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’m 37 male was a professional athlete, woke up on Feb 05th of this year with double vision and a month after my body started to deteriorate weakness all over. My life have turned upside down. I have 2 kids and a wife I’m trying my best to keep going but it’s hard. Tried Mestinon it didn’t work for me, IVIG worked the first time great, second time only for couple of days, I get IVIG now every 2weeks. I started working with natural path dr he put me on a supplement by the name of Hupperzine A to replace the Mestinon and it works great for me along with some other remedies. I cut gluten, dairy and sugar out of my diet. However I’m booked to do my thymectomy for end of this Oct it’s not enlarged or have tumer. I’m nervous is it worth it ? What I want to know if it’s worth getting the thymectomy or not. If anyone can answer this please let me know. Also where can I sign for these studies that are testing new medication for mg
Mestinon and Huperzine A are supposed to do about the same thing -- treat symptoms of MG to make us function a little better, but do nothing to treat MG's cause. To do that we have to take something that suppresses our immune system from producing bad antibodies. IVIG does that somehow (the mechanism of how it works is not sure) but as you say, it is very short term.
Most neuros start us on prednisone or another immune suppressant and that takes a few months to work for prednisone to a year or more with other meds, and IVIG and Mestinon,
If you have an abnormal thymus, then definitely removing it is very likely to improve your MG. With a normal thymus, a research study completed a year or so ago that is somewhat complicated, but seems to say that people who have had a thymectomy need less prednisone than those who don't have the thymectomy. You can read the details at https://www.nejm.org/doi/full/10.1056/nejmoa1602489 A summary type article that is easier to understand is at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5389494/
Generally the younger you are the more likely your doctor will recommend a thymectomy, but you should be aware that the full results may not show up for a few years and in the meantime you need to figure out a strategy that does work for you. My own was heavy doses of prednisone for 5 months to get rid of MG symptoms and then tapering down to the lowest effective dose long term and also switching to a less irksome drug than prednisone gradually. Luckily, I was one of the 15% who go into remission and after a year MG went away now for 5 years.
Good Luck'
Russ
sorry to hear about your troubles as a new mg patient , first thing i whant to mentione is your thymectomy,
as you mentioned it is not enlarged, inflamed or having a tumor. IT IS NOT WANTED TO HAVE IT REMOVED, would be only beneficial to the doctors (money wise) at yor health expense
i am 79yrs old got mg declared in 2011, , have my thymus gland intact as ir is the only protection that you have for your respiratory system.
i just came out of my worst relapse which i tought it was my last stage, whith good managment of meds, and lots of communmsence ance logic, it can be contro;ed, also i am whit ivgi for a full year , and all is going as it should,
the most important are 3 things to achive it NO STRESS. NO EXCERTION, AND A TSTSL CHANGE OF LIFFE STYLE,
which mean food changes, no red meat, lots of fish, veggies, fruits ect.
also i would suggest the following site to check the druggs given as most of them are not for mg. the site is drugs.com
you tyle the drugg given, check the overview and side affects, thi is about the best dompany to see what doctors are giving.
Best fo lucl (fighter)
mestidone and prednisone are the 2 drugs of choice for mg. as mg is progressive and mestidone act as a counter balance , to stabilize you. prednisone is for autoinmune suppressant and get rid of inflamation.
what you should be more concerned is the other drugs side effects, as the side effects wild cause detriments to mg,
so dont be afraid of it
iam takinh only those 2 druggs, because i am a b2 extreme case and doing just fine this way, every body assimile the drugs, diferently but conclusion is what you do to control these symptoms
best of luck (fighter)
Having just found the MGNews website, I saw this
https://myastheniagravisnews.com/2018/09/07/myasthenia-gravis-letter-newly-diagnosed-myasthenic/
Whilst not written in my style the words are good and indeed the message is sound. At some point, you have to be at one with your Neurologist and literally, take the medicine.
Take care.