I am a 59-year-old female who was diagnosed five years back with the rare I have not had an MRI scan or seen by a neurologist for a follow-up. Since I was diagnosed, I have not been given a prognosis of myelopathy associated with Hashimoto’s. I was paralyzed from the chest down before diagnosis. I was put on a course of three months Steriods and then 125 mg Azathioprine which was in last year and increased to 150 mg currently. I get three hours of physio a week and three monthly blood tests, full blood count, TPO, and TSH.
In your opinion what would be the expected neurological care for this condition, and the absolute minimum acceptable standard of care? Is an annual MRI necessary? Should a specialist be able to provide a prognosis on my condition? Any other advice you consider helpful to me.
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I am sorry to hear about your illness. You are likely suffering from Hashimoto's myelopathy based on your description. It is rare condition and only a handful of cases have been described worldwide. It is known to be very steroid responsive and there should be a remarkable improvement with steroids injections. If you had no response to the injections, I wonder about other diagnoses as well, given you have a history of cervical disc bulge causing weakness.
The best way I can come to a better answer is by looking at the MRI images of the spine and brain, report of CSF studies with CSF level of anti-thyroglobulin and anti-microsomal antibodies. If we are seeing damage in the cord and the muscle power testing is weak with atrophy of muscles, for the past three years, then the recovery will be guarded. I will strongly advise, rehabilitation with PT, OT and botulinum toxin injections or spinal cord pump installation if significant spasticity is there in both legs.
Thank you for your reply.
The only time I have had an MRI scan was three years back. Unfortunately, where I reside we do not have an MRI. While there are only three known cases, everyone might not present symptoms in the same way to that in the reported cases, therefore I am anxious that I am getting the best possible care.
Should I have another MRI scan now to review any changes? Who or what specialist would be able to provide me with a prognosis? I have also got a cyst on my right ovary which might need to be removed. What is the likely impact of general anesthetic on my myelopathy?
Welcome back to icliniq.com.
I would recommend getting an MRI brain and spine with contrast. Also, you will be best treated by a neurologist trained in demyelinating disorders such as multiple sclerosis specialist. Cyst in the ovary (if benign) should not be concerning. Based on the evaluation of your symptoms, if any concerns for paraneoplastic syndrome causing myelopathy, then further evaluation of the ovarian cyst should be considered.
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