easily, but I can usually walk. I usually use a pair of forearm crutches to walk; they reduce the fatigue and help me to walk more quickly. Sometimes I walk on my own, when I'm feeling really good. Sometimes I can't walk at all and I'm in a wheelchair. On the worst days I'm in a wheelchair and my arms get too fatigued to propel myself. I have poor balance and coördination and tend to "miss" when I go to reach for things. I fall down a lot. I have trouble remaining in a sitting position if my back is unsupported, especially if I'm not in a chairlike position (ie, with my legs dangling off something). I don't know if it's related, but I also get terrible tingling sensations in both hands and feet, like they're falling asleep. This happens even when I'm standing straight or laying down and there's nothing I can do but wait it out. My muscles are atrophied, but the doctors do not know why. My legs are much worse than my upper body. Again possibly irrelavent, but my senses are also somewhat dulled. I wear glasses because I'm incredibly nearsighted, I wear a hearing aide because I have severe hearing loss, and although there's no way to test the other senses that I know of, I'm sure they're dulled because people always smell things that I cannot, and I spice my foods to levels most people don't believe just because otherwise I can't taste it. My eyes are very slow to focus when I look at something, so I cannot drive. I have constant pain, sometimes better and sometimes worse, but always there. It focuses in the hands, feet, leg muscles, back, and neck, but it's not uncommon for everything else to hurt as well. The only medicine I'm on is diclofenac, which lessens the pain just enough to allow me to walk and move about, but it still hurts. They had me on Percoset for a while and it did not help. I'm really at my wit's end. All the tests they've done are coming up negative. My MRI was clean, as was my CAT scan. Any suggestions? Hi, sorry ur feeling so unwell, I cant help u with what is wrong but i want to reccomend something that would help with ur aches & pains in bones & joints.......my Pain Consultant told me to try them & they have definately helped me......Glucosamine Sulphate tablets.....they are a natural remedy. I also take Cod liver oil capsuals......also helpful if u can take them ! Hope u feel better soon :) !
    Tootsie 628 Replies Flag this Response
  • Do get checked out also for Porphyria because you have constant severe pain and the cat scans don't correlate with your pain whatsoever.;)
    TaylorDeelwithit 382 Replies Flag this Response
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