Discussions By Condition: I cannot get a diagnosis.

I am a neurological mess......

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • March 10, 2007
  • 08:22 PM

19 years ago I was diagnosed with Hodgkins Disease, Stage 2A. I was treated with radiantion therapy only and thankfully have had no relapse since. In April of 2006 I woke with numbness in my right leg. I went to my PCP who ordered a EMG that was normal. He tried my on a month long treatment of very low dose neurontin that did nothing. During this time the numbness spread to my other leg. They felt like they were "asleep". By now it was into June and they scheduled me to visit a neurologist but not until August. Over the summer the numbness reached up to my diaphragm and stopped with a tight banding sensation around my torso. Other than sensory changes the only other change was I would stub my walk. Then along came August and things went downhill fast. The neurologist ordered a brain and thoracic spine MRI. The brain was normal but the thoracic spine showed a large lesion from T2-3 to T9-10. I have gone through two rounds of IV solumedrol with only a short improvement. I have since gone to a major university hospital/ teaching hospital and had every test they could think of. They have narrowed it down to one of three things. 1) Idiopathic Transverse Myelitis 2) Long term radiation side effect 3) Tumor/lymphoma. The first two are "the most likely". I am tired of going on with no diagnosis. I just completed a five day course of IVIG with minimal results. Has anyone had long term side effects from radiantion therapy like this.....19 years later? I would love to hear from you....

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2 Replies:

  • Sorry to sound pedantic, but there are long-term effects and late term effects. Long-term means it is has always been there, but your body has compensated for it somehow. This might not sound likely in your case, but hopefully it is (and it is quite possible). Then there is late-term, which is an effect that has developed sometime later because of the treatment. Unless this is some kind of obscure tumour, I can't see that this would be likely and it sounds highly improbable to me anyway.
    Anonymous 42789 Replies Flag this Response
  • Have the dr's looked into Lyme disease and other tick infections?? Its possible to have been infected and not have had a rash..Lyme does get into the central Nerve system as well as muscles and organs. Try a search or visit lymenet.org.Just another thought.
    Anonymous 42789 Replies Flag this Response
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