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AChR Results, Thymona
I was told 0-0.05 AChR was a negative result and that 2.0 + was MG positive. My result was super high number of 215. A surgeon friend told that such a high number was consistent with a thymona. I have a CT scan booked for Sept 24th. My working assumption is that removing the tumour (if there is one) will provide relief. Does anyone have any experience of this?
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5 Replies
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Wow my Achr was 29 when confirmed with MG a year ago. Couldn’t walk,talk, swallow or breathe. Spent 3 months in the hospital. I’m still researching on getting my thymus removed. I have no tumor but seems like it might help with this Mg.
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5 years ago (I was already a passenger on the MG bus) I had open heart surgery. The surgeon decided, what the hell, he was in there anyway, and he knew that I had MG so he went ahead and did a thymectomy. Unfortunately, for me, I didn’t have a thymoma. So, no change in my condition. The research that I’ve done shows that if you have a thymectomy and there was a thymoma in there, there is a small chance that the thymectomy may be curative that’s all the news that’s fit to print
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A thymectomy may or may not work…no guarantees, however, you may not want to look back and say “should/coulda/woulda. I had my thymectomy in 2021 (one year after my diagnosis), using the robotic “Da Vinci method,” with Dr. Louie (he’s tops in his field) at Swedish Medical Center in Seattle, WA (I traveled from S. Oregon and stayed overnight for the procedure). Dr. Louie informed me that current best practice these days is to go in from the left side (which involves collapsing a lung). Unfortunately, due to BPH, I opted for a catheter during the operation and the administering nurse punctured my bladder…so I suggest opting out of that particular offer. To date I’ve had no relief as a result of the thymectomy and am fortunate enough to be on Soliris and mestinon and not any prednisone. I’m 77 years old and the clock is ticking…
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My ACHR was 73 but I have hashimoto and they say it’s higher in this group. I do not have a thymoma.
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I was at 200. Had a thymoma so thymectomy was performed and wow what a difference. Double vision gone upon waking up from anesthesia. Within a week I could walk normally again. Still on meds but more good days than bad! Currently on pyridostigmine 180mg extended release x2 a day. I’m now off of the steroids but still taking Azathioprine and the pyridostigmine. If you have a thymoma I definitely would have surgery.
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