I can't help but think a pre-treatment in the form of Plasmapheresis (or something similar) might actually prolong the efficacy of this drug in the system...
gMG is such an insidious disease. It robs you of many of the things that you used to be able to do without a second thought. If you're unlucky enough to be diagnosed with this rare condition, make sure that your treatment plan includes mental health help.
I have generalized myasthenia gravis: diaphragm respiratory muscles breathing problems; swallowing difficulties, extreme walking difficulties and leg weakness... blurring eyed tiredness, I'm on IVIG Gammagard Liquid plasma every two weeks; nurse comes to my home to infusion treatment - I have an gastric feeding tube implanted in my belly, I'm on pyridostigmine tablets... cellcept, prednisone. My neurologist wants me on Vyvgart - my fatigue is extreme also, I use a c-pap machine to help in breathing.
Itʻs effective but not long lasting. I am scheduled to do my 4th cycle but almost everyone who has been on it needs it by their 50th day. What happened to it working on the FC receptor and reducing the Achr antibodies even more? For many feels like our bodies have a rebound effect regardless. I hope Argenx is finishing up on the subcutaneous version soon.
How is this medication in comparison to Mestinon? (I am Not a Fan of approved medication by the FDA, because they approve based off how their pockets will be “fatten”. Therefore I need to know how it works compared to other MG medications that are out already?
@@Snarkapotamus well their are books, that you may not have access to anymore. But look at the “Dallas Buyer Club” and “Dopesick” old and current doc unified.
When I switched from Soliris by my 4th infusion of Vyvgargt all of my symptoms were way worse. My doctor immediately switched me back to Soliris and IVIG. It took 6-9 months to get back to close to where I was before I switched. From what I've heard from my infusion nurses, none of their patients who had switched has seen any improvement changing to Vyvgargt and most had reactions similar to myself. I pray that anyone with MG finds something that makes their lives more pleasant. 🙏
Hello everyone, I’m here to share my great testimony on how I got cured of my type 2 diabetes disease with the natural herbal medication I ordered from Dr Igudia on his RU-vid channel
Watch droopy eyelids +++ disappear in 2 min. w/high oxygen - see Anna’s unbelievable results - Link to York Region Media news article on breathing www.yorkregion.com/news-story/7975109-how-to-lose-weight-gain-health-just-breathe-markham-man-says/ Link to Annas’ video: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-DEbhh7jhvIk.html Try this with your family. To make this breathing as efficient as possible - start this way. Stand up - place right hand on stomach - place index finger of left hand under nose (just touching, this doubles velocity of inhalation) - “whistle” out air in lungs for three seconds - immediately inhale deeply thru nose - hold for 5 to 10 seconds (10 if you can) - drop hands to your sides and shut your eyes - count 10 seconds. Repeat three times. If sensations are strong, stop, wait an hour and repeat. Increased oxygen intake will almost immediately boost blood circulation causing sensations all over. This is the beginning of improvement in health you will find very surprising. This is a very mild version of a high-oxygen breath but you will still get results in a few minutes. About 15 breaths must be done each day to maintain a 97% blood oxygen level. You can do one or two at a time while driving, reading, working etc. Your results will be just as amazing as all the people above. If you want to take this much further and more efficiently I am available 24/7 - Bill Allen - 905 642-2689 Info@wholesalehousing.ca
The following information is free and may be of great interest to those suffering from Myasthenia. Please see story online “york region bill allen”. When my newspaper story came out online Dec. 6th., I received a call from Anna Abramian who has two cancerous tumours in her breasts, and has Myasthenia Gravis (a muscular disorder). She had started chemotherapy in late Nov., and came to my office on Dec. 8th. With only three high oxygen breaths she got the following relief from Myasthenia symptoms: - her partially paralyzed jaw, tongue and mouth loosened up. - her double vision became crystal clear and droopy eyelids disappeared. - strength, feeling and blood circulation returned to her arms and legs. You cannot imagine the shock and relief she went through. She continues the breathing routine to this date. The blood circulation improved all over her body, from a little extra oxygen and as of this date she estimates that her Myasthenia has improved 70%. The next time she went for her chemotherapy almost all of the usual side effects: nausea, vomiting, sores in mouth and nose, numbness, cramps, pain, paralysis; didn’t occur. Nov. 28th. - 1st. chemo - Lg. tumour 42 sq. cm., sm. tumour - size of finger tip Dec. 19th. - 2nd. chemo Jan. 8th. - 3rd. chemo - Anna lost 6 ½ lbs., tumour 1/3 the size (14 sq. cm.) Jan. 29th. - 4th. chemo - Anna has lost 9 lbs.- Lg. tumour now 8 sq. cm. - Oncologist exclaimed “Wow” - said he had never seen anything like this. This date Oxygen 100%, heart rate 78, blood pressure 117/78 (her B/P was 177/110 in late Nov.) Anna started her next series of chemo this date - Jan. 29th. - The nurse said to expect her finger nails to turn black and her hands would have to be put in ice water for 20 minutes. It wasn’t necessary. Anna has had little or no side effects. Feb. 16th. Tumour is now 1.25 sq. cm - 97% reduction in lg. tumour in 12 wks. small tumour gone - has lost about 17 lbs. Feb. 19th. 5th. chemo - almost no side effects I would be glad to demonstrate over the phone, how you can take these simple breaths that add 10 times the oxygen to your blood and we will see if you get the same results as Anna. Please call me - again it’s free. Bill Allen Info@wholesalehousing.ca Tel. 905 642-2689
Hi, Here is what worked for me. It is worth a try. I have MG and it started in 2012. I am taking Mestion. My symptoms started to go away after I started a vegan diet and after four months I am now 95% symptom free. I had most of the symptoms as you. Info on autoimmune disorders can be found in the book The China Study. I also improved other health parameters as weight loss, cholesterol down 40 pts, BP down to 110/60. This is a life style change but eliminating animal protein from my diet was essential to my recovery. There are no bad side effects with the change to vegan diet. Be sure to take a B12 supplement. There is a lot of info online about whole food plant based (vegan) diets. See Nutritionfacts.org and DrMacdougall.com Animal protein is the culprit in auto immune disorders.
@@ethelakpeneannor9866 There are many sources online about whole food plant-based diets. One needs to go to this lifestyle for 3-4 months to see the benefits. Good Luck
I was diagnosis with MG in California when I was 19 after being hospitalized in ICU. After I had my daughter I had trouble breathing, my muscles lock up, I would be sitting watching TV or talking and I would start gasping for air, I noticed my eye would start wondering, as i talked my speech would start to slur, I also started having trouble opening and carrying things. When my daughter was 5mos I couldn't carry her and she was a small baby. Since my hospitalization at 19 I was told I was born with MG and that my pregnancy trigger it and for whatever reason it was aggressively attacking my body. A doctor also told me i wouldnt live to see 25(now I'm 32!). I had been in and out of ICUs and CCUs for 2 to 3months at a time. A group of doctors looking over all my medical records told me that since my pregnancy trigger my MG that it wouldn't be safe for me to have another child. That my body couldn't take it and that my child would be healthy and safe but I may not recover. I dont know of any MG organization in St. Louis, MO. So I dont really have anyone to talk to and understand all that is going on with MG. I really enjoyed this video very much. I see a little of myself in all people who shared their MG experience. ~Nina
+ninapop821 Nina, we are the Myasthenia Gravis Association of Missouri and Kansas - we have a support group in St. Louis. Give us a call at 816-256-4100 so we can introduce ourselves and let you know the services we provide and get on our mailing list for newsletters and meeting flyers. We have a St. Louis support group meeting coming up on April 16, 2016. Anne Strader
@Andearea hello, I have mg as well and what your describing may not be mg. when i was very symptomatic i would choke on food because the muscles in my esophogus couldn't push it all the way down, it wasn't in the 'wrong tube' it wouuld just sit in my throat stuck and my diaphram muscles were so weak I couldn't cough to get it out... i basically just had to keep swallowing for minuites untill the food went down.
