#ChatMS Transcript
Healthcare social media transcript of the #ChatMS hashtag.
– ().
See #ChatMS Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Must Stop MS! @MustStopMS Everyone stop what they are doing...and join #ChatMS starting now! Lets talk #MultipleSclerosis! |
| Must Stop MS! @MustStopMS Everyone please introduce yourself and tell us the funniest thing that happened over the weekend. #ChatMS |
| Must Stop MS! @MustStopMS The topic for today's #ChatMS topic is medications, but its medications on top of DMDs. Do you take multiple medications? Let's talk about it. Question 1 coming right up! |
| Must Stop MS! @MustStopMS Q1 – Many of us with #MultipleSclerosis are on a disease modifying therapy, but many of us also have to take additional medications. Do you have to take additional medications to treat your symptoms? Which ones? #ChatMS |
 | iConquerMS @iConquerMS @MustStopMS A1 - I often take Nuvigil or Ritalin to stay awake and SOMETIMES something like Clonazepam or Temazepam to help me sleep, most everything else didn't work well so I stopped taking it #ChatMS |
| iConquerMS @iConquerMS @luansills @MustStopMS Can I ask why you stopped? #ChatMS |
 | Marty Hall @jeanmarh20 Happy Monday everyone 😊 A1 I take Baclofen for spasticity #ChatMS |
 | Kevin A @Big_in_VA @MustStopMS A1 Yes tipromate to control the trembling I suffer with because of the MS #ChatMS |
| Must Stop MS! @MustStopMS Q2 – How many additional medications do you have to take aside from your DMD (if you are on one)? #ChatMS |
| Must Stop MS! @MustStopMS @makkydoll Hey there! #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A2 just one other for my blood pressure plus Aleve as needed to help with pain at times. Also vitamins #ChatMS |
| iConquerMS @iConquerMS @MustStopMS A2 - right now I only take 2-3 but in the past I felt like I was taking a handful in the morning and a handful at night #ChatMS |
| Marty Hall @jeanmarh20 A2 a diuretic for swelling feet, legs #ChatMS |
| Must Stop MS! @MustStopMS Q3 – Do these medications work as hoped for your symptoms? Have you found meds that did not work? Which ones? #ChatMS |
| Marty Hall @jeanmarh20 A2 I forgot about the headaches so I take Excedrin #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A3 Yes for the most part. The Aleve has limited success depends on the day and everything else. #ChatMS |
 | ☆R͓̽a͓̽c͓̽h͓̽a͓̽e͓̽l͓̽☆ @Luvgirl101 @MustStopMS A2 - three plus two supplements. #ChatMS |
| iConquerMS @iConquerMS @MustStopMS A3 - the only medication that has ever worked as expected for me was Temazepam/Clonazepam. Everything else didn't really work that great but sometimes took the edge off a symptom. Even stuff like Nuvigil/Ritalin don't totally do the trick for me, just help a little #ChatMS |
 | MTerrenceJones @MTerrenceJones @MustStopMS Hey today is my 5 year anniversary of me throwing out the first pitch at a #Nats game.😁#chatms |
| MTerrenceJones @MTerrenceJones RT @MustStopMS: Q1 – Many of us with #MultipleSclerosis are on a disease modifying therapy, but many of us also have to take additional medications. Do you have to take additional medications to treat your symptoms? Which ones? #ChatMS |
| iConquerMS @iConquerMS @makkydoll Gabapentin just KNOCKED ME OUT #ChatMS |
| Marty Hall @jeanmarh20 A3 According to the neurologist the Copaxone is working but I reserve judgement until after my next MRI. The Baclofen works for about 3 hours and then I need more. #ChatMS |
| Must Stop MS! @MustStopMS @MTerrenceJones For real?? Thats awesome! #CHatMS |
| Must Stop MS! @MustStopMS Q4 – Do you, or have you, had any issues getting these medications covered by insurance? #ChatMS |
| iConquerMS @iConquerMS @luansills @MustStopMS I certainly did not know that, I am just used to hearing about how addictive benzodiazepines can be #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A4 Fortunately no. #ChatMS |
| MTerrenceJones @MTerrenceJones A1 Not taking additional medications. My current issue is the constant fatigue and headaches..well besides the ibuprofen #ChatMS |
| Marty Hall @jeanmarh20 A4 no problem so far #ChatMS |
| iConquerMS @iConquerMS @MustStopMS A4 - some specialty medications that require a prior authorization like Ampyra or Acthar can be EXTREMELY difficult to get paid for by insurance #ChatMS |
| ☆R͓̽a͓̽c͓̽h͓̽a͓̽e͓̽l͓̽☆ @Luvgirl101 @MustStopMS A3 - amantadine was fine for a year or so but had to keep increasing dosage with little improvement. Ultimately switched to a different fatigue RX which has worked out better. #ChatMS |
| iConquerMS @iConquerMS @luansills @MustStopMS which I find funny because they will turn around and give you Norco in a Pez dispenser haha #ChatMS |
| Must Stop MS! @MustStopMS Q5 – Have you utilized CBD products or MMJ to help treat symptoms? Have you reduced your number of medications because of these? #ChatMS |
| iConquerMS @iConquerMS @B_hurdis @makkydoll haha I don't know what it is, no other medication hits me like that, I can take antihistamines like a champ but gabapentin? Forget it, my day is over #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A5 no I haven’t #ChatMS |
| iConquerMS @iConquerMS @JesswithMS @MustStopMS That's the worst part, after ALL THAT the stuff doesn't even work... what a waste of EVERYTHING #ChatMS |
| ☆R͓̽a͓̽c͓̽h͓̽a͓̽e͓̽l͓̽☆ @Luvgirl101 @MustStopMS A5 - yes, tried two different CBD products so far but haven't found them to be very helpful. #ChatMS |
| iConquerMS @iConquerMS @luansills @MustStopMS Luckily I am no longer in a situation where I need it anymore and I hope it stays like that! #ChatMS |
| Marty Hall @jeanmarh20 A5 no I haven’t #ChatMS |
 | Luis @lte66 Sorry I’m late to #ChatMS will try to catch up as I go. This is Luis! Hope you all are having a great Monday! Funniest thing = playing Mario Kart w/ my cousin lol fun times! |
| iConquerMS @iConquerMS @MustStopMS A5 - YES. Haven't had a pain killer in years, the reason I only SOMETIMES take sleep aids is because usually cannabis products do the trick, I even stopped my antidepressant for a while but that was short-lived, looking to get back on one now. #ChatMS |
| Luis @lte66 A1. I’ve taken Tysabri now for 11 years. But I stopped taking other meds. They would do more bad than good. I only take Adderall for fatigue now #ChatMS |
| iConquerMS @iConquerMS @MustStopMS A5 part 2 - Also, Oxybutynin to get through the night without getting up to use the restroom every 2 hours? Cannabis products work 1,000 times better for me. Helps my sometimes crippling anxiety as well. #ChatMS |
| Must Stop MS! @MustStopMS Q6 – Are you hesitant at all to mention new symptoms to your doctor(s) in fear of adding another medication to the list? #ChatMS |
| iConquerMS @iConquerMS @luansills @MustStopMS Same here, especially opioids #ChatMS |
| Luis @lte66 A2. I only take Adderall for fatigue. #ChatMS It helps me get through the day. I stopped taking all other RX meds & have found diet & exrcise have helped battle some MS symptoms. |
| iConquerMS @iConquerMS @MustStopMS A6 - Usually not because most the time I already know he will offer me something which I will just turn down because I don't feel like I need it THAT bad. #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A6 not at all. We discuss any recommendations before I agree to them or take on new medication. I also tell them if something has stopped working and I stopped or scaled back the dosage. #ChatMS |
 | Paige Reale @paige_reale @MustStopMS Sorry I was late, but I was helping my son with his homework. What fun! 😉 Have a great week everyone! #ChatMS |
| iConquerMS @iConquerMS @lte66 That is the only medication I haven't tried for my #fatigue/cog-fog. My neurologist won't prescribe it, too addictive he says #ChatMS |
| Marty Hall @jeanmarh20 A6 I never hesitate in case the new symptom is serious #ChatMS |
| Luis @lte66 @iConquerMS It’s very controlled. I have to tell my Dr way in advanced to get a refill. But I take very little. Only when I have to. So a regular RX can last me a few months. #ChatMS |
| Luis @lte66 A4. Thankfully most meds were covered by my insurance. Or the drug company helped w/ financial help #ChatMS |
| Must Stop MS! @MustStopMS Q7 – What tips or advice can you offer to someone who may feel overwhelmed at the number of medications they are faced with? #ChatMS |
| Must Stop MS! @MustStopMS @makkydoll Thats awful #ChatMS |
| Kevin A @Big_in_VA @MustStopMS A7 Research and consultations are your best friend and understanding for what it all means and the possible impacts and changes to expect. #ChatMS |
| Luis @lte66 A5. I’ve use only a spray to battle fatigue or for feeling down. Don’t think it has helped much #ChatMS my Dr is licensed to RX but is worried about my cog issues. But if I need he can RX me anytime |
| Must Stop MS! @MustStopMS RT @Big_in_VA: @MustStopMS A7 Research and consultations are your best friend and understanding for what it all means and the possible impacts and changes to expect. #ChatMS |
 | J.DANIELLE @mama_withms A4- I usually have to do a PA for my meds/any changes, but luckily my ins has been willing to approve!! and thank God!! #beatMS #ChatMS |
| Luis @lte66 A6. No, my Dr also has MS so he’s very helpful to treating any new symptoms I have. Or he is very open to discuss any new treatment #ChatMs |
| Paige Reale @paige_reale @MustStopMS Yes, and it has helped my pain, muscle spasms, leg cramps, and sleep. #ChatMS |
| Must Stop MS! @MustStopMS @makkydoll Thanks for joining as always! costco hotdogs huh? Never been surprisingly. #ChatMS |
| Luis @lte66 A7. Never be afraid to discuss to your MS support team (Dr, family, friends, MSers) there is a way to treat symptoms even if it’s an unconventional way. #ChatMS |
| J.DANIELLE @mama_withms A3- Copaxone made me webb/swell up, something crazy!! I said ohh no, I’m DONE!! with Tysabri, I felt like I was going insane!!! and I’ve actually met a few that said the same?!! #beatMS #ChatMS |
| Must Stop MS! @MustStopMS RT @lte66: A7. Never be afraid to discuss to your MS support team (Dr, family, friends, MSers) there is a way to treat symptoms even if it’s an unconventional way. #ChatMS |
| Must Stop MS! @MustStopMS Thank you all for chatting and sharing your experiences each week. It is truly helpful knowing we aren't alone in dealing with our symptoms. #ChatMS |
| Must Stop MS! @MustStopMS See you all next week! #ChatMS |
| Kevin A @Big_in_VA @MustStopMS Agreed we are our own best advocates and supporters. Good days and bad we help each other through the journey we share. #ChatMS |
| Luis @lte66 @iConquerMS I was also on Wellbutrin (???) normally used for smokers to kick the habit. But I didn’t feel a difference. Also slow release adderall. Also felt like a grape hitting a brick wall. No difference. #ChatMS |
| iConquerMS @iConquerMS @lte66 So wait, are you on regular release now? And are you saying it works better than the other two or none of it really seems to work any better than the other? #ChatMS |
| Paige Reale @paige_reale @MustStopMS I honestly second everything @JesswithMS said. Couldn't have said it better myself! #ChatMS |
#ChatMS content from Twitter.