Diagnosing was just as problematic as Living with Myasthenia Gravis , just like the Dandelion. I pluck from my garden ,they disappear momentarily and reappear, in another place only to remind me ,I need to keep and give attention to make sure it don't kill ,steal or destroy whatever maintenance necessary to stay vibrant and healthy from day to day ,Myasthenia Gravis affect every part of me ,even affecting other conditions. It's a Challenge that I choose to RENAME , Manage . Whenever a symptom appear, I Manage to recognize it, as a weed in my garden, that need attention and occasionally prevention from triggering factors that could cause a Myasthenia Gravis Crisis .My treatment and diagnosis ,EMG ,TENSILON TEST ,ANTIBODY TESTING ,PSYHCOTHERAPHY ,ANTI REJECTION MEDS ,MESTINON,PLASMAPHERESIS ,IVIG ,RITUXIN ,PREDISONE AND A THYMECTOMY ,and yes I have Myasthenia Gravis ,it is my Dandelion my Life
Myasthenia Gravis ,My Dandelion ,My Life - Myasthenia Gravis...
Myasthenia Gravis ,My Dandelion ,My Life
You do seem to have problems. In my opinion it really should not be so problematic. Admittedly it took me 9 month on and off of reading until I eventually was able to diagnose the problem, without any tests. Eventually, once I had done the so called NHS finally agreed I may be right and started testing for that and found it was. The neurologist then went against my thoughts on treatment by prescribing much too high a dose of steroids which pushed my wife into a crisis and was rushed to hospital. She ended up on a feeding tube which couldn't be used as they hadn't inserted it right until the third try, so she was initially without food or liquids until they got her on a drip. She thought she was dying and wanted to. Eventually the tube was fitted right and could be fed by tube. They reduced the meds closer to what I'd said initially and added mestinon which I'd also told the neurologist before he disagreed and put her on massive steroids straight off. She's much better now and reducing the steroids gradually. It does cause problems with blood sugars as type 2 diabetic but again they are being controlled so all OK currently. Let's all clap for the NHS, I don't think so,not when so many mistakes are made that could kill people. I know some can save lives but we were very lucky when none of our problems need have happened if neurologists and others weren't treated like gods.
Yes you are so right ,I felt that I was being tortured ,so many test and interventions ,until I took the Tensilon Test,it was simple and it was not painful after all of the tests and procedures ,I found an article in a magazine ,I read a story of someone who had my symptoms ,they only took the Tensilon Test and was diagnosed ,I mentioned it to my Doctor ,he gave me that test and it was positive ,I was glad he had a diagnosis ,however I was very angry ,he never entertained the idea until ,I mentioned it ,this is a very Touchy subject for me ,if you read my post ,I know you can see why, taking 10mg Prednisone ,works well ,no crisis for many years now ,it is under my control .Thank you so much for your post .It was very helpful and gave me a chance to deal with feelings ,no one knew I continue to experience .Sending ,peace ,love and joy to you .
I can identify with your comments. I have an Interstital lung disease also auto immune problems.
One big problem I have is my consultant tell img me to increase my steroid s from 10/60 mgm steroid daily.
They then want me to go back down to 10 mgm daily within 2 weeks.
After 4 years I’ve learnt to work it out for myself .
But it’s very hard at times.I can not go to the local drop in centre, due to me being complex they want to send me to AnE.
They do t have knowledge of my conditions so a long wait .followed by going home no wiser so continuing to paddle my own canoe. So to speak . Im sorry to intrude on your forum, I was doing research for a neighbours
NO INTRUDING. I WELCOME YOUR RESPONSE TO THE REALIZATION OF REALLY, REALITY,AND VERY REAL LIFE AND LIVING WITH MYASTHENIA GRAVIS .I THANK YOU FOR KEEPING THE FORUM ALIVE, AS WE STRIVE, TO SURVIVE
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