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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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10 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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Thank you for all the comments. I had my scan on Sept 24th. I expect to have the results this week. I remain on Mestinon. I have not taken steroids yet. However, in the past week walking has become problematic – like I pulled a hamstring – so I expect the neurologist will advise I begin steroids soon, pending what the CT scan reveals with the potential tumour in the thymus.
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https://www.yahoo.com/news/useless-organ-doctors-often-remove-110022508.html
yahoo.com
A 'Useless' Organ That Doctors Often Remove Could Actually Fight Cancer
You may not even know you have one.
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https://www.sciencealert.com/a-useless-organ-that-doctors-often-remove-could-actually-fight-cancer
sciencealert.com
A 'Useless' Organ That Doctors Often Remove Could Actually Fight Cancer
There's a small fatty gland that sits behind your sternum and is often said to be 'useless' in adulthood.
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I was 76 in Oct 2023 when my symptoms started. My Acetylcholine Receptor modulating Antibody was 107 (normal is less than 45). Acetylcholine Binding antibody was 67.8 (normal is less than 0.05). I ended up in the hospital with a Myasthnenia crisis for 2 weeks, during which time I had a plasmapheresis procedure, and immediately I could talk and swallow again. I had gone from 170 lbs down to 119 lbs. I had a Thymoma, so a thymectomy was done Feb 2024. Since then I am off all meds, but I’m receiving Soliris infusion every 2 weeks. Only symptoms now are atelectisis which affects my ability to catch my breath upon exertion, and weak back muscles which cause me to bend forward sometimes when walking. But overall God & good doctors have given me my life back.
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Hello david. I was diagnosed MG back in march 2023. My AchR-ab score was 28 before a thymectomy (no thymoma found but enlarged one considering my age of 59 years old). My thymectomy was 5 months after my MG diagnostic. My first infusion was when I faced a bulbar crisis (before thymectomy) and I was treated with IVIG for 5 days every 4 months since 2023. I have being improved a lot and my last infusion was last week after 5 months since the previous IVIG. My AchR-ab score is going down … right now it is 16 nmol/l (43% reduction rate…but still high)… it looks like IVIG not only helps to improve overall condition but it actually reduces production of AchR-ab…(I found a note on this from a MG medical paper)…keep in mind, as you sure know, IVIG does not work the same for everyone…this would be great to track the AchR-ab score every year… in my case I am measure it every 6 months. I found a great paper from a german research showing how those scores going down after thymectomy… Does anyone else have AchR-ab measurements to share?
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