Discussions By Condition: I cannot get a diagnosis.

3.5 years and doctors think it's in my head.

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Mouse1027
  • May 28, 2008
  • 06:05 AM

Ok so 3.5 years ago after 13 years of severe indometriosis and ovarian cysts and 11 laparoscopies I was diagnosed with cervical cancer and had to have a complete hysterectomy. I was 28 at the time. I dont have any children, the indo made it impossible to get pregnant.Well shortly after my hysterectomy I started getting a numbness in my feet and legs, then that turned to pins and needles in my legs and lower back and feet. Eventually within a month or so that changed to very severe pain that started in the lower right leg and would come and go but when it reappeared it included a whole new area in the leg. 3.5 years later and the pain has spread from my right leg to my left leg, lower and middle back, and my right arm. The worst pain is in my lower back and right leg, making it difficuilt to walk far at all. It feels like an infected absessed tooth but in the leg. Dont know if that makes sense to anyone but that is the best analogy I have. I have had bone scans, blood work, MRI after MRI, seen neurologists, and Rheumotologists, and they say Im fine. Yet I am always exhausted, just taking a shower and getting dressed wears me out. I have headaches all the time, and pain all the time, There are days when I cant walk hardly at all and I am losing strength in my arms and legs. I have tested negative for arthritis and Lupus and MS. I have no idea what is wrong I just know its not going away and its spreading to other areas. I also have chronic bloatedness and constipation. So if anyone has any ideas or has had anything similar please feel free to comment. I am just about to give up on finding an answer. The pain I can live with, its the not knowing what causes it that is so hard to accept. Pain like this can not be caused by nothing! I just dont know. Thanks for listening to me. Take care.:o

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9 Replies:

  • Kind of sounds like in the beginning that there was nerve damage from the operation or anesthesia. Of course it's not in your head. Try to find a decent Internist, probably a woman, who is sympathetic and understanding. Did you ever have any rashes anywhere before all of this?
    Monsterlove 2,921 Replies Flag this Response
  • Yes, I had rashes on my chest and my arms. Bright red and scabby, they would just appear and then eventually after putting something cold on them they would fade away.They would come and go, and still do .
    Mouse1027 4 Replies Flag this Response
  • It sounds similar to things that have happened to my husband over the last year and we just got a diagnosis. He has what is called Multiple System Atrophy. Look it up and see what you think. All I can tell you if you think it sounds right at scans and MRI's won't show anything. What finally helped my husband was a PET (Positron Emission Tomography), VEP (Visual Evoked Potential), Valsalva Test, ABR (Auditory Brain Scan), and an ENG (Electronystagmography).Let me tell you the doctors were telling him the same thing and we had one tell him he could heal himself. It makes me so mad that when they don't know what is wrong with someone that is the first thing they tell you.
    girl_smiley 1 Replies Flag this Response
  • Thanks to all who have responded. I dont think it's lyme disease because Im not around ticks at all and no mosquito bites either. I also read about the MSA and I must say that had alot of familiar symptoms. I did not mention that I developed trouble breathing because the doctors told me I had developed a slight case of asthma.I do have instances where I feel like the air is being sucked out of the room and I cant get enough, I also get heart palpatations ever so often, like my heart will flutter for a couple of minutes. Very uncomfortable feeling. I do get dizzy when I stand and I wake with headaches often. I also get pins and needles all over and numbness in my finger tips and hands. My vision is constantly changing, 3 prescription changes in 2 years. I constantly have blood in my nose every morning when I wake up, and very recently for the past month or so have heavy excess mucus in my throat, I had to sleep on my side for awhile because I would take in a breath while I was sleeping and end up coughing all this crap that was built up in my throat. Right now I would say the worst thing is the pain my right leg when I walk and the pain that has gone from my lower to back to my whole back. It hurts to sit, stand, anything! I know I sound like a wreck but man, I just want to know why its all happening and why so soon after my complete hysterectomy. I have been told its neurological but what the heck does that mean? How do I get the doctors to take me seriously? They look at me like Im nuts and they describe antidepresents *which I dont take* I am not depressed just frusterated. Thank you again for reading my posts. I encourage anyone to answer them who has any idea. Thanks;)
    Mouse1027 4 Replies Flag this Response
  • Hi, I think you should considere lyme disease very seriously. I have it, and don't remember a tick.Lyme disease is an infectious that attacks all your system, that's why you have so many symptoms that seems to not be reliate, but it is!!!I also have problem breathing cause of lyme, all your symptoms, and im sure you have it cause of all your different symptoms...Vision problems is a serious problem cause by a chronic lyme not diagnosticed. Please, go see the symptoms ok, and go see lymenet, they will refer you to a lyme specialist, they will give you the good tests and answers, and one day you'll be good, this is the good news! Do you prefer to stay like this all your life?I just say about lyme when im sure, and i am. I did all the possibles doctors before knowing it, and i'm going to be ok one day, just with antiobiotics.A movie is coming soon:http://www.openeyepictures.com/underourskin/uos_background.html click view trailer"It's not in your head, it's in your skin!!!(little joke)Fannie
    Fannou 111 Replies Flag this Response
  • lol, cute joke. Well I saw a rheumotologist and I was tested for Lupus and Lyme disease. I don't have it. I will get a second opinion though to be sure:D
    Mouse1027 4 Replies Flag this Response
  • Yet I am always exhausted, just taking a shower and getting dressed wears me out. I have headaches all the time, and pain all the time, There are days when I cant walk hardly at all I dont know if it's this or not but it could be something like chronic fatigue syndrome?? esp since you have so many different problems going on. http://wwcoco.com/cfids/bernesx.html
    taniaaust1 2,267 Replies Flag this Response
  • i could me RSD(reflex sympathetic dystrophy) i hav expirence the same symoptoms as you except in my right hand.
    casino00 1 Replies Flag this Response
  • Dear Mouse1027,It's NOT in your head.When you finally run out of medical option, please send me a private message. I will help you.
    poodlesamy 26 Replies Flag this Response
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