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...
Hi All,
My name is Shannon and I am a 22 year old female recently diagnosed with Myasthenia Gravis. As many of you should know it is quite devastating and has been an upward battle for the past four months. All while this was happening, I did in fact manage to finish my undergraduate degree and although I am sort of drowning in my MG, I try to take some time to be proud of myself.
I'm not too sure who will take the time to read this but hopefully someone does. I noticed ocular symptoms in about August 2012, not so much blurry vision but problems with my eyes adjusting to near or far objects. The second symptom i realized was my inability to 'smile' properly. I felt as though i was almost grimacing oppose to smiling, which is still to date one of my most bothersome symptoms. That also moved to me having difficulty presenting in school with my speech getting tired after a presentation. Later that moved to me having difficultly chewing food properly. The other other symptoms I experience is my arms and legs have a 'heavy' feeling sometimes as well.
In November my neurologist suspected that I had MG and i started taking Mestinon 60mg 3X daily. At first I thought wow this is making the world of difference. Then as many other experience, it was not enough treatment. I also switched my mestinon dose to 60mg 2X daily, with taking a 180mg time released pill at around 7pm. I recently (1 week ago) introduced prednisone to my medication as well. I am on 10mg of prednisone daily, and am hesitant to go any higher. My neuroligst wanted me to be on 20mg but obviously I wasn't ready for what comes along with that, so we settled for 10mg even if it isn't my best option.
My CT scan came back normal. My specialist believes that I should get the thymectomy although this has come back normal given my age and profile. I obviously want the least invasive procedure and have yet to talk to the surgeon yet. What does everyone think? Should I get the thymetomy? I am so eager to begin a career and start my life being fresh out of university and want this to get better so badly. I am not going to stop fighting obviously, but want the opinion of those who have experience with this.
Also, on January 8th (next week) i think the doctor wants to introduce Imuran to me. Lastly, my blood work tested positive for the antibody.
THANK YOU TO WHOEVER READ THIS. It really means the world to me.
My name is Shannon and I am a 22 year old female recently diagnosed with Myasthenia Gravis. As many of you should know it is quite devastating and has been an upward battle for the past four months. All while this was happening, I did in fact manage to finish my undergraduate degree and although I am sort of drowning in my MG, I try to take some time to be proud of myself.
I'm not too sure who will take the time to read this but hopefully someone does. I noticed ocular symptoms in about August 2012, not so much blurry vision but problems with my eyes adjusting to near or far objects. The second symptom i realized was my inability to 'smile' properly. I felt as though i was almost grimacing oppose to smiling, which is still to date one of my most bothersome symptoms. That also moved to me having difficulty presenting in school with my speech getting tired after a presentation. Later that moved to me having difficultly chewing food properly. The other other symptoms I experience is my arms and legs have a 'heavy' feeling sometimes as well.
In November my neurologist suspected that I had MG and i started taking Mestinon 60mg 3X daily. At first I thought wow this is making the world of difference. Then as many other experience, it was not enough treatment. I also switched my mestinon dose to 60mg 2X daily, with taking a 180mg time released pill at around 7pm. I recently (1 week ago) introduced prednisone to my medication as well. I am on 10mg of prednisone daily, and am hesitant to go any higher. My neuroligst wanted me to be on 20mg but obviously I wasn't ready for what comes along with that, so we settled for 10mg even if it isn't my best option.
My CT scan came back normal. My specialist believes that I should get the thymectomy although this has come back normal given my age and profile. I obviously want the least invasive procedure and have yet to talk to the surgeon yet. What does everyone think? Should I get the thymetomy? I am so eager to begin a career and start my life being fresh out of university and want this to get better so badly. I am not going to stop fighting obviously, but want the opinion of those who have experience with this.
Also, on January 8th (next week) i think the doctor wants to introduce Imuran to me. Lastly, my blood work tested positive for the antibody.
THANK YOU TO WHOEVER READ THIS. It really means the world to me.
Check out an earlier discussion, still fresh on the same topic at
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/15372606-new-here-thoughts-thymectomies
Although there are many opinions, the discussion seems agree that that those who have had a thymectomy have thought it was a good decision--and if it didn't fix their MG permanently, it improved the symptoms and gave some of them many years of remission.
It is important to find a neurologist you can talk to--someone you trust. That means you need to be clear about your reservations, and listen to the guidance you get. Your neurologist seems to be offering good advice and treatment options--very much what most of us have heard too.
Good Luck
The research I did seemed to point to better results in the beginning stages of the disease.
My thymus did not appear normal though so mine was not a question of "if" as much as "when".
I chose the robotic procedure and am happy about my choice!
Love, Becca
Also, this is my fifth month battling this disease. How much worse do you think it will progress or did it for you? They said within the first two years you will know how bad it could possibly get, im just wondering what your experience with that is also?
Thank you :)
I wish you all an amazing 2014, with good health and happiness.
The most positive results of thymectomy based on clinical research actually favors young women like yourself with a normal thymus. If you get it done, I would put your chance at some kind of remission around 30 percent, with or without medication.
I had my Thymectomy 2 years ago, it has been a long road, but I am doing much better today. My Thymectomy was not really a choice I had to make, I had a huge thymoma that needed to be removed. Due to this, and my surgen's opinion that he is able to remove 'all' the thymus gland through the full sturnum procedure, that is what I had done. The thing is, if any part of the Thymus is left behind, it has a good chance of growing again, or just causing more issues.
The best is to have a good discussion with your medical team (Neuro & surgen) and make a decision then, Good Luck nd all the best
Rgds
Christo
Welcome.
You would have been a good candidate for the thymectomy trial (which is closed to recruitment) that is ongoing. Priliminary results will be published in 2015, but that may be longer than you want to wait to make a decision, and as in so much of what we encounter, the results may be inconclusive.
Asking here about thymectomy will give you a good overview of what people have experienced, but not an unprejudiced answer to your question. Those who have undergone the procedure need to believe that was the best option and those who have not, the same.
If there IS benefit of thymectomy, it seems that you fit in the group most likely to benefit. But even so, that is not a promise of lifelong remission, although any of us who do not have remission with our treatment would not object to any years of remission a drug or surgical procedure would give us.
Ptobably the best thing to do is to talk to those who will be supervising your care. Be sure you have confidence in them and that they have seen enough MG to have a good feel for the vagaries of the condition and are not just reading statstics. In other words, they can view your particular needs in comparison to others like you.
All our treatments have risks. All. Mestinon is the safest, but does not affect the antibody production, thymectomy may remove a great deal of the problem, but may also remove a great deal of our protection from other invaders Any of our treatments that affect our immune system may make us ineligible for safer and better treatment in the future. In other words, if the treatment relies on an intact immune system, thymectomy or some drugs may mean the treatment will not work. However, we also need to live and function (which may include spontaneous remission) until that time.
Good luck and a good experience with whatever you and your neurologists/surgeons/ anestheiologists decide. If you do go the route of surgery, be sure both the surgeon and anesthesiologist is experienced in working with MG patients and ideally the rest of the staff who will be treating you as well. We have a Links Group with all sorts of information about emergency and hospital needs and medications and tips for daily living, etc. You can reach it from the bottom right of the main discussion page. b.
Well said.
I was diagnosed in April 2011 and still havent decided whether to have a thymectomy. I will be 30 later this year. I will discuss the options further with my neuro on 7JAN. I have a normal thymus. I have been taking Imuran since OCT2011 and it doesnt seem to be working. I have found that MG requires a lot of patience and positive thinking and lots of rest even if you feel good. I was on maternity leave at the time I was diagnosed and was able to return to work in JUL11 on a phased basis. I work in an office. I am still working full time (2 days from home). I still need to find the right balance with medication as I recently had to increase Prednisone from 22 mg - 40 mg daily after being exposed to cold/flu. 40mg has been my highest dose. I also take 4 x 60 mg Mestinon and 125 mg Imuran (which I am considering stopping as I cant see any benefit after more than a year). You will soon find what works for you and as others have said you should speak to your specialist about your thymectomy options.
Feel free to ask me any questions you may have.
I highly recommend thymectomy before you get any worse. When immurane starts to work and benifits of thymectomy take place then you can go off immurane.
Cellcept does what immurane does. I am happy with cellcept.
You are one of the lucky ones who has diagnosis and appropriate treatment plan
Move forward to keep from getting worse
Ann
You can go off prednisone
I know that nearly all of you have recommended the surgery, but i dont feel like there are consistent results from the surgery. For example (and i am new to the site) under the treatments tab (thymectomy) people's experience with the surgery is so inconsistent. Some say it helps, some say it does nothing, some say it provided a brief period of remission. I really am not quite sure what to do... this is a very big surgery and i dont want to get it done and have no improvement in my quality of life.
Has anyone else found that with the right dose of medication (once this has been achieved) that you have your MG under control? That you do live a relatively normal life? I just wish this didnt happen so bad....maybe i havent come to terms with it like many of you.
Thanks.
You will find that most of us that do recomend the surgery have had positive results, but yopu are 100% correct in that there is no clear evidence that it is effective in all patients. Then top add to that, the results, can take 1 year or more to be seen. It is now 2 years since my themectomy, and we only started seeing any improvements after about 14 months.
My Neuro was very clear in letting me understand that there may be no benifit from the Op, but like I said earlier, we really had no choice. I had a major crisis, and during my stay (and diagnosis) in hospital, they found that I had a huge Thymoma - so it was 'easy' to decide to go ahead with the procedure.
But if you decide not to have the Thymectomy, I suggest that you keep an eye on the Thymus for any possible development of a Thymoma - as it is a fact that us with MG are more prone to developing these horrible things!!
Regarding what level of medication, I think that most will agree, and you might have already seen, there is NO constant here, this is the 'snow flake' desease in that we are all different. This is not the answer you are looking for, but unfortunately the truth is that you will have to find this level working with you Doc. and also some self analysis. the issue I struggle with the most is getting the balance right as my condition changes. I think that the best is not to make radical adjustments, becuase on good days or weeks, you feel inclined to drop the Meds quite a bit, I would caution against this, as the results can be disapointing and you are back to step one. Predisone needs to be adjusted very slowly and work with your Doc on this. Mestinon can be more about 'take as you need' when you get to that point, else find a good consistant dose and stick to that untill you feel you can either reduce or need to increase this.
Hope this is of some assistance - please excuss all spelling errors :-)
Christo
My first and only MG symptom (ptosis) appeared 10/28/11, I was diagnosed with a very positive antibody test within a week (thankfully) by an opthamologist. My neurologist ordered a CAT scan, which showed a hyperplastic thymus, slightly enlarged. He strongly suggested a thymectomy and set up an appt with a thoracic surgeon. Six weeks later I had a full sternal thymectomy on12/20/12. My slightly enlarged thymus was actually 4" by 4" by 2" upon removal, a lot bigger than the CAT scan showed. I was released Christmas Day. Two - three weeks after surgery, my ptosis was gone and still is. I continued the mestinon for another month and then got the okay to stop.
Yes, the pain was immense, but painkillers did their job. For me the worst part of the surgery was not being able to sleep on my side for 9 weeks.
Yes I was one of the "lucky" ones.
But I can assure you that I had I not had the surgery, I would have obsessed over wondering what "might" have happened had I had the surgery.
In my opinion, have the surgery unless you are given medical advice against it.
We don't have any strong anti-thymectomy people on this board any more -- so you may not get those people chiming in with their opinions.
I understand that there is a lot of fear about the operation, but MG is a serious disease. We may look fabulous, but we have a deadly condition and a thymectomy works for people in your exact predicament. Nobody gets to avoid major hospital time, unfortunately. So get it over with now, I say.
You are very recently on the prednisone, and you may need to kick up the dosage a little bit before you start feeling the effects. But give it time. The prednisone can also make you a little crazy -- so just remember that.
Most of us are on a combo of prednisone and an immunosuppressant like imuran or cellcept, which is the standard treatment. You need to monitor your liver functions on the cellcept or imuran, which means lots of fun blood tests! ~Joe