Have you gained new insights about MS si... - My MSAA Community
Have you gained new insights about MS since joining our online community?
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Wonderful website! So helpful to read comments from others since we all have a common bond and unless you actually have it, you can't really understand. Thank you!!
I have realized that if MS gets cured the country will go to hell. The pharmaceutical companies will be hit so hard that the unemployment lines would be extremely long. It is better for them that we remain sick. I did HSCT, my progression has stopped and reversals are taking place. Like Cris Rock said,
"There is no money in a cure"
HSCT look into it before it's too late!
$$$$$$
Rich, what is HSCT? Can't recall, but umm, that's my typical response, right? Bea
Hematopoietic stem cell transplantation I was transplanted on May 8th. Went from 300 steps unassisted to 12,000 daily. The brain fog is lifting. I can hold conversations. No heat issues at allnow. No more eye issues. I'm back to driving my car. My balance is still not there but it's hasn't even been 7 months. All that and no more disease modifying drugs since February 2nd. I tell everyone to do it if possible. In the USA it won't be approved till 2022. I don't think my or anyone's MS will pause till then. It's already approved in other countries. The $ issue is why Dr. Burt in Chicago Illinois is havein a hard time getting it approved. It's all self funded cause big pharma knows once approved they are in the crapper.
Hi, Rich - While I agree with you a bit, I use to work in a genetic engineering firm, as a typist not as a scientist, & can attest to why drugs are so expensive: Finding a safe, efficient & effective way to end, cure, or alleviate a disease or symptom can take numerous attempts & even more failures in that goal. One such effort we'd worked on was skin ulcers. We'd created a rinse that would encourage healthy cell growth & make debraiding the area (ridding the dead skin from the wound) less painful and more thorough. We never got to Phase IV (Phase I (safety), Phase II (don't remember - LOL) , onto Phase III (with humans), that because the FDA, I believe that's the granting authority, determined the healing process was achieved simply because the patients in the Study were being attended to and their wounds were being flushed routinely as opposed to haphazardly. All that research, late nights going back to the lab to see how their projects are doing, etc., down the drain. On to the next. Keep in mind that I was sitting at my desk when the Neurosurgeon called me giving me the diagnosis of, "You have a polyp in your left nasal cavity," getting me to respond with, "What?!" Then he told me "You have MS." Dropped that bomb in my lap ~ while I was at work? Not a very good bedside manner. That was Feb. 1, 1989 @ 11:30 a.m. I'd had symptoms since a hysterectomy in March, 1984, when I was 42. Typically, a dx of PPMS is a given when dx'd after the age of 40.
What I'm getting at, Rich, is that although curing MS in the US will be the "shot heard around the world!", I'm sure most of pharma won't be filing bankruptcy as there are hundreds of diseases yet needing cures. I applaud your success with HSCT, and will pray for your continued improvement.
Bea
I belong to a few MS groups. I really do like this group. I read quite a bit so I can't say I have gained new insights about MS per say . I like the posts and since everyone is different I do learn how ms effects different people and I find that interesting.
Other websites made me lonelier because nobody ever responded to my posts or comments. Here people reply or like by the next day and I feel heard, acknowledged and supported. There is room for long posts and that helps get the thoughts out of my mind. Then they have less power over me.
TracyBelle don't ever let those thoughts have power over you. Been there ugh they can be nasty little beasts. 
Here we are turning into a huge family, and always there for eachother.
Together we are stronger and always there for each other ♡
So vent, cry, tell a story. We're here for you!
JohnMSAA, It's Fancy1959 responding with a resounding yes to your question. With nearly 1300 members on this MSAA chat room alone, how could you not pick up bits and pieces of information as you read and respond to posts. Not to mention being introduced to a literal smorgasbord of topics. In addition to the knowledge one picks up in this chat room is the benefit of friendship, support, and belonging that soon envelops you when you work with this amazing group of individuals.
Its so good and so much variety. People are very friendly and we talk freely, share information, question, news,feelings. I guess this site has all complete packet for us. I really enjoy.
Oh, yeah, very much. I would say big difference because I can see my own problems explained by others and knowing it is not only me or get better understanding and more details, ideas and funny conversations. Also I get updates and testemony of symptoms and therapy from direct source:the patient, not the pharma(big change in trust). This site is very well structure ,dynamic, keeping us active and good subjects to discuss. I am very happy to be in mymsaa🤗👍😉
