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...
i have been missing for awhile because my situation was not changing In december last year they diagnosed me with generalized myasthenia without thymoma.I was treated with mestinon 60 mg 3 to 4 times a day.
In june i had another ct because my symptoms were worsening so they suspected thymoma.now
3 days ago i had a thoracoscopic thymectomy in leuven (belgium).I woke up and the pain was manageble even without the planned painpump.
Today (the 25th i only have 1 thorasic drain that will be removed tommorow ,i also will be going home tomorrow.I didnt have any obvious MG symptoms during this period but was als allowed to take my mestinon like before surgery.
But today i am feeling "weird" i have strenght in my arms and fingers but they feel off somehow trembly ,and also my eyes are out of sorts i dont have double vision but when i look at lined patterns i get confused and really need to focus .Maybe its the lack of sleep (i didnt sleep for more than 3 hours on end because of the drains,probes, iv's,...and discomfort)or maybe its all getting to meThey asked a neuro consult for today or tomorrow i will keep you posted.
The results from the pathologist arent in yet but my thymus was enlarged
With happy greetings.that the operation is over
In june i had another ct because my symptoms were worsening so they suspected thymoma.now
3 days ago i had a thoracoscopic thymectomy in leuven (belgium).I woke up and the pain was manageble even without the planned painpump.
Today (the 25th i only have 1 thorasic drain that will be removed tommorow ,i also will be going home tomorrow.I didnt have any obvious MG symptoms during this period but was als allowed to take my mestinon like before surgery.
But today i am feeling "weird" i have strenght in my arms and fingers but they feel off somehow trembly ,and also my eyes are out of sorts i dont have double vision but when i look at lined patterns i get confused and really need to focus .Maybe its the lack of sleep (i didnt sleep for more than 3 hours on end because of the drains,probes, iv's,...and discomfort)or maybe its all getting to meThey asked a neuro consult for today or tomorrow i will keep you posted.
The results from the pathologist arent in yet but my thymus was enlarged
With happy greetings.that the operation is over
Glad you are going home. Pamper yourself when you get home and give your body time to heal. Some feel MG symptoms subside soon after surgery, some it can take up to a few years. Hope you are in the first group:)
Let us know what the neuro says.
Hoping your pathology shows no thymoma. Make sure you get a copy of your pathology report.
hugs
sherry
i sure will keep everyone informed
why do i need a copy of the report?
grts stef
It is a good idea to get copies of all your medical records, particularly laboratory and other pathology reports. It helps when you are seeing more than one doctor to be sure you have the information they need (sometimes doctor to doctor communication breaks down) and you are better able to ask questions when you know what has been reported. (You can be sure the right name is on the reports being sent.) b.
Ann
close your eyes
dark rrom
and take this advice......I have been where you are
Visitors add stress
you need rest, rest rest.
I agree with everyone else! Rest! Look after yourself! I had my thymectomy in May. My MG symptoms did flare up a bit post surgery but settled down within a couple of weeks.
Take care
Gez
just an update on how i am doing and a verry big thankyou to everyone who replied and send good thoughs my way.
I am home now for 3 weeks ,i have been resting quite a lot and my myasthenia seems to be better (is it the resting or the thymectomy ? time will tell i gues but i am hopefull.I still cant walk on my heels though( not the shoes ) i dont know if anyone else whit myasthenia has problems with that?it worries me to be honnest..I have an appointment with a new neurologist on the 28th .Other than that no news yet on the pathology rapport of the thymus.I will keep you all posted
with regards stef
So glad you are feeling better and please continue to keep us updated. b
Take care and best wishes on your pathology results!
just an update just like i promised
i went to my surgion today (5 weeks post surgery) and my scars are healing fine .my MG symptoms are better untill now but its still early days and tommorow i will resume working what will be the big test to know where i stand.my pathology rapport showed no tumor witch is the best news .fingers crossed that i will be witch the lucky ones and that i will have a remmission or benifit from the surgery .I still take 4 mestinon 60mg a day and have an apointment with my neuro on the 18th of febr because she preferred to laeve my meds untill i settled in my work ... understandeble.
i will leave you all now and will keep you guys updated on my (hopefully) progress.
With the best and healthy wishes for this year
stefanie
Take care,
Annette
Peace be with you.