Discussions By Condition: I cannot get a diagnosis.

Does anyone know what's wrong with me?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Jackie1015
  • February 24, 2012
  • 10:33 PM

Where to start with my story? My problem has been going on for about 7 years now and am reaching the point of desperation. I am a single mother of two wonderful children and they need me to be well for them.
My problems seemed to start just out of the blue really. I was home schooling my kids, working, and going to college (and being on the Dean's List) all at the same time. I am a person who like to do things and keep busy or else I am not happy. I was also in a relationship with a guy who got abusive and I left him. Life was great, my kids were happy, and I was bettering myself so I could do more for my kids. One day I was out on the trampoline with my kids (our daily play time together) and all of a sudden my legs got heavy and could barely pick my legs up. I was startled by this because it had never happened before. I have always been fit and active and never had this happen.
The days went by and my leg problem didn't get better. Soon pain started in my legs and I was so tired. I suddenly needed to take naps and soon 3 or 4 naps a day and the heavyness and pain in my legs spread to my arms and back. My muscles were so sore all the time. I finally went to a doctor who tested my thyroid, iron levels, and white cell count. She also checked to see if I had Mono. All the tests came back fine except my white cells were elevated and I had apparently had mono in the past (which I don't remember having). She said it was probably a flu bug and it shoud pass!
Well it didn't pass. It all got worse and then some more things started happening. My periods became really frequent. I have 3 to 4 a month now. I also started losing weight for no reason. I used to have DD breast size and now am smaller than an A cup. I also started having problems with my dexterity and memory and just basic mental sharpness. I went back to the doctor again and she rechecked my iron levels and thyroid and all was fine...even with all my periods I have never been anemic. She said she didn't know what was wrong and should consider seeing a therapist!
I really didn't care for her remark about the therapist thing...like this is all in my head?! So I went to another doctor who ran the same tests the previous doctor ran with the same results and a shoulder shrug. I went to 3 other doctors after that with the same tests and same shoulder shrugs. This was all happening, on top of everything else I was trying to accomplish, the first year of when the troubles started. I was determined to find out what was wrong with me and even more determined not to let this illness take me down. I fought all this physical pain and pushed myself which only made the wide spread body pain worse.
I need to shorten this story a little...I have all the same problems I listed before including new ones. My eyes are starting to dim...no other way to explain that, I have to pee every 30 minutes, the pain has now gone to my joints and the bottom of my feet burn and keep me awake at night. I have bone loss in my neck and jaw (confirmed by two chiropractors, 2 dentists, and 1 maxilofacial surgeon), my kids can't even hug me because it hurts my muscles, I can't sit or stand for very long, and have significant muscle loss and severe muscle weakness. I had to quit college, still home schooling my kids with great effort, and have been unable to work at a job for the last 3 years. I am lucky to have great family and friends who help me with money but it has been VERY depressing losing the independence I once had. I can't even go grocery shopping without having the big physical consequences. I don't know how much pain I can take and it has gotten worse over time, not better. I have been to see other doctors who have tried me on different meds--4 different birthcontroll pills (all of which I was allergic to), a med for MS (which did nothing for me), Lyrica and Cymbalta (allergic to both of those too), vitamins, and other alternative type meds.....and nothing has worked.
My newest problems have made themselves known in the last few months and these are muscle spasms and tremors. The kids tell me when they hold my hand or touch me anywhere, my muscles **** (but I am unaware of the jerking???). I am also experiencing confusion and continue to lose weight. One doctor did check my cortisol levels with a saliva test that took a month to complete and the results were high....off the chart high. Other doctors have dismissed this test and say I have fibromyalgia. I just don't think it's that because the pain and symptoms have increased. And I know some measure of pain going through a botched C-section in which the spinal didn't take and I felt every moment of my guts getting sliced open (my daughter was in distress and had to do a C-section) which I really can't describe except for the "snapping" and burning feeling of every layer seperating. So I don't think I am a wimp about pain and don't feel I am exagerating it either. I have a great support group with my friends and family but none of them really understand what I mean and think I am being a wimp :-(
Oh, I forgot to mention one doctor suggested having my teeth pulled to get the infection out of my body. So I did and am 34 and have to wear dentures :-( I really need help. I really need someone who understands this or knows what it is that is wrong with me. I think depression is starting to sink in now. This has gone on for so many years and my kids aren't getting any younger. My son is 13 and my daughter is 12. I am losing quality time with them and that's the worst part of all of this. Does anyone know what is wrong with me?
Any help would be GREATLY appreciated,

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