Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Research Article
http://practicalneurology.com/neurologywire/2018/10/12/thymectomy-may-be-effective-only-for-some-forms-of-myasthenia-gravis
Although randomized trials demonstrate that treatment with thymectomy has benefits for patients with nonthymomatous antiacetylcholine receptor (AChR) antibody positive generalized myasthenia gravis (MG), uncontrolled observational studies has suggested that it may not have benefit for those with ant-muscle-specific kinase (MuSK) MG. This is now supported with data from a multicenter, retrospective blinded review of the use of rituximab in anti-MuSK MG. This data was presented at the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) 34thAnnual Meeting in Washington DC Oct 10-12.
Patients with MuSK MG treated with thymectomy (n = 26) and nonthymectomy, including treatment with rituximab were followed for 3 years. Of those who had thymectomy, 9 of 26 (35%) had favorable outcomes; 16 of 29 patients given nonthymectomy treatments had favorable outcomes. The difference between the groups was not statistically significant (P = .017).
The primary outcome was the Myasthenia Gravis Foundation of America (MGFA) Post-Intervention Status (PIS). A score of minimal manifestations on the MGFA PIS was defined as a favorable outcome. The blinded case review also evaluated other immunosuppresent medications, intravenous immunoglobulin (IVIG) or plasmapheresis (PLES) treatment, MG Status and Treatment Intensity (MGSTI) score, and prednisone dose.
Of those treated with thymectomy, 69% were taking prednisone (median dose 10 mg/day) versus 41% of patients treated with nonthymectomy regimens (median dose 0 mg/day, P = .04). After controlling for IVIG/PLEX level, baseline prednisone, and rituximab, thymectomy was not associated with greater likelihood of favorable clinical outcome.
Although this study shows no evidence for the benefits of thymectomy in patients with MuSK MG, the broad confidence intervals also cannot exclude therapeutic effect (OR: 0.43, 95% CI: 0.13-1.48, P = 0.18).
http://research.bmh.manchester.ac.uk/epidemiology/CIGMR/research/autoimmune/Autoimmunity/MyastheniaGravis/
The Doctors said I would not see any improvements for a year or more!
Before I had surgery I could not get up out of a chair without using my arms!
I am just using my legs to get up !!
So far it’s really helped
Me personally just 8 days post opt!
Kansas University Med Center are awesome
Thank you❤️
Good Luck
Russ
Peter
They thought I had a stroke but it’s MG
I live in Arkansas so I was sent to Dr Pasnoor
In Kansas Med Center and she recommended to have my thymus taken out
So I met with Dr Daon
and all of this took place within 4 weeks!
Trying to keep it from going generalized
The data shows great results!
Praying for remission
Lucky you!
wish they had a cure for all of the types of Myasthenia Gravis
http://myasthenia.org/LinkClick.aspx?fileticket=GY2XBdGnO6A%3D&tabid=75
I would say this (of course), but this is really yet another reason to be inclusive with your Neurologist and at the same time show him/her that you are wanting to be involved in your treatment choices.
My surgeon said I was to big of a person to have it
So I had my Thymectomy nov 28th 2019
Doing well still on meds but doing better!
Hoping to put it in remission!
The robotic Thymectomy
Recovery is a lot quicker!!
Hope he does well