Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hope everyone is doing OK today -
Just finished my latest round of IVIGs.
Currently doing 3 IVIGs every other month. This was my third round and it appears that this is what part of my treatment plan looks like going forward.
There are a number of folks at the Infusion Lab that have been doing IVIGs for years. Some monthly some every other month.
My Neuro, and others say that the IVIGs slow the progression of MG.
I must admit that I do not see much change in me from day to day and month to month these days. My condition seems to be stable. I also do not see much change either before or after the IVIGs. My DW says she can see the difference but I sometimes think that she is saying that to make me feel better.
Have felt quite fatigued today. Not sure if it's due to the physical impact of the IVIG treatment or the mental stress of having to sit in a chair for 3 days with a needle in my arm.
Sooooo, How many here do IVIGs? and How do you feel before and after?
Have a great day,
S
Congratulations on completing your IVIG treatments. Your fatigue may be from the infusion.
I am awaiting my next round of IVIG. Two previous infusions helped tremendously. I went from pureed foods/soft diet to eating almost normally. I felt really well, so well I almost stopped taking my doses of Mestinon but continued to take it. The only side effect was a slight headache after each infusion. Hydrating a bit more before and after helped me.
My symptoms return as the next round of IVIG approaches, speech a little more unclear and swallowing a little more difficult.
Good Luck with your future infusions.
Take care
Robin23
glad that you are on the right track, infusions are a necessary evil, but it would be worst if they where not available.
i had 3 seriese of ivgs in 10 yrs, my last in response of my ralapse which allmost took me south ( if you get my meanning)
was given for a year first every 2 weeks then once every 3 months. i was able to recupered fully, and achive my goals of activities.
acualy considered the situation on which we all are, me more that others, as i have thalasasemia (in which the oxigen carried by red cells are dangerously low and that put me at the highest risk in this corovirus19.
byt at this moment and stage i feel the best that i ever felt in the last 7 yrs.
i take 5 miles walk dayli, concentrate on a healthy diet, take my mestidone 30mgs, dayli as the minimum, prednison 5mgs. every other day minimum required.
the headakes that all are incurring during the ivg.s is natural from the ivgs, it generaly start about one hour into the proccess, that goes away.
this is the reason that the doctor precribes for people to take ome aspirin 100mgs, and one 25mgs, pill of benedrill.
ths rest how we get better is entitely up to us by using commun sence and logic in how we proceed
one natural supplement that i strongly suggest is taken 2 pill every day in the morning ofmanganese 10 mgs., i had discusse this with my endocrinologist, which agree with my sugestion,
it is a must supplement to keep your thymus in proper conditions as your thymus contol your respiratory system as it can get inflamed.
be all well and enjoy life as it comes, sugestion of a old goat
luck Andre
How much do you take and where do you get it?
I'm surprised that my DW didn't know about this one. She is a cancer survivor and has me taking a couple of supplements that I had never heard of.
Looks interesting - we will look into it further.
Thanks Andre :-)
i take 2mgs. dayli (2 10mgs pills), i purchasse the bottles which contain 10mgs, as it give me more flexibility, to up when needed
i have been taken it for the last 10yrs. of my mg
the company i use to purchasse it is called Vitacost.com they are in the net just type the address and go from there,
the company I use is sources naturals, they are very reliable.
know i will explain why doctors dont tell you it is most likely because they do not know, and not interested in using supplements. but suplements and herbs where the law of the lands for milleniums before modern meds..
i have 2 doctors neuro and endocrinologist, womans both and my belief is i have confidence in them as womans have the tendency to be more patient , willing to leasing to theyr patients and work with them.
my wife is also a cancer survivor 3th. time , 83 1/2 yrs old and 5 yrs totaly free of cancer thanks to naturals meds.. as she refused to go into chemoterapy (her perogatif, which prouved good results.
you have a good doctor, but i suggest that you get a endocrinologist ,as they are they nest ones whom can address the moderm meds (syntetic compunds)
best of luck
Andre
Personally, I dont understand regular treatments of IVIG, but I know people do get a benefit from it. I did one round of IVIG when I was really bad early on. One round is five treatments, every other day. It pushed back my MG to allow my treatment of cellcept to start working. In a sense, IVIG is just a temporary fix and the pros and cons must be weighed.
What else are you doing for your MG? Is your plan to do IVIG forever or until MG hopefulyy goes away?
TJ