#ChatMS Transcript
Healthcare social media transcript of the #ChatMS hashtag.
– ().
See #ChatMS Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | MightyStrongMS @MightyStrongMS @MustStopMS Oops. Forgot #ChatMS |
 | Must Stop MS! @MustStopMS OH YEAH! It’s time for #ChatMS! https://t.co/QaOLbeyrhe |
| Must Stop MS! @MustStopMS How is everyone doing today? Getting that Christmas shopping done? #ChatMS |
| Must Stop MS! @MustStopMS I do apologize once again for having to miss last week. It's now day 10 for me of this crazy cold. Hopefully its gone soon. #ChatMS |
| Must Stop MS! @MustStopMS @MTerrenceJones better than I was last week, but still have a bit of head pressure. #ChatMS |
| Must Stop MS! @MustStopMS This week is a new topic i believe for #ChatMS. We are going to be talking about several things related to MS and our siblings. |
| Must Stop MS! @MustStopMS As a reminder, to join in for #ChatMS just click the hashtag. I will post questions starting with Q1, Q2, etc. Please answer with A1, A2, etc. for the appropriate question. Most importantly...include the hashtag #ChatMS in your responses so everyone can see. Q1 coming up! |
| Must Stop MS! @MustStopMS Q1 – MS was once thought to be a genetic disease, but now not so much. However, we still hear that those with a sibling do have a higher risk of getting MS. Do you have a sibling with MS or are you the “lucky” only one? #ChatMS |
| Must Stop MS! @MustStopMS @luansills You and me both! #ChatMS |
| Must Stop MS! @MustStopMS A1 - I am one of the lucky ones. Just me #ChatMS |
 | TinaRenee 🧡♿️ @jalenfan51 @MustStopMS A1. I'm the only one so far but there's still time I guess.😁 #chatms |
 | MTerrenceJones @MTerrenceJones A1..I guess i won the MS lottery since i am the only one who has ever been dxd in my family #ChatMS |
| Must Stop MS! @MustStopMS Here comes Q2! #ChatMS |
| Must Stop MS! @MustStopMS Q2 – For those that have siblings with MS, were they diagnosed before you? Did this help you in any way when you received your diagnosis? Or, maybe the other way around? Since there was somewhat of MS knowledge in the family already? #ChatMS |
| Must Stop MS! @MustStopMS A1 - Im surprised to see so many "lucky" ones so far. I thought there would have been more with family members. I'm sure there will be more. #ChatMS |
 | Two Faces of MS 💋 @TwoFacesofMS @MustStopMS None of my siblings have any autoimmune. Actually no one else in my immediate family does. #chatms #unicorn |
 | John Yellowcard @jyellowcard @MustStopMS A1: One of five, I am blessed that I am the only one who has it. #chatms |
| Must Stop MS! @MustStopMS Jumping to Q3! #ChatMS |
 | christian . @dearest_monster @MustStopMS A1 #chatMS nope, just me, have an aunt who they think had MS but we don't know |
| Must Stop MS! @MustStopMS Q3 – If you are the only one in your family with MS, have you heard of MS before? Is what you heard anywhere close to what you actually know now about the disease? #ChatMS |
| Must Stop MS! @MustStopMS @MyNieceTorpel haha. We may be on to something! #ChatMS |
| John Yellowcard @jyellowcard @MustStopMS A2: I could never had imagined it. #chatms |
| Two Faces of MS 💋 @TwoFacesofMS @MustStopMS I did crisis work for Tysabri when it was taken off the market several years before my onset. So somewhere in the back of mind I was suspicious. FF 10 years since symptoms, and I have mild disease burden. Not what I thought about #MS #chatms |
 | charlotte ballenger @sadiepuss I’m it. I’m glad because I wouldn’t want anyone else to deal with MS. I don’t think my sister could. We both have Type 1 Diabetes. She’s very controlling and rigid and wouldn’t be able to handle it. |
| Must Stop MS! @MustStopMS A3 - I have heard of MS before, but had no clue what it was. Soooooo many misconceptions out there. You hear some crazy things beign presented as facts. #ChatMS |
| MTerrenceJones @MTerrenceJones A3. I did hear of MS before but didnt know alot about it until i was diagnosed. I thought it something similar to what Michael J Fox has (silly me). I didn't have any peers to go to for information like i do know #chatms |
| Must Stop MS! @MustStopMS I think we all can agree that knowledge is power when it comes to MS. #ChatMS |
| Must Stop MS! @MustStopMS Q4 is up next! #ChatMS |
| Must Stop MS! @MustStopMS Q4 – Do you feel you get extra support from any family members with MS since you are fighting a similar battle? On the flip side, do you feel it causes additional conflicts? #ChatMS |
| TinaRenee 🧡♿️ @jalenfan51 @MustStopMS A3. I'd heard of #ms before because my mom is a nurse and we talked about it in Anatomy class when I was in high school. I thought it was a benign disease and didn't know there was different types. #chatms |
| TinaRenee 🧡♿️ @jalenfan51 @MustStopMS A4. When I do speak with my cousin we share our experiences and it's nice because we get each other. #chatms |
| Must Stop MS! @MustStopMS Up next is Q5! #ChatMS |
| Must Stop MS! @MustStopMS Q5 – If you are a parent with MS, how much do you fear one of your children getting it? Is this something you think about often? Can you elaborate or explain? #ChatMS |
| Must Stop MS! @MustStopMS A5 - to be honest this scares the crap out of me. I can't say i think about it all the time, but it definitely pops in my mind from time to time. #ChatMS |
| MTerrenceJones @MTerrenceJones A4 i dont i get any extra support per se. I have other family members have their own medical issues this year. 2019 has been a bitch #ChatMS |
| Must Stop MS! @MustStopMS @Lissa_Leann don't forget to use hasthag #ChatMS so others can see too :) |
 | PBW @Hawks50_2 @MustStopMS A one. Never heard of MS before I was dx. So yes I'm the only lucky one. #ChatMS |
| Must Stop MS! @MustStopMS Q6 up next! #ChatMS |
| Must Stop MS! @MustStopMS Q6 – For the parents again...do you ever feel extra paranoid when kids say they don’t feel well or experience anything odd? Do you have an example? #ChatMS |
 | Kevin A @Big_in_VA @MustStopMS A1 - I am as you say the lucky one. No blood relatives I know of have MS. #ChatMS |
| PBW @Hawks50_2 @MustStopMS A three. Whoops answered this already. I should know by now to just wait and not over share. 🙈#ChatMS |
 | ☠️T☠️ @themillsfamily @MustStopMS A3: No I had not heard of MS before. All my drs say, well someone in your family has had to have it, I reply, likewise, someone had to be the first at some point - in my family I am that person that we know of. #ChatMS |
| Must Stop MS! @MustStopMS @Hawks50_2 haha its all good! #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A3 - I had heard of it before diagnosis but knew very little about it. And no nothing anywhere close to what I now know. #ChatMS |
| John Yellowcard @jyellowcard That was on point. #chatms |
| Must Stop MS! @MustStopMS A6 - i'll be honest. This is something I have to work on a lot. Sometimes I feel like i worry about unnecessary stuff. #ChatMS |
| MightyStrongMS @MightyStrongMS @MustStopMS A1. I have been the only fortunate one in my family to have been blessed to battle this MonSter🧡💪 #ChatMS |
| PBW @Hawks50_2 @MustStopMS A four. They know nothing about MS except for the fact that I have it. They don't ask questions. When I share I just feel like a weirdo. They don't have any way to understand me. #ChatMS |
| Must Stop MS! @MustStopMS Q7 - last question of the night coming right up. #ChatMS |
| Must Stop MS! @MustStopMS Q7 – Are there any tips at all you would recommend in dealing with MS along side other siblings? Or, if you are the only one, any tips on dealing with family and their knowledge of the disease? #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A5 - Yes it worries greatly, I would hate it to be my legacy to them. I think about almost daily. Father’s should be remembered for lots of things and the memories they share not a life long disability that children have to fight & worry about passing along themselves. #ChatMS |
| John Yellowcard @jyellowcard RT @Hawks50_2: @MustStopMS A four. They know nothing about MS except for the fact that I have it. They don't ask questions. When I share I just feel like a weirdo. They don't have any way to understand me. #ChatMS |
| TinaRenee 🧡♿️ @jalenfan51 @MustStopMS A5. Whenever my son has a mysterious ache or pain I think it might be #ms. I don't let him know that though. He's almost the age I was when I was diagnosed. #chatms |
| PBW @Hawks50_2 @MustStopMS A five. I have two children thank Gd. It is not a fear of mine. I heard it's not genetic. I'm gonna go with that. That's why I went ahead and had another child after dx. If Gd wills it I hope to have more. #ChatMS |
| John Yellowcard @jyellowcard RT @Big_in_VA: @MustStopMS A5 - Yes it worries greatly, I would hate it to be my legacy to them. I think about almost daily. Father’s should be remembered for lots of things and the memories they share not a life long disability that children have to fight & worry about passing along themselves. #ChatMS |
| MightyStrongMS @MightyStrongMS @MustStopMS Q3. I had heard about it a little via my medical training. But, not as much as I know now. Vague would be a great description of what I thought I knew. #ChatMS |
| christian . @dearest_monster @MustStopMS A6 #chatMS one time my little guy, 7, told me his legs hurt soon after waking up and my mind had a mini panic attack |
| TinaRenee 🧡♿️ @jalenfan51 @MustStopMS A6. When my son says he has cramps or he's extremely tired I get freaked out. He did have a cat scan done when he was 15, epilepsy was suspected but not found. #chatms |
| Must Stop MS! @MustStopMS @jalenfan51 It's hard not to do that. I freak out and my wife has to tell me to stop. Our son is 12 and I have to work on not being that way #ChatMS |
| PBW @Hawks50_2 @MustStopMS A six. Nope. Again living in fear is not healthy. Life ur life. #chatms |
| Must Stop MS! @MustStopMS @dearest_monster I've been there. it sucks. I have to work really hard not to be like that. My wife is always like Stop! #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A6 - Yes whenever they discuss any symptoms that are unusual from the normal things they have experienced. There was a time one of the kids was having dizziness issues that sounded familiar. Fortunately it turned out to be the need for glasses. #ChatMS |
| TinaRenee 🧡♿️ @jalenfan51 @MustStopMS It's hard because #ms is so unpredictable and can come out of nowhere. #chatms |
| Must Stop MS! @MustStopMS @jalenfan51 I get the "i'm tired" a lot too. i don't like it lol #ChatMS |
| Must Stop MS! @MustStopMS RT @Hawks50_2: @MustStopMS A six. Nope. Again living in fear is not healthy. Life ur life. #chatms |
| Must Stop MS! @MustStopMS @Hawks50_2 I'm trying so hard to live by this when it comes to him. #ChatMS |
| Must Stop MS! @MustStopMS Thank you all for chatting this week. It's a new topic for us, but still interesting. #ChatMS |
| PBW @Hawks50_2 @MustStopMS A seven. No I'm at a loss on this one. I just tell them as tiny as possible and just pretend I'm fine. My amazing husband knows everything and is extremely supportive. That's all I need. Usually. @PW_Mpls 😊thanks #ChatMS |
| Must Stop MS! @MustStopMS I do have a special announcement for next week though! We will have another special guest host! #ChatMS |
| Must Stop MS! @MustStopMS RT @Hawks50_2: @MustStopMS A seven. No I'm at a loss on this one. I just tell them as tiny as possible and just pretend I'm fine. My amazing husband knows everything and is extremely supportive. That's all I need. Usually. @PW_Mpls 😊thanks #ChatMS |
| TinaRenee 🧡♿️ @jalenfan51 @MustStopMS A7. I really don't LOL. My younger sister and two of my nieces are very interested in knowing about #ms. My youngest sister and brother couldn't care less but it's cool. #chatms |
| Must Stop MS! @MustStopMS Next week our special guest host will be @antidote_me . They will be talking about research and clinical trials and how we could get more involved. Don't miss it! #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A7 - Do your best to educate them in bite size chunks of information. One thing I have heard is I over share sometimes and it puts them off. So now I give it out in dribs and drabs and usually only when asked to. #ChatMS |
| Must Stop MS! @MustStopMS RT @Big_in_VA: @MustStopMS A7 - Do your best to educate them in bite size chunks of information. One thing I have heard is I over share sometimes and it puts them off. So now I give it out in dribs and drabs and usually only when asked to. #ChatMS |
| Must Stop MS! @MustStopMS @themillsfamily ugh i'm sorry to hear that! #ChatMS |
| John Yellowcard @jyellowcard That sounds great. Thank You #chatms |
| Must Stop MS! @MustStopMS Did you know that you can host #ChatMS too one week? Let me know if you'd be interested. It's a lot of fun! I hope you all have an amazing week! |
| MightyStrongMS @MightyStrongMS @MustStopMS Not at all. I try and share what I can without overwhelming my family members. #ChatMS |
| MightyStrongMS @MightyStrongMS @MustStopMS I do think of this fact. However, if mine wasn’t genetic, I don’t have fear for this. The webinars I share with my sidekicks are helpful to instill everything I can for them to know this too. #ChatMS |
| MightyStrongMS @MightyStrongMS @MustStopMS Not at all. I have always been a very conscious parent when it comes to my kids when their sick. Especially being their only parent, always breathing through situations and not letting anxiety be a focal point has helped. #ChatMS |
 | Melissa @Lissa_Leann @MustStopMS A7- Be patient as they are learning, it's a complex disease. I've found that telling them about symptoms as I have them, and the meds as I take them, helps immensely. You don't get it until you get it, is what I try to remind myself. #ChatMS |
#ChatMS content from Twitter.