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...
hello ,
i am a 32 year old mom (my son is 11 months now).In december my eyes fell shut in the car while i was wide awake.since i am a nurse i went to a neuro asap(I became vigilent in everything that was going on in my body that i just wrote of as overtyerdnes and just gave birth to a baby and giving breastfeeding.I noticed heavy arms and left leg ..First the neuro eliminated MS (family members have that)and when those test came back negative he testes for mg = positive bloodtest antibodies.
since januari i was on 4 mestinon a day and i was managing but now we are tappering of to see what wil happen and if i can get a thymectomy .I also had some antibodies agains my thyroid but he didn't elaborate.
. week ago i complete went through my legs while putting on pants while falling i tried to hold myself up with my arms but als hadn't the stranght.After taking my mestinon i could go to work (4 hours for now on the recovery ward)I am om 2 mestinon a day for now 1 at 7h and 1 at 19h
normally i should have stopped last monday but was afraid of what would happen (i have a child) So tommorow i should go to my neuro and discus everything ,i also filmed myself while doing some fatiguetest (since when i am at the neuro i passed them everytime).I also have a strange heavy feeling in the back of my throat and am worying if it is coincidence or something more.I dont have trouble swallowing liquids or food.
i am verry worried and afraid.What wil happen next?We should be trying for a 2 baby according to 2 different neuro profs that shouldnt be a problem but is there somebody with experience?
any responce will warm my heart
thank you
stef
i am a 32 year old mom (my son is 11 months now).In december my eyes fell shut in the car while i was wide awake.since i am a nurse i went to a neuro asap(I became vigilent in everything that was going on in my body that i just wrote of as overtyerdnes and just gave birth to a baby and giving breastfeeding.I noticed heavy arms and left leg ..First the neuro eliminated MS (family members have that)and when those test came back negative he testes for mg = positive bloodtest antibodies.
since januari i was on 4 mestinon a day and i was managing but now we are tappering of to see what wil happen and if i can get a thymectomy .I also had some antibodies agains my thyroid but he didn't elaborate.
. week ago i complete went through my legs while putting on pants while falling i tried to hold myself up with my arms but als hadn't the stranght.After taking my mestinon i could go to work (4 hours for now on the recovery ward)I am om 2 mestinon a day for now 1 at 7h and 1 at 19h
normally i should have stopped last monday but was afraid of what would happen (i have a child) So tommorow i should go to my neuro and discus everything ,i also filmed myself while doing some fatiguetest (since when i am at the neuro i passed them everytime).I also have a strange heavy feeling in the back of my throat and am worying if it is coincidence or something more.I dont have trouble swallowing liquids or food.
i am verry worried and afraid.What wil happen next?We should be trying for a 2 baby according to 2 different neuro profs that shouldnt be a problem but is there somebody with experience?
any responce will warm my heart
thank you
stef
I wish you well. Surely there are others around that have faced similiar decisions.
Good luck to you.
Best wishes for peace,
TJ
Deciding whether or when to have another child really is another consideration. This is a recent discussion, but you can find more using the search function above the discussion board:
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/13599198-myasthenia-and-babys
Please let us know how your visit goes. b.
Welcome to our group. You will find our members to be resourceful and able to offer helpful advice from the life time experience with MG.
B..give you the most important information to check out our MG Links and News at http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news. Be sure to select the View All to see all of the articles.
You will find in those resources A Manual for the Healthcare Provider. It covers every aspect of MG and includes a section on page 25 dealing with pregnancy.
My personal advice is to make sure your neurologist has a special interest in MG, is seeing numerous MG patients (MG is very rare so 10 to 30 would be great). My doctor sees 30 MG patients. I share with your from my personal experience my first year with MG was very bad due to my doctor not having the necessary experience.
Like many others in this group, we travel outside our community to find a neurologist who has a special interest in MG and is current with newest treatments and research.
You may wish to do another post to find any members that may live in your area and could give you recommendations on doctors and medical facilities.
Wishing you the best.
Bruce
Just some additional info I just thought of. You may wish to check the follow web link to see if you have a local MG Support Group. http://www.myasthenia.org/CommunitySupport/SupportGroupCalendar.aspx They are sometimes a great resources for MG doctors they may recommend.
Some of our members have also found MG doctors and support through the local MS Chapter.
The number I give you 10-30 is subjective. It really depends on the size of your communitybut most important do not hesitant to question your doctor about his experience of MG patients. Be sure to try to find out the types of patients and his success.
I cannot interrelate the importance to have a excellent MD doctor. The first year is very important to get your MG under control, especially if you want to get pregnant.
Bruce
I have to agree that getting your MG under "control" is first and foremost.
Wishing you well.
Larissa
Sorry..I need to correct my earlier post. It is not MS but MDA society that also can provide MG support.
Bruce
read the posting titled: ''Nervous Newbie''.
Someone else - who is going through the same thing.
- Ross
PS:
Yes - the MGFA publication:
''MG: A Manual for the Health Care Provider''.
Is a good source of MG info.
(As is - this support group!)
just an update of my situation
sorry if it took so long but my regular neuro kept pushing me to tapper down the mestinon but i refused because i was very unsure finaly he got me an appointment with a neuromuscular prof (prof robbrechts in belgium Hospital UZ leuven) i had to do the same exertion test like in febr but now i failed them mostly (except my eyes) because i hadnt taken my mestinon.He also checked my bloodwork ,a single fibre study and a longfunction.But i have to wait the results because my bloodwork hase to be send to holland!!! (check if my AB are rising) He also said it started to reek of a thymectomy but he will deside when al the result are in.I don't know what to hope for surgery or not.Also he said it isnt recommended to have a baby in the first year( my heart broke)and he couldnt guarantee if he will ever give the green light so i am verry upset..But in the meantime i can take 1 mestinon 60mlg every4 hours and if neccesery 1 extra .I am still working and doing pretty good not considering i fell 2 days agio.Also last time i fell i was about to have my periods (i am verry irregular because i have PCO cystes on my overies )Myabe i get worse when my hormones kick in .My local neuro said he doesnt think so.I am still trying to wrap my head around everything and do a little research but thats not easy with a 1 year old riunning the house
with much regards stef
I just wanted to tell you that my symptoms do get worse around my time of the month. I do think hormones play a role in flare ups for sure.
Best of luck to you.
Amy
just had news much sooner than expected
i have to take another ct thorax and then make an apoinbtment with a thorasic surgeon
we all know where this is headed
will update asap
greets stef
had my ct last friday and ... thymoma present of 2.2 to2.4 cm (last ct was in december and there was nothing to see).Now there is no choice i have to have a thymectomy.My next apointment will be with a thoracic surgion on 3 september (i'm trying to get an earlier date).
should i be happy about this news or not.???
Take care of yourself. If I was you I wouldn't prevent pregnancy nor encourage it. Take care of self and family as best as you can.
Ann
MG is nothing to be particularly happy about, but having a thymoma may mean a thymectomy will make a big difference in your symptoms.
Since we really don't have a choice, we need to be doing all we can to minimize the problems, which means taking care of ourselves, including finding the joy in every day. Especially in the beginning, this is really a roller coaster ride both with symptoms and emotions. Hang on, we're here with you and for you.
b.
There are plenty of MG members that have undergone a thymectomy on this site. Don't be afraid to ask questions. I am sorry to hear that the CT showed a thymoma, but the good news is that removing the thymus will eliminate that problem. Also, the thymectomy offers the possibility of helping MG. There are plenty of MGers who have had great success in having thymus removed.
Good Luck
J
I had my thymus out on July 3 of this year, and am doing great. My surgery was done via partial sternotomy (cutting through the breast bone), and I came through it like the tough old bird that I am. Sunev had the surgery earlier this spring, and had a different procedure entirely - hopefully she'll chime in. Do some research on the different types of surgery, and request the type you prefer when you see the surgeon. Hugs Stef - you'll get through this!
binia