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My name is Carrie. I have been a member of NeuroTalk for a little while and posted almost exclusively on the Thoracic Outlet Syndrome forum. Thankfully, my TOS (vascular) is resolved (for the most part) folloiwng surgery. I thought I was done with medical issues for now, but new symptoms have unfortunately surfaced and I am far from a diagnosis of any type. I'd really love to hear from anybody who might have any experience with or ideas about my new symptoms.

A little history: I started taking Baclofen (40+ mg/day) for the nerve pain associated with my TOS 9-12 months ago. It worked really well for that and I had no notable side effects. About 6 months ago, I began having myoclonic jerks in various and asymmetrical body parts with no apparent pattern except that they would usually happen while I was at rest, sitting watching TV, on the computer, at a stoplight in the car, lying awake in bed, etc. I was having about a dozen a day, but they usually weren't intense enough for anybody to notice (except for me, of course). I was having such a hard time getting diagnosis and treatment for my TOS (check out my posts in TOS section) that I didn't mention the myoclonic jerks to anybody for fear that it may delay TOS treatment and/or just complicate issues. They seemed minor and I decided to wait until after the TOS surgery to talk to the doctor about them.

During and immediately after my surgery, while still in the hospital, I was not given Baclofen as it was for nerve pain and I was on all the heavy-duty Dilotid, Demerol, etc. via IV/IM. About 3 days post-op, I began having strong and frequent myoclonic jerks, sometimes several within a few minutes. My husband said I was having them all the time while I was sleeping too. Although I didn't need it for pain, I suspected the myoclonus may be related to the lack of Baclofen and so I mentioned it to the nurses that I was supposed to be taking it. They confirmed it on my chart and started giving it to me. When I was discharged 2 days later, the myoclonus was much better, albeit still present.

About 3 weeks post-op, I decided to stop the Baclofen again on my own to see what would happen. The myoclonic jerks came back with a vengeance along with tremors and blurred vision. I started back up on the medication and went to see the doctor. We discussed how Baclofen can both cause and treat myoclonic seizures and how withdrawal from Baclofen can cause severe myoclonus. Sooooo . . .

He put me on medication tapering schedule to slowly get off the Baclofen to see if the myoclonus would go away. Three weeks into the schedule, the frequency and intensity increased again. I stayed on the same Baclofen reducing schedule, but we added low-dose Valium to control the myoclonus. It's been over 6 weeks now. My last Baclofen was 5 days ago. I am still on low-dose Valium and will stay on it for a month before tapering off that too. Right now, the "jerks" are definitely still there and just as frequent, but barely noticeable (even to me sometimes). But, in the last few weeks or so, they've also started happening in response to certain actions/movements, rather than just when completely at rest.

A full blood workup showed all electrolytes, Ca, Mg, K, etc. are good. The only abnormality is low Free T4 (with a normal TSH level). This wasn't terribly surprising as I was diagnosed with a small 10 mm cold nodule on my thyroid about a year ago too (with normal thyroid hormone levels at that time). Did a new thyroid ultrasound yesterday to see if nodule has changed any in the last year and started on Levothyroxine.

I have read that thyroid hormone levels can be related to myoclonus. I also read that a low Free T4 with a normal TSH can be related to the pituitary gland which isn't part of the brain, but sits directly underneath it. So - - - finally, my question is:

Could the myoclonic seizures be somehow related to the thyroid and/or pituitary glands? Or does anybody have any other ideas? I have 2 doctors stumped so far, but my appointment with the neurosurgeon isn't for a few more weeks.

Thanks