Discussions By Condition: I cannot get a diagnosis.

Central Nervous System and Musculoskelatal problems

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • September 5, 2009
  • 03:33 PM

In Feb, 2009 I went to the family Dr. because I had chronic back pain. They put me through the normal series of physical thereapy, medication etc.. Finally I was sent for an MRI. I had already had cervical neck fusion the Nov. prior so I was familiar with the process. However, th MRI only showed mild degenerative disc disease. I went back to my original surgeon and told him I had numbness in my right thigh also. He send me down for a caudal epidural and a CT scan with contrast of the pelvis. I was immediately to go see an internal medicine Dr. After his exam he told me I had numbness in my lumbar and throacic region, both legs, vaginal and anal area and down the back of both legs. I was immediately sent to the neurologist. He did an EMG which really didn't show anything abnormal. I was put in the hospital for a brain MRI and an MRI of my entire spine, not to mention a spinal tap and lots of blood work. Nothing showed up positive. I returned 2 months later to the Neurologist and this time the EMG showed muscle involvement with infammation. He showed me the difference in between the first and the seconde EMG. That EMG was pretty intense and created a lot of soreness. I was admitted to the hospital again with more MRI's, spinal taps and 70 tubes of blood. My Dr. said my muscles were now week. It also had affected my cranial nerves so the left side of my mouth no longer would move at all. Valium makes it relax and move. My Neurologist said it was either paraneoplastic syndrome or an autoimmune disease. Again, no positive blood work. Muscle spasms have taken over my entire body now except for my Right breast and the right side of my face. I am in constant pain and can't function at all without pain pills. I went from being the energizer bunny who worked 12 to 14 hours a day and went on 6 hours of sleep, to a slug that has no energy and needs 10 hours of sleep a night. Another diagnosis after an EMG of my upper back was stiff persons syndrome. After 5 days of a large dosage of steroids did nothing so that was ruled out. In the morning I walk like Frankenstein. I hurt everywhere and the paraneoplastic syndrome is the diagnosis they are sticking with for now. A pet scan and an ultrasound of my pancreas have found no cancer. I don't go back to my neurologist until the end of October. He says this is my baseline and they are waiting for me to get worse. I am miserable and in so much pain. Any thoughts?

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2 Replies:

  • Get another opinion! Go to another neurologist! ASAP! And maybe a rheumatologist.Don't wait to get worse - those is the comments of an inadequate physician.Don't give up.
    Elegiamore 5 Replies
    • September 7, 2009
    • 11:36 PM
    • 0
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  • Get another opinion! Go to another neurologist! ASAP! And maybe a rheumatologist. Don't wait to get worse - those is the comments of an inadequate physician. Don't give up. The Neurologist that I am seeing specializes in rare disorders. He has offered many times to get a second opinion but doesn't want me to go to mayo because he thinks I can get the same opinion in one day by going to St. Louis, MO Washburn University. The problem is that 7 back MRI's with and without contrast, 2 brain MRI's with and without contrast, a pet scan, 2 spinal taps, CT of the pelvis w/w/o contrast, CT of the chest w/w/o contrast and enough blood work to start my own blood bank, IV steroids for 5 days, b-12 injections etc.... and the only thing they know is that I am numb in the lower half and the EMG's show inflammation in the muscles. From the very beginning he has told me that he thougth it was an autoimmune disease or Paraneoplastic. However, bloodwork is always negative. Now the spasms are throuht out my entire body and never stop. He says this is my baseline??? The only thing they are sure of is that it isn't in my head. I had an OB/GYN consult a neurosurgeon that wanted me to go to Mayo. They got me accepted to the national cancer foundation in Rockefeller, NY. My neuorlogist said no because I don't have a positive paraneoplastic blood work so they would just pump me full of chemo that may not even do me any good. I am so weak now which is the total opposite of what I was in March. I used to be able to go on 6 hours sleep but now require 10 and have to sit for about 15 minutes in the morning just to get a grip on the pain. I really don't even know where to start and the thought of going through unnecessary test that might not show anything just stops me in my tracks. I have had to increase my pain pills so that I can get through a days work without the pain making me anxious. They certainly don't stop the spasms. I am not scheduled to go back until October 29th but after reading your response I am reconsidering waiting it out. I don't want to be one of those pain in the butt patients but I am just miserable. I appreciate your advise!
    Anonymous 42789 Replies
    • September 8, 2009
    • 01:01 AM
    • 0
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