Discussions By Condition: I cannot get a diagnosis.

2 years, no diagnosis and getting worse.

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: slightlyjaded
  • June 9, 2011
  • 03:47 AM

It has been over 2 years since I first got sick. Durring that time, I have had several issues going on, with no firm idea of whats wrong, except low vit D and hashimotos (which seems to be under control.)
My symptoms seem to go in cycles between horrible headaches, upper back pain, pain in the right side of my neck and jaws, left side under ribs pain and chest pains. Latly I have also been getting tingling in my shoulders, weaness in my arms and a rubbery feeling in my legs. I have had many tests in the last 2 years, Brain MRI, chest x-rays, a chest CT (way at the beginning of all this) lots of blood work..etc. The chest pains seem to come and go and are not brought on my exercising. I also went to the cardiologist and had a stress test and a ultrasound of my heart. all of that came back fine. But I continue to be in greater pain. Yesterday I had a horrible migraine, my jaw ached and my arms felt weak, the pain in my chest almost feels like there is a ball or something in my chest. I seriously thought of going to the ER, but finally started feeling better around midnight. Today the migraine is gone but I have the upper back pain near my spine and pain on the right side of my neck (pain has been there for a few weeks now)
Most days I cant do much, I get a few household chores done, meals cooked for my son and then the rest of the day in bed. Life is no where near "normal".
I really feel like my Dr is missing something. I have a friend who has had the same pain in the back and side that I have had and she was recently diagnosed with Stage 4 lung cancer that had spread, and she had been going to the doctors several times a month for almost a year before they found that! I am going to the Dr again this Friday and am going to be more firm about getting some answers. So far she has just given me flexeril, but I dont want to take something to mask the pains until I know what it is I am masking.
Any ideas on what I could say to my doctor to get some answers/questions to ask..or ideas of what could be causing this pain would be appriciated.

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7 Replies:

  • hi. regarding headaches: there are too many reasons causing headaches, but if your brain's mri scans are clear, try to check cerebral vasoconstriction diagnosis (narrowing blood vessels in the brain). Such pathology can be noticed only by means of angiography methods (CTA or MRA with contrast agent), not by ordinary MRI. You also may have degeneration process in your nervous tissue in your brain, but I'm not sure, it should be investigated separatedly. If you want, I can give you full diagnostics of your diseases.
    alltimatehelp 128 Replies Flag this Response
  • Wow - you sound just like me - I have been going for over two years brain scans; heart test; stress test; nuerologist; I finally was diagonoised with gastroparesis (very slow stomach emptying) so can not eat solid foods now. Can't find out the cause as I am not diabetic - so it must be nerve damage or autoimmune diesease. But so far all test have come back without answers. I don't know where to go from here. Feel good for a couple of days and then such horrible pain in the chest; back shoulder; pain/tingling arms; knees; weak legs. I also had a terrible migraine a couple of weeks ago and also low on VitaminD. I am asking to be referred to a University Hospital where hopefully tests will be run all in one spot so someone can see the whole picture and not specialist after specialist who only deal with one part of the body.
    Anonymous 42789 Replies Flag this Response
  • So, I went back to the Dr, she felt my back a little said the muscles were tight and prescribed Flexeril and a strong NSIAD and told me to come back in 2 weeks if it isnt better. I am thinking after 2 years of being able to do nothing, it probably not a tight muscle. We will see. This is probably my 20th time of "lets try this and come back if it doesnt help" It has been over 2 years since I first got sick. Durring that time, I have had several issues going on, with no firm idea of whats wrong, except low vit D and hashimotos (which seems to be under control.)My symptoms seem to go in cycles between horrible headaches, upper back pain, pain in the right side of my neck and jaws, left side under ribs pain and chest pains. Latly I have also been getting tingling in my shoulders, weaness in my arms and a rubbery feeling in my legs. I have had many tests in the last 2 years, Brain MRI, chest x-rays, a chest CT (way at the beginning of all this) lots of blood work..etc. The chest pains seem to come and go and are not brought on my exercising. I also went to the cardiologist and had a stress test and a ultrasound of my heart. all of that came back fine. But I continue to be in greater pain. Yesterday I had a horrible migraine, my jaw ached and my arms felt weak, the pain in my chest almost feels like there is a ball or something in my chest. I seriously thought of going to the ER, but finally started feeling better around midnight. Today the migraine is gone but I have the upper back pain near my spine and pain on the right side of my neck (pain has been there for a few weeks now)Most days I cant do much, I get a few household chores done, meals cooked for my son and then the rest of the day in bed. Life is no where near "normal".I really feel like my Dr is missing something. I have a friend who has had the same pain in the back and side that I have had and she was recently diagnosed with Stage 4 lung cancer that had spread, and she had been going to the doctors several times a month for almost a year before they found that! I am going to the Dr again this Friday and am going to be more firm about getting some answers. So far she has just given me flexeril, but I dont want to take something to mask the pains until I know what it is I am masking.Any ideas on what I could say to my doctor to get some answers/questions to ask..or ideas of what could be causing this pain would be appriciated.
    slightlyjaded 3 Replies Flag this Response
  • have you gotten blood tests for parasites, they can cause all kinds of problems depending what particular ones you have. 90% of people have them without knowing and parasites have been diagnosed as cancers and tumors. Might be worth a try, Good luck.
    Anonymous 42789 Replies Flag this Response
  • What is your age? If its more than 60, try going for a hormone check up and see if they're low in numbers. I read an interesting article about the wonders of testosterone therepy and the good effects of it. Also, does a PET not rule our Cancer completely? I also read somewhere that a full body PET is possible and thats the best thing to detect cancer. So, I went back to the Dr, she felt my back a little said the muscles were tight and prescribed Flexeril and a strong NSIAD and told me to come back in 2 weeks if it isnt better. I am thinking after 2 years of being able to do nothing, it probably not a tight muscle. We will see. This is probably my 20th time of "lets try this and come back if it doesnt help"
    varunb82 2 Replies Flag this Response
  • I was also very low on Vit D. Have you been check for autoimmune diseases? One Dr told me that if you have one, there is a greater chance you could have a second one too. Its sad to see how many people are ill without being able to get answers!I just keep talking to different Dr's, searching the internet and hoping one day to get this figured out :) Good luck to you! Wow - you sound just like me - I have been going for over two years brain scans; heart test; stress test; nuerologist; I finally was diagonoised with gastroparesis (very slow stomach emptying) so can not eat solid foods now. Can't find out the cause as I am not diabetic - so it must be nerve damage or autoimmune diesease. But so far all test have come back without answers. I don't know where to go from here. Feel good for a couple of days and then such horrible pain in the chest; back shoulder; pain/tingling arms; knees; weak legs. I also had a terrible migraine a couple of weeks ago and also low on VitaminD. I am asking to be referred to a University Hospital where hopefully tests will be run all in one spot so someone can see the whole picture and not specialist after specialist who only deal with one part of the body.
    slightlyjaded 3 Replies Flag this Response
  • I am 45. Ive wondered about horones too. i do not know too much about PET scans, I wouldnt mind having one though. Not sure I could talk my insurance company into it even though they have probably paid 10 times the cost on Doctors visits that dont help..lol! What is your age? If its more than 60, try going for a hormone check up and see if they're low in numbers. I read an interesting article about the wonders of testosterone therepy and the good effects of it. Also, does a PET not rule our Cancer completely? I also read somewhere that a full body PET is possible and thats the best thing to detect cancer.
    slightlyjaded 3 Replies Flag this Response
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