I went into crasis for over three years i was struggling with mutiple of symptoms. As i speak I'm yet to be diagnosed. I had to check on Google to know what is wrong with me. It's only by the grace of God I'm still alive.
Thank you. I had the best neurologist dr Levin in Mesa AZ. I was a textbook when I went to see him. I had double vison, couldn’t talk, eat,. I had IVIG and later Solris infusions, and right now I’m doing great. Thank you Dr Severstein
I was diagnosed a little less than 2 years ago. It started with the eyes. I had a thymectomy to remove the thymoma which hasn’t put me in remission, or reduced the medicines or symptoms. It’s continued to get worse and increase meds. I’ve gone through plasma exchange and IVIG several times, most recently when I had a myasthenia crisis, was on life support and stayed in the hospital for a month with collapsed lungs and aspiration pneumonia. Now, I’m getting ready for my 3rd rituximab infusion but my body is still completely broken. The steroids have messed up my bones, given me diabetes and now on insulin. This disorder has reduced me to my lowest terms and I’m losing everything because I can no longer work and make a living for myself as I have always done. Watching this lets me know that my doctor should have gone the route of VYVGART, Ultomiris, or Solaris 😢
Thank you for this extensive, yet understandable explanation of the varying treatments for MG. It’s the most complete and clear summation I have encountered. Frustrating to discover that I could have had a thymectomy 40 years ago, yet it was never seriously presented to me or discussed by my neurologists (at a major teaching hospital) at a time in my life when if would have been optimal. I especially appreciate your comparisons of the various modalities and their associated side effects and treatment timelines. Kudos as well for the embedded captions - so much better than trying to follow a transcript created with inaccurate speech recognition programs.
Wow, I've watched 20 TH-cam videos on MG and this is best yet. I have NOT been formally diagnosed yet, but MG sure seems close to my experience thus: As 66 year old make, a year ago I started with only a periods of Hoarseness (dysphonia) every afternoon for a week or so, then it would go away for a month, and come back for a week or two. Then 5 months ago, after being exhausted from yardwork outside, the very next morining I had minor numbness/tingling in both feet, weak legs, both legs and imbalance, and weeks of hyptic jerks (leg muscle spasms) lasting 2 seconds, one leg or the other, every 20 seconds for about 30 minutes as I was falling asleep. Today, the hoarseness still comes and goes, the hypnic jerks are only weekly and more mild, but legs are weak e.g. need a railing to climb flight of stairs and mild feet tingling. Two recent MRIs indicate no Sciatica, no Stenosis. What I mentioned are (so far) the ONLY symptoms. In some 5 months my imbalanced walking (shuffling really) with weak rubber legs is just as severe as the day I awoke with this -- not worse and not better. No antibody blood tests yet. More MRIs planned, but MG seems best match so far.
Thank you for such a complete and easy to understand coverage of MG. I was diagnosed in my 20s, but probably had it before then (looking back). The diagnosis was 35+ years ago and because I was seronegative, my neurologists have been hesitant to do much more than pyridostigmine or neostigmine. The main question is always: do we treat for antibodies? Then, 20 years ago I developed CRPS. It's difficult to find anyone who will treat both, but I was successful, at least temporarily. After this very brave and knowledgeable anesthesiologist as a Pain Management doctor, and CRPS pioneer, she retired leaving me to retired life that has been tortuous. The new Pain Dr. refuses to go very far to treat pain, so the stress from the pain triggers MG symptoms. That means the Pain Dr wants to push me over to my neurologist who has not been treating CRPS. Your discussion will be useful in bringing the specialists together. Thank you again for making things so clear and accessible.
thank you for making this video. but i am confused on one thing. And i have not got any direct answer to this. i had thymoma cancer. it was removed. 2 years later. i got MG. so the theory on the thymas gland being removed and 70% less to get issues. Seems im one of a kind on this.
Would love it when blurry vision and eye jitter are recognized by MD.commonly mentioned in support group but never by MD. Also only heard from my MD that mestinon is used in 'lots of NMD ' so being triple sero neg and being strong responder to mestinon means nothing. I still would love to regain more of lost function but with evidence based only treatment and being sero neg I am doomed to spend the rest of my life at 25% what I used to be grateful to have even the little SSDI gives.
Hello sir , I am 34 yrs old and recently diagnosed with Occular MG. My one eye has ptosis. I am on gravitor 60 from last week. Can i have normal eyes (in size and shape ) and a normal life ? What are reversal rates of ptosis in MG ? My diplopia has improved is no time .. but i still don't see any changes in ptosis My neurologist said this medicine will open your affected eye completely.
My brother was diagnosed with this and it's getting bad!! The health care system for neurological can't get him till u don't know when!! Its bad he can't even swallow!! I'm saying it's bad!! We need help!!
I have double vision for about a year now with no other symptoms of MG. My doctor has prescribed 'Gravitor' 60mg thrice daily. No change in my status... is it normal. How
I went into crasis for over three years i was struggling with mutiple of symptoms. As i speak I'm yet to be diagnosed. I had to check on Google to know what is wrong with me. It's only by the grace of God I'm still alive.
Sorry to hear you're going through so much. If you'd like to inquire about scheduling, please reach out to us via our website using Klara.
I'm yet to be diagnosed. Don't give up
I’m going through the same thing, hopefully will get diagnosed soon. Just glad I know what it is now and it can be treated
Thank you. I had the best neurologist dr Levin in Mesa AZ. I was a textbook when I went to see him. I had double vison, couldn’t talk, eat,. I had IVIG and later Solris infusions, and right now I’m doing great. Thank you Dr Severstein
Happy to hear you are doing well!!
I am new on this site and only diagnosed one year ago. Thank you
I was diagnosed a little less than 2 years ago. It started with the eyes. I had a thymectomy to remove the thymoma which hasn’t put me in remission, or reduced the medicines or symptoms. It’s continued to get worse and increase meds. I’ve gone through plasma exchange and IVIG several times, most recently when I had a myasthenia crisis, was on life support and stayed in the hospital for a month with collapsed lungs and aspiration pneumonia. Now, I’m getting ready for my 3rd rituximab infusion but my body is still completely broken. The steroids have messed up my bones, given me diabetes and now on insulin. This disorder has reduced me to my lowest terms and I’m losing everything because I can no longer work and make a living for myself as I have always done. Watching this lets me know that my doctor should have gone the route of VYVGART, Ultomiris, or Solaris 😢
❤🩹❤🩹❤🩹
Thank you for this extensive, yet understandable explanation of the varying treatments for MG. It’s the most complete and clear summation I have encountered. Frustrating to discover that I could have had a thymectomy 40 years ago, yet it was never seriously presented to me or discussed by my neurologists (at a major teaching hospital) at a time in my life when if would have been optimal. I especially appreciate your comparisons of the various modalities and their associated side effects and treatment timelines. Kudos as well for the embedded captions - so much better than trying to follow a transcript created with inaccurate speech recognition programs.
You're welcome. We are glad you found it helpful.
It seems to be a trial and guess game. How much does all this cost the patient s?
Wow, I've watched 20 TH-cam videos on MG and this is best yet. I have NOT been formally diagnosed yet, but MG sure seems close to my experience thus: As 66 year old make, a year ago I started with only a periods of Hoarseness (dysphonia) every afternoon for a week or so, then it would go away for a month, and come back for a week or two. Then 5 months ago, after being exhausted from yardwork outside, the very next morining I had minor numbness/tingling in both feet, weak legs, both legs and imbalance, and weeks of hyptic jerks (leg muscle spasms) lasting 2 seconds, one leg or the other, every 20 seconds for about 30 minutes as I was falling asleep. Today, the hoarseness still comes and goes, the hypnic jerks are only weekly and more mild, but legs are weak e.g. need a railing to climb flight of stairs and mild feet tingling. Two recent MRIs indicate no Sciatica, no Stenosis. What I mentioned are (so far) the ONLY symptoms. In some 5 months my imbalanced walking (shuffling really) with weak rubber legs is just as severe as the day I awoke with this -- not worse and not better. No antibody blood tests yet. More MRIs planned, but MG seems best match so far.
Great video on MG. Thank you so much sir for your very clear explanation about Myasthenia Gravis.
You're welcome.
Thank you for such a complete and easy to understand coverage of MG. I was diagnosed in my 20s, but probably had it before then (looking back). The diagnosis was 35+ years ago and because I was seronegative, my neurologists have been hesitant to do much more than pyridostigmine or neostigmine. The main question is always: do we treat for antibodies? Then, 20 years ago I developed CRPS. It's difficult to find anyone who will treat both, but I was successful, at least temporarily. After this very brave and knowledgeable anesthesiologist as a Pain Management doctor, and CRPS pioneer, she retired leaving me to retired life that has been tortuous. The new Pain Dr. refuses to go very far to treat pain, so the stress from the pain triggers MG symptoms. That means the Pain Dr wants to push me over to my neurologist who has not been treating CRPS. Your discussion will be useful in bringing the specialists together.
Thank you again for making things so clear and accessible.
You're welcome. Sorry to hear you've had to go through all that.
excellent video, thank youi
you're welcome
Wonderful explanation.
Thank you.
you're welcome
Great talk Dr.
Great video, Thank you!
How fast can a critical situation requiring Intubation come on when you have Myasthenia Gravis
This is so very helpful!! Thank You!!!
You're welcome!
Very little study on the MG Neuropsychological symptoms. It's true.
Thank you.
You're welcome
thank you for making this video. but i am confused on one thing. And i have not got any direct answer to this. i had thymoma cancer. it was removed. 2 years later. i got MG. so the theory on the thymas gland being removed and 70% less to get issues. Seems im one of a kind on this.
Would love it when blurry vision and eye jitter are recognized by MD.commonly mentioned in support group but never by MD. Also only heard from my MD that mestinon is used in 'lots of NMD ' so being triple sero neg and being strong responder to mestinon means nothing. I still would love to regain more of lost function but with evidence based only treatment and being sero neg I am doomed to spend the rest of my life at 25% what I used to be grateful to have even the little SSDI gives.
Hello sir , I am 34 yrs old and recently diagnosed with Occular MG.
My one eye has ptosis. I am on gravitor 60 from last week.
Can i have normal eyes (in size and shape ) and a normal life ?
What are reversal rates of ptosis in MG ?
My diplopia has improved is no time .. but i still don't see any changes in ptosis
My neurologist said this medicine will open your affected eye completely.
More then a month ago. I have been diagnosed with MG.
❤🩹❤🩹❤🩹
Hi is there a support site in uk
I had stroke and most problem is right side double vision quality of life effected the rest i deal with
Sorry you're going through that.
Lupus and Sjorens and Fibromyalgia and MGD and Myasthenia Gravis ❤ pray for me
My brother was diagnosed with this and it's getting bad!! The health care system for neurological can't get him till u don't know when!! Its bad he can't even swallow!! I'm saying it's bad!! We need help!!
Go to ER
@@reneegardner1742 Right on to that advice!
Does that top part say EDs & PoTS? I have those too. 😬
Yes, it does
I have both as well. Is MG seen at a higher rate for those with EDS or Pots?@@centerforcomplexneurology
I have double vision for about a year now with no other symptoms of MG. My doctor has prescribed 'Gravitor' 60mg thrice daily. No change in my status... is it normal. How
Sorry to hear you're going through that. Unfortunately, without seeing you in our office, we wouldn't be able to tell you.
Yhaks for sympathy do you think a Nerudoctor can help or eye doctor