Stanley Schildkraut

After many years with gMG My swallowing has been affected, I can start coughing and not swallowing, mostly uncontrollably.
I’ve spoken to my doctors and I’ve been told chew better, swallow and take smaller bites. Nothing works. It’s an uncomfortable and inconvenient way of
digesting food.
I’ve had problems with my anus, Sphincter and…[Read more]

Be well, if ever you’re in need, I’m  here

Good morning Nan. To start with you’re not unusual or different. Immunosuppressives don’t work for all and those of us they work for have problems with them.
I have a Shiliey port in the upper left side of my chest
It’s above my left pec.
I’ve had trouble with an infection that had my port changed. There’s no pain and instead of 3…[Read more]

I’m an gMG patient foe the last 15-16 years. The physicality exhaustive feeling that I was sure were mental are very much Physical Occurrences.
I live in Brooklyn New York and my place of business was in Lake Ronkonkoma, at best an hour plus drive. I enjoyed my drives to and from work.
My first instance that something was wrong happened while I…[Read more]

I’m an gMG patient foe the last 15-16 years. The physicality exhaustive feeling that I was sure were mental are very much Physical Occurrences.
I live in Brooklyn New York and my place of business was in Lake Ronkonkoma, at best an hour plus drive. I enjoyed my drives to and from work.
My first instance that something was wrong happened while I…[Read more]

Happy New Year, as with us  all its  been a Wild and Crazy Year. I hope 2022 is a more calming 12 months..

I was administered IVIG, once a month thank You! After. After  a shortened 2 years, thousands of complaints to my neurologist I lapsed  in a coma during the first Sunday of April 2014.

Doctors  were told about my disease and treatment. Ever…[Read more]

Good morning Lou, it’s an interesting post. Thank you.
I began IVIG in 2012 or 2013. It almost killed me.
My then neurologist knew not much about MG. Most of them swear they do.
The Shiley port you’re not wearing is an an IV, why go through wearing a port that should be changed, oh you doctor didn’t tell you that?
The easiest and most successful…[Read more]

‘Morning Dave, thanks for your “Tale of Good and Bad” reactions.
I went through IVIG because my neurologist through nepotism was the smartest about everything. He convinced my wife and I his word was MG LAW. I underwent a 5 hour single fiber exam. A needle in my back that did assure my having MG.
I was placed on Prednisone, Pyridostigmine, Paul…[Read more]

My Dear Anne Marie. You’re an old timer. 8 years with an MG diagnosis that’s under controlled.
My diagnosis came in 2012, my path has not been easy. The cocktail of MESTINON and PREDNISONE almost killed me.
IVIG 1 a month, 5 hours of an IV with my Doctor telling me I looking better. April of 2014 until October of 2014 I was comatose, acute…[Read more]

Thanks for the sound of your voice. I’ve found the more often we hear from one another, the better we feel.

I have a Shiley port in my left shoulder. My

 
<p style=”text-align: right;”>veins aren’t bothered be an additional phlebotomist.  I took Prednisone and MESTINON together back in 2012-2014.I swelled had trouble standing, swallowing and…[Read more]

Thank you Tim. I was diagnosed with MG towards the the middle of 2012. Yes I have, to this day trouble swallowing, slurring words, my left eye sags and my general strength wanes on different days.  Yet I consider myself at least 75% more fit today then I was when I was diagnosed.

My medicinal cocktail might not work for everyone, but it is very…[Read more]

Hello Jerry, so glad to hear from you.  Your doing the IVIG at home was presented to me. The experience of nurses led me to say no to homebound treatment.   I took the IVIG for over a year, the one result was I lapsed into a coma April through October 2014. Almost died and my Doctor wanted to continue the IVIG, he told my wife and daughter “G…[Read more]

I am not a VA PROPONENT. At the Brooklyn NY VA almost all MG patients are sent to Private Hospitals.  Very few VA doctors know much about Myasthenia Gravis.

Although bills are paid by the VA, all treatments are done by civilian Doctors.

You’re told your veins are not up to snuff. A Shiley port is placed and your veins are not bothered. Oh yes…[Read more]

<p style=”text-align: right;”>GOD BLESS, I’m not ready for the surgery. Keep me(us) informed</p>

Tim my good man, I’ve a Shiley port that’s in my chest. I’m getting plasmapheresis done once a month. The up feeling lasts about 3 weeks. A sometimes gentle slide after that.

IVIG almost killed me. The doctor ran away. His professed knowledge of Myasthenia Gravis was just that. After a coma and rehab with little or no muscle use in my legs, I…[Read more]

Dear Dave. Thanks.  You did what I did.  Became your own PATIENT ADVOCATE

Doctors are funny, they will write s paper about your experiences with  IVIG. Get it published  someplace and you my friend will be in s box.

You’re alive, you sound like as million dollars.  Thanks for having the guts to stand up.  GOD BLESS

Stanley Schildkraut

Thank you for your posituve feeling of IVIG.
My experiences with it were terrible.
I landed in a hospital in a coma, diagnosed with Acute b respiratory failure.
My wife told them about MYASTHENIA GRAVIS. MY doctor was reached. Not a cool meeting. Plasmapheresis C was started.
I wouldn’t recommend your to anyone. Thank GOD you are alive.…[Read more]

When I was first diagnosed with MG I was at a loss. I didn’t understand what was going on with me.
Not being able to “Do” was very foreign.
I was used to working 8 to 9 hours a day. Driving from Brooklyn to Lake Ronkonkomo.
I watched my friends go to work, enjoy themselves,. I couldn’t.
I resented GOD, having taken from me what I had always…[Read more]