Myasthenia Gravis

[lera]

hi,I'm a 23 year old and was diagnosed with mg when I was around 20 bout three years ago, I've been on predisone,and mestinone eversince,I had a thymectomy a year ago and Ive undergone a plasma exchange just before the operation, Nevertheless I still get the symptoms every now and then, and honestly its really depressing bieng my age and feeling 50..coz you are constantly dnt have energy to do stuff, I am varsity student and its tuff bieng tired all the time feeling drowsy when you supposed to study,cant go dancing or clubbing much coz my legs get tired and weak after a couple of dances, I just want to kno if there someone out there who is about my age who has the mg and can relate to me,coz I have 2 doctors one at school and at home for when i go on vac,but both of them only have me as a patient with mg my age,the pther concern is that I have gained a lot of weight over the years and I feel that it is very unhealthy and will only make my condition worse,has any got advise on other medication I could use,I tried azapress but it gave me an infection, how good is creatine

[karandi]

Hi - I offer my experiences just in case it may help. A lot older than you at 72 I first had an attack of the symptoms in November 2003 which is when I was diagnosed. This initial attack was overcome with medication which continued with a daily dosage of pyrodostigmine and prednisolone..
In November 2004 I suffered another attack (double vision, paralasis of my face muscles and arms, neck etc. Again solved with increased medication.
In November 2005 another attack but this time as well as the usual symptoms my respiratory system began to deteriorate - couldn't breath and was rushed into Casualty on the verge of respiratory failure, for imunoglobin replacement. Five days treatment and I was back to normal.
In November 2006 again another attack of very severe paralisis of my facial muscles so I couldn't eat or drink. Again hospitalised for imunoglobin replacement and again discharged after 5 days.
In July 2007 I pleaded with my Doctors to stop the medication as the Pyrodostigmine caused severe Bowel and Bladder incontinence coupled with diarrhoea (not a pleasant combination) and the Prednisplone caused Insomnia and a loss of my sense of taste and also worsened my Diabetis. The medication was far worse than the M.G.
All my Doctors confessed to there being not much known about this relitavely new and unknown illness. In the U.K there are only 6000 people with M.G. So I decided to carry out my own investigation. I have always kept a diary of my Health and first of all I was convinced that the onset of my M.G. was caused by the sudden and unexpected death of my wife of 50 years in 2003 which I now recognise caused me to have some kind of breakdown and I believe I was in some kind of shock for some weeks
More importantly - when reading through my diary - I identified that every attack of the symptoms occurred ten to 14 days after my usual Autumn anti Flu vaccination. So in the Autumn of 2007 I did not have my usual annual flu vaccination and so I have been free of the symptoms now for 17 months.
I also feel that the increase in the M.G. medication which caused Insomnia etc. although stopped in the middle of 2007 has not allowed me to return to the levels of health I enjoyed before the Prednisolone and Pyrodostigmine began.
Fortunately I am currently free of any M.G. symptoms but suspect that damage has been done to my Physiology by the prescribed M.G. medication. My sense of taste has not fully returned, my Diabetis has not recovered to what it used to be and I still suffer from Insomnia.
Hope this helps ?
Regards
Ken Robinson (U.K.)

[liddyann]

Ken,
I agree with mg onset being stress related. After being diagnosed 4 years ago, I believe I've had symptoms since I was a teenaager (I'm 37 now), but things escalated with alot of stressful situations in a short time. My neurologist sees a couple of new cases a month!! He told me last month that I'm the worst case he's seen. He is weaning me off prednisone, so in a couple of months I can have a thymectomy. I have IVIG once a month, but it just doesn't seem to hold out.

[phillipsd]

HI MY DAUGHTER WAS JUST DIAGNOSED WITH MG LAST WEAK AND SHE IS ONLY 17 YEARS OLD. WE HAVE JUST STARTED MEDS AND WE ARE WAITING TO DO A CAT ON HER BREAST BONE TO CHECK HER THYMUS. I WORRY ABOUT HER HAVING A "NORMAL" LIVE SHE WILL BE SENOIR N HIGH SCHOOL NEXT YEAR AND SHE ENJOYS SPORTS BUT AT THIS POINT IT IS ALL UP IN THE AIR. SO DO HAVE ANY WORDS OF WISDOM.

JUNEBUG

[lera]

hi
I live a normal life its just that I get tired more often more than anybody else. One thing I can say is that she must try to fight the tiredness or it will control her. She must continue doing a bit of sport,push herself but be careful not to overdo it, I found the best way to be in remision is to have a plasma exchange, And when you are in remission you feel absolutely normal. Just try to be strong, At times it can be fustrating when everyone thinks you are lazy or doesnt really understand how you feel but just know that there are worse deseases in life
\
Good luck and be strong
Lera

[amm34]

I was diagnosed during my 2nd year of medical school/ dental school, as well as being in the Army. As you can imagine I had to be physically fit for military, very reliant on my vision, esp for dental work, and under enormous amount of stress. Mine presented with ptosis and a declining respiratory function, but later all the rest came. I was very against prednisone, so I started cellcept. There is controversy over this drug, but it has the fewest side effects, so I was willing to try it. I have been on it for 9 mos, with mestinon (60mg) every 2 hrs. It did improve my respiratory function, but I got to the point where i only had dbl vision. Tell your daughter, you will adapt! I was scared to death about functioning in medical school with all the reading, but your brain figures it out. My dbl vision was horizontal so my tipping my head I could shift it to vertical and read..... when at home, patching an eye can help. Regarding physical activity I recently started IVIg, which is my miracle. I was struggling to do 10 push-ups and run 1 mi before (I previously could do a lot more), but after IVIG I had increased my exercise tolerance 70% and am continuing. Functionally the IVIg but me into remission. I still have to have it once a month and still take 2g of cellcept/day, but I have decreased my dependency on mestinon. Chances are my vision will never totally improve, but it has to some degree, and I purchased medical loupes that allow you to change the interpupillary distance to aid in vision- they are a God sent. All in all, I have managed to keep it a secret from my school, and I have learned I have to be flexible. I feel like I can lead a normal life with some adaptation and a little humility. I would certainly recommend IvIg as it has so few side effects and works marvelously. For a senior in hs, drug side effects are huge, and I have taken the route of minimizing them, against medical advice (ie- no prednisone), which has worked. Find a neurologist that is willing to work with her and be flexible and see and respect her priorities. Treat it early so she will be able to lead a normal life. Good luck!

[melkov]

I was also diagnosed at age 20. I understand what you are going through with the weight thing and losing everything that should be taken for granted when you are young. It sucks. When it happened to me I left the country and ran away from all the doctors and parents suffocating me. I got lucky and had a remission that lasted almost 7 years. Getting through this is all in the attitude. Don't let anyone tell you what you can and cannot do. Find something that makes you happy and listen to no one that gets in your way. I am 54- that's 34 years living with MG. If I had listened to all the negative people in my life, I would not be married with two grown children and a successful career. Don't let the MG mess up your life. It would be like staying home from a great party because you have a zit on your nose. Be well.

[REL]

I'm 18 and just recently got diagnosed although I've had severe symptoms since I was 7 (unusual, I know) - the doctors were shocked when they got the blood work results since it was very much a shot in the dark. Anyway, I'm now a sophomore in college at a relatively small, mostly military university. It's kind of nice that I can't remember being "normal", because it makes it easier to adapt. With that said, just continue to do what you can for as long as you can, when you can, and if and when that becomes no longer an option, you just have to find something else to bring to the table. I'm known at my school (I stand out in a crowd for more reasons than one) for being entertaining and funny, and although I can't keep up on a walk or go out and play sports, people seek me out for laughs. Don't focus on the negative. And although my friend commented that clouds looked more gold to her than silver, there's always some sort of precious-metal lining to every cloud (how they don't fall down, I will never understand).

[lera]

thanks for all the support,its shoking I thought I was the only one out there,i've neva seen someone who has this disease,nevathe less, varity is gng a bit better,nowadays i push my self to the limit,i walk until i'm outa breath before i give in to the weakness,,jus a question though my dr recommended that i exercise alot,i try,but the real thing that gets me down more than anything is the breathing,the breathing jus becomes so heavy en I get this burn in my chest, and at that stage I culd still be running a mile,i'm i putting myself in danger by putting my chest under so much pressure,or is gud en healthy to feel this chest burn.

[liddyann]

I stop when I can't catch my breath. As with the other muscles, rest helps them to come around. When I've had trouble breathing, no matter what, I stop...even if I'm just walking across the room. It is way to scary to not be able to breathe!! Do not over-do...you know your body the best, just listen to it.