December 2015 - I met with my new neurologist, Dr. Donlon. She agrees with Dr. Okuda that we need to figure out what this brain lesion is. We discussed the following items:
- She believes there are two things happening here. A brain lesion and a neurological disease. She said its the only thing that makes sense. So we are searching for two answers now. Tests on the brain lesion, and tests to figure out why I'm having muscle weakness, fatigue, nerve pain, stiff hands, etc.
- We need to rule out the possibility of a vascular lesion. It has to be considered, before we think of a biopsy. She suggests this could be a cavernous malformation.
- Doc states that in her opinion, this brain lesion looks more like a glioma (tumor) than anything else. She said these gliomas can be slow growing for 3-5 years, and then start growing rapidly. She is very straight with me that there could come a day when a biopsy is our only move. She states that she will do everything she can to get us some answers without a biopsy.
- Doc says my symptoms make her think Myasthenia Gravis or Stiff Person Syndrome
- Neuro tests point to Myasthenia or similar condition (muscle weakness increases with repeat testing)
- Reflexes abnormal: Arm reflexes brisk and ankle reflexes absent. Knee reflexes normal.
- We talked about the smaller lesions in my brain. She said they appear to have resolved, but its possible we are just not seeing them in current scans (the MRI machine takes pictures at certain intervals, so it can miss things). She wants a complete scan to see if the smaller lesions are still there. Either way, its a clue about what's going on. If they have actually resolved, it could mean that the neurological process here is Multiple Sclerosis. So that would mean a giant lesion AND MS. The bigger lesion is definitely not part of it.
- Doc orders several tests, including a
1. A repeat MR Spectroscopy (to measure chemicals in my brain) this often can give clues about what is growing there. We did one in 2011 and it was inconclusive.
2. A complete brain MRI (looking for those smaller lesions.)
3. Complete T-spine and C-spine MRIs (She wants to see if anything in my spine accounts for my leg weakness, and wants to see if there is any evidence there of MS or other neurological disease.)
4. Nerve conduction studies of both arms and both legs (looking for answers to muscle weakness, stiff hands, and abnormal reflexes).
5. Paraneoplastic Panel of labs, looking for cancer markers.
6. Tests for Stiff Man Syndrome
7. Tests for Myasthenia Gravis (i tested positive for antibodies in the past.)
8. Tests for Williams Syndrome and Copper Toxicity
9. Tests for a variety of other neuro conditions
10. PET scan of my brain
- She believes there are two things happening here. A brain lesion and a neurological disease. She said its the only thing that makes sense. So we are searching for two answers now. Tests on the brain lesion, and tests to figure out why I'm having muscle weakness, fatigue, nerve pain, stiff hands, etc.
- We need to rule out the possibility of a vascular lesion. It has to be considered, before we think of a biopsy. She suggests this could be a cavernous malformation.
- Doc states that in her opinion, this brain lesion looks more like a glioma (tumor) than anything else. She said these gliomas can be slow growing for 3-5 years, and then start growing rapidly. She is very straight with me that there could come a day when a biopsy is our only move. She states that she will do everything she can to get us some answers without a biopsy.
- Doc says my symptoms make her think Myasthenia Gravis or Stiff Person Syndrome
- Neuro tests point to Myasthenia or similar condition (muscle weakness increases with repeat testing)
- Reflexes abnormal: Arm reflexes brisk and ankle reflexes absent. Knee reflexes normal.
- We talked about the smaller lesions in my brain. She said they appear to have resolved, but its possible we are just not seeing them in current scans (the MRI machine takes pictures at certain intervals, so it can miss things). She wants a complete scan to see if the smaller lesions are still there. Either way, its a clue about what's going on. If they have actually resolved, it could mean that the neurological process here is Multiple Sclerosis. So that would mean a giant lesion AND MS. The bigger lesion is definitely not part of it.
- Doc orders several tests, including a
1. A repeat MR Spectroscopy (to measure chemicals in my brain) this often can give clues about what is growing there. We did one in 2011 and it was inconclusive.
2. A complete brain MRI (looking for those smaller lesions.)
3. Complete T-spine and C-spine MRIs (She wants to see if anything in my spine accounts for my leg weakness, and wants to see if there is any evidence there of MS or other neurological disease.)
4. Nerve conduction studies of both arms and both legs (looking for answers to muscle weakness, stiff hands, and abnormal reflexes).
5. Paraneoplastic Panel of labs, looking for cancer markers.
6. Tests for Stiff Man Syndrome
7. Tests for Myasthenia Gravis (i tested positive for antibodies in the past.)
8. Tests for Williams Syndrome and Copper Toxicity
9. Tests for a variety of other neuro conditions
10. PET scan of my brain
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