Dr Puscuzzi approved me for my thymectomy when i was in the worst shape of my life..i had no prednisone treatment and has mestinon for the first time 24 hours prior to the sirgery..i seen Robert Pascuzzi onces in the morning and was told to come back at 5 to see any "results". i was so weak, i had to be rolled in with a wheelchair. could not speak well, had total diplapia and total body weakness and he still approved me...needless to say i went into crisis and spend 2 months on the ICU..bad call
There is hope for MG, my son was 6 years old when he got really sick with Myasthenia Gravis, and he had the Thymectomy in 2006 since than he has been ok. Read his story on squidoo.com it's called "Bradley's Myasthenia Gravis", it will give you hope!
My father is currently in the hospital being treated for what started out as an MG breathing crisis 3 months ago. He's been in the hospital since, making frequent trips to ICU, coded twice, and has been intebated 3 times. He's in ICU right now(10-18-10)for a week, and isn't a victim of his MG, but is a victim of crappy doctors. We are trapped at Lourdes Hospital and we cannot afford to send him to somewhere competent like Ochsner in NOLA. The doctors tending to him now are killing him. Help.
@TheMarkNessMonster I feel you about the "crappy doctors".. My mom has been in and out of every hospital around the area, some of them told her it was a stroke, and then her throat closed off so we told the doctors it MIGHT be an allergic reaction to medicine and they were just like "Yep you must be right" then they sent her home. She got worse until she finally collapsed. Now she's intebated at hospital #4 and we get the results back tomorrow that will tell us if it's Myasthenia Gravis.
This was good to hear. And it is true what the Dr said. I have been diagnosed for about 3 and a half years and there was a time that my symptom (double vision) went away, and to this day it is only in my eyes, praise the lord for this informaiton
Thanks for ur modest, informative talk. I've had MG since I was 4, & learnt a lot. PLEASE look N2, & ask other MDs 2 look N2, the drug MYTELASE. It's expensive, but makes me strong. Also (in danger of) bcoming extinct Bcaus not 2 many peopl use it. But it's long lasting & very good. Also...Mestinon BROMIDE gives me much mucus. They used to hav Mestinon CHLORIDE....much better. Pleas ask that it be made again. Thanks 4 infomativ video, & gracious delivery!
I have MG, and am now disabled . I was at the top of my game. Never better. Then one day I started talking like Donald Duck, and choked on tough foods. Wow... this disorder is horrible. I have had all the reccomended treatments. Am somewhat better now. Hopefully I will continue to improve.--poly-oxide solution seemed to do something for my double vision temporally-maybe someone should expand on that- from the Bible "dust to dust"
Also have this. Was diagnosed about 8 weeks ago. First noticed Double Vision then slurring of my speech. Went to Dr. and he found or diagnosed it in a few luckydays. I did have a "Crisis" about two weeks ago and had to be air flighted to a much larger hosp. in NW PA. I was almost DOA due to respiratory failure.
I'm now under controlled meds and seem to be getting well from this last attack but also know this is a controlled disease and no real cure for it. Good Luck. :)
@thekaneguy I've had MG since I was 4, (unusual-- but tru!) I find when I hav enuf energy 2 excercise...I feel a LOT better afterward. (My doctor says excercise s THE best thing 4 any1!) Thers no cure 4 MG...but some lucky peopl hav remissions, (never me...I think I haven't excercised enuf.) I tak an older drug called MYTELASE..very expensiv, but it lasts! Almost normal on it. But I think it ma Bcom extinct soon! But if mor peopl tak it, mayb it won't. Please ask an older Dr. about it. Thanx
can someone with no thymus gland still have MG? i find it diffcult to swallow and talk so my neuro started me with mestinon but my Xray result says i have no thymoma
I'm 15 and i was just diagnosed with MG last week and my right eyelid was droopy. i had double vision often, i had trouble speaking and also swallowing. i take 90 mg of mestinon every 3 hous to keep everything under control.
I would recommend you do some research on using imuran and prednisone for long term treatment. mestinon generally only manages the symptoms. I have ocular and nothing else, don't use mestinon, and am symptom free with imuran. Feel free to ask qns.
WARNING: Long-term use of this medication increases the risk of developing neoplasias (cancerous or noncancerous growths). Azathioprine can also cause blood disorders (e.g., leukopenia). Immediately notify your doctor if you develop unusual growths, easy bruising or bleeding, or signs of infection such as persistent sore throat or fever.
I was diagnosed with MG about a month ago ... and it's really funny because I had it for 6 months and I knew and I was certain that i have it , but I was too scared to go to the hospital... but now i'm face to face with MG
i also have this disease...its mostly in my legs and uper arms my left eye is a little dropy...i am usualy fisicly tierd during school and its embarising...plus i dont have very maney friends so pritty much every one makes fun of me...cuz i sometimes walk weirdly becuz my legs r tierd...but they dont know that. they all just simply think i just simply walk funny...
i tried prednisolone when i was first born and found out im allergic to it...i take some other liquidy thing i forget what its called...but it works pritty well i wish it would just a little better though...
i know how you feel i got mg too and im 17 most of the the time i cant eat or get out of bed by myself its weird cuz i got every thing yall talk about at the same time but its mostly i cant breathe good
I have Lyme disease. This disease is referred to as the "great imitator" as it can mimic many diseases. Myasthenia Gravis is one such disease/illness. Within Lyme circles, we have patients that were diagnosed with MG, ALS, RA, LUPUS, ANOREXIA NERVOSA, CFS, and the list goes on and on. Lyme disease is treatable. Will be happy to email anyone interested a brochure. Just trying to get the word out.
What this Dr. doesn't tell you is why Dr. Tether treated only Myasthenics. Dr. Tether wasn't a neurologist, he was an internist. He only treated myasthenics but he had patients from all over the world that would come to Indianapolis Indiana just to see him. You see, Dr. Tethers first wife had M.G. at a time when treating the disease was not easy.
Dr. Tether retired a number of years ago and has since passed away. I still think about him and I will always love him for what he did for me. The first time I saw Dr. Tether he gave me his home phone number and told me if I ever had any problems I should call him at his home. I only had to do that one time but I was glad that he had given me that number when I needed it.
I was diagnosed with acute fulmanating Myasthenia-Gravis and about a month after I started taking mestinon to treat it I got so bad that the Mestinon stopped working. I later learned that that happens in about 10% of the patients and before they started using Prednisone to treat M.G. those patients usually died pretty quickly. Like within 6 months or so.
I personally saw six different doctors before I was lucky enough to get to Dr. Tether. The last doctor before Tether ran every test you can think of trying to find a brain tumor before he finally gave up and told me about Dr. Tether. Dr. Tether saved my life, I loved the man. I named my second born son after him. I have a very bad form of M.G.
I was diagnosed with M.G. on November 1st. 1972. The doctor that diagnosed me was Dr. J. Edward Tether. The same Tether that first used Tensilon fo diagnose and the same Tether that this man spoke of. Dr. Tether was controversial because so many of the people that went to him was diagnosed with M.G. The reason was that most of these people had already seen every other doctor that they could and none had been able to tell them what was wrong with them.
Dr Puscuzzi approved me for my thymectomy when i was in the worst shape of my life..i had no prednisone treatment and has mestinon for the first time 24 hours prior to the sirgery..i seen Robert Pascuzzi onces in the morning and was told to come back at 5 to see any "results". i was so weak, i had to be rolled in with a wheelchair. could not speak well, had total diplapia and total body weakness and he still approved me...needless to say i went into crisis and spend 2 months on the ICU..bad call
InnaVitamina777 2 months ago
This has been flagged as spam show
There is hope for MG, my son was 6 years old when he got really sick with Myasthenia Gravis, and he had the Thymectomy in 2006 since than he has been ok. Read his story on squidoo.com it's called "Bradley's Myasthenia Gravis", it will give you hope!
ftuley 1 year ago
My father is currently in the hospital being treated for what started out as an MG breathing crisis 3 months ago. He's been in the hospital since, making frequent trips to ICU, coded twice, and has been intebated 3 times. He's in ICU right now(10-18-10)for a week, and isn't a victim of his MG, but is a victim of crappy doctors. We are trapped at Lourdes Hospital and we cannot afford to send him to somewhere competent like Ochsner in NOLA. The doctors tending to him now are killing him. Help.
TheMarkNessMonster 1 year ago
@TheMarkNessMonster I feel you about the "crappy doctors".. My mom has been in and out of every hospital around the area, some of them told her it was a stroke, and then her throat closed off so we told the doctors it MIGHT be an allergic reaction to medicine and they were just like "Yep you must be right" then they sent her home. She got worse until she finally collapsed. Now she's intebated at hospital #4 and we get the results back tomorrow that will tell us if it's Myasthenia Gravis.
adam15ND 1 year ago
This was good to hear. And it is true what the Dr said. I have been diagnosed for about 3 and a half years and there was a time that my symptom (double vision) went away, and to this day it is only in my eyes, praise the lord for this informaiton
sreafuel 1 year ago
Thanks for ur modest, informative talk. I've had MG since I was 4, & learnt a lot. PLEASE look N2, & ask other MDs 2 look N2, the drug MYTELASE. It's expensive, but makes me strong. Also (in danger of) bcoming extinct Bcaus not 2 many peopl use it. But it's long lasting & very good. Also...Mestinon BROMIDE gives me much mucus. They used to hav Mestinon CHLORIDE....much better. Pleas ask that it be made again. Thanks 4 infomativ video, & gracious delivery!
UTAOUB 1 year ago
I fucking hate MG
kortezez 1 year ago
I have MG, and am now disabled . I was at the top of my game. Never better. Then one day I started talking like Donald Duck, and choked on tough foods. Wow... this disorder is horrible. I have had all the reccomended treatments. Am somewhat better now. Hopefully I will continue to improve.--poly-oxide solution seemed to do something for my double vision temporally-maybe someone should expand on that- from the Bible "dust to dust"
44thcustomer 1 year ago
This has been flagged as spam show
Greetings,
Also have this. Was diagnosed about 8 weeks ago. First noticed Double Vision then slurring of my speech. Went to Dr. and he found or diagnosed it in a few luckydays. I did have a "Crisis" about two weeks ago and had to be air flighted to a much larger hosp. in NW PA. I was almost DOA due to respiratory failure.
I'm now under controlled meds and seem to be getting well from this last attack but also know this is a controlled disease and no real cure for it. Good Luck. :)
TheKaneGuy
thekaneguy 2 years ago
@thekaneguy I've had MG since I was 4, (unusual-- but tru!) I find when I hav enuf energy 2 excercise...I feel a LOT better afterward. (My doctor says excercise s THE best thing 4 any1!) Thers no cure 4 MG...but some lucky peopl hav remissions, (never me...I think I haven't excercised enuf.) I tak an older drug called MYTELASE..very expensiv, but it lasts! Almost normal on it. But I think it ma Bcom extinct soon! But if mor peopl tak it, mayb it won't. Please ask an older Dr. about it. Thanx
UTAOUB 1 year ago
I had tymectomy 5 years ago, after that, I feel almost normal, my question is what is better mestinon or imuran ? I feel tired very often.
marisela1727 2 years ago
I have this condition. I say condition because I hate the word DISEASE . it is so outdated .
rambohs 2 years ago
disease sounds bad i know but it just means dis-ease meaning u are [not at ease] so thats why so many things are a desease,
gewizz2 2 years ago
can someone with no thymus gland still have MG? i find it diffcult to swallow and talk so my neuro started me with mestinon but my Xray result says i have no thymoma
togepi29 2 years ago
I'm 15 and i was just diagnosed with MG last week and my right eyelid was droopy. i had double vision often, i had trouble speaking and also swallowing. i take 90 mg of mestinon every 3 hous to keep everything under control.
LiiVEiiTUp526 2 years ago
I would recommend you do some research on using imuran and prednisone for long term treatment. mestinon generally only manages the symptoms. I have ocular and nothing else, don't use mestinon, and am symptom free with imuran. Feel free to ask qns.
pal722000 2 years ago
My doctor just convinced me to try imuran. I hope I am as lucky as you.
aponce16 2 years ago
WARNING: Long-term use of this medication increases the risk of developing neoplasias (cancerous or noncancerous growths). Azathioprine can also cause blood disorders (e.g., leukopenia). Immediately notify your doctor if you develop unusual growths, easy bruising or bleeding, or signs of infection such as persistent sore throat or fever.
merdem12 2 years ago
wow you guys are amazing.
personally i dont have MG but i'm a physical therapist in my country (philippines) and had my share of patients with MG
i really feel for you guys and i'll try my best to do my part to make you guys better...
wildknight05 2 years ago
i was born with it ,i take pyridostigmine and ephedrine
90876589 2 years ago
Comment removed
90876589 2 years ago
I was diagnosed with MG about a month ago ... and it's really funny because I had it for 6 months and I knew and I was certain that i have it , but I was too scared to go to the hospital... but now i'm face to face with MG
maryami69 2 years ago
i also have this disease...its mostly in my legs and uper arms my left eye is a little dropy...i am usualy fisicly tierd during school and its embarising...plus i dont have very maney friends so pritty much every one makes fun of me...cuz i sometimes walk weirdly becuz my legs r tierd...but they dont know that. they all just simply think i just simply walk funny...
fireshadow2000 2 years ago
you broke my heart :(
I have it too ... it's mostly affecting my lips and tounge and ppl think that i'm sad because i'm unable to smile sometimes
you didn't take prednisolone and mestinon ??? it's suppose to help you walking normally
maryami69 2 years ago
i tried prednisolone when i was first born and found out im allergic to it...i take some other liquidy thing i forget what its called...but it works pritty well i wish it would just a little better though...
fireshadow2000 2 years ago
what kind of allergy ??? like coughing?
maryami69 2 years ago
i get rashes
fireshadow2000 2 years ago
ah ok ... i'm really suffering
i'm tiered all the time and I feel that it's unfair cuz i'm still 17 and suppose to be active :'(
maryami69 2 years ago
i know how you feel i got mg too and im 17 most of the the time i cant eat or get out of bed by myself its weird cuz i got every thing yall talk about at the same time but its mostly i cant breathe good
kross1802 2 years ago
ok ... are you male or female ... we can communicate more if you like to ... we can share alot of things
maryami69 2 years ago
P.I.M.P OF NEUROLOGY !
DRRxetc 3 years ago
I have Lyme disease. This disease is referred to as the "great imitator" as it can mimic many diseases. Myasthenia Gravis is one such disease/illness. Within Lyme circles, we have patients that were diagnosed with MG, ALS, RA, LUPUS, ANOREXIA NERVOSA, CFS, and the list goes on and on. Lyme disease is treatable. Will be happy to email anyone interested a brochure. Just trying to get the word out.
God Bless
ecftube 3 years ago
I am sorry. It appears I can not post any more. you have to read these posts in reverse to understand them.
Bye Bye
nestles67 4 years ago
lol. noob
yudiputay 3 years ago
What this Dr. doesn't tell you is why Dr. Tether treated only Myasthenics. Dr. Tether wasn't a neurologist, he was an internist. He only treated myasthenics but he had patients from all over the world that would come to Indianapolis Indiana just to see him. You see, Dr. Tethers first wife had M.G. at a time when treating the disease was not easy.
nestles67 4 years ago
Dr. Tether retired a number of years ago and has since passed away. I still think about him and I will always love him for what he did for me. The first time I saw Dr. Tether he gave me his home phone number and told me if I ever had any problems I should call him at his home. I only had to do that one time but I was glad that he had given me that number when I needed it.
nestles67 4 years ago
I was diagnosed with acute fulmanating Myasthenia-Gravis and about a month after I started taking mestinon to treat it I got so bad that the Mestinon stopped working. I later learned that that happens in about 10% of the patients and before they started using Prednisone to treat M.G. those patients usually died pretty quickly. Like within 6 months or so.
nestles67 4 years ago
I personally saw six different doctors before I was lucky enough to get to Dr. Tether. The last doctor before Tether ran every test you can think of trying to find a brain tumor before he finally gave up and told me about Dr. Tether. Dr. Tether saved my life, I loved the man. I named my second born son after him. I have a very bad form of M.G.
nestles67 4 years ago
hahahaha ok ....
what is the treatment he gave you ?
and how long did it take to make you get back to normal ?
I was diagnosed about one month ago and i'm on mestinon and prednisolone it seems to be working very well !
maryami69 2 years ago
I was diagnosed with M.G. on November 1st. 1972. The doctor that diagnosed me was Dr. J. Edward Tether. The same Tether that first used Tensilon fo diagnose and the same Tether that this man spoke of. Dr. Tether was controversial because so many of the people that went to him was diagnosed with M.G. The reason was that most of these people had already seen every other doctor that they could and none had been able to tell them what was wrong with them.
nestles67 4 years ago
Very informative! That neurologist is a pretty entertaining guy, too.
ShellDockly 4 years ago
Very good start.
dogleg4 5 years ago
Thanks, please subscribe!
agitcam 5 years ago