Sounds like me right now. I'm having very bad cramps on one side of my body and sometimes both sides at the same time. I cannot do anything... It's very painful and it happens every 5 to 15 minutes. My neurologist doesn't do anything to help. Any other medication I get from my family doctor are not working. My MS Relapse started at about the same time as the COVID-19 crisis. (For the info, I live in The Netherlands) So I'm glad that this young woman gets the attention that she receives.
Fantastic! Unfortunately, I do not have a doctor like you to work with. Not accessible, or up to speed on therapies. You’re incredible and the videos so educational. 🙏
Thanks for the report Doc! I have my fifth Ocrevus infusion on Friday May 8. I’m 65 and in pretty good health overall. I haven’t been sick or had a cold in approximately 35-40 years. My 10 day colds always turned into sinus infection for 2 months! Been a long time so maybe I’m playing the odds! 🤷🏻♂️Great numbers from annual complete blood tests. It’s a 400 mile RT and a14-15 hour day. I’m more worried about going into the “Big City” (Portland Oregon) and all the possibilities of contact. It’s a long trip/day! At least 8-12 restroom stopes. A lot of disinfectant sprays throughout the day. I refuse to give up on life no matter how challenging it is!
I'm just really concerned about this young woman. Hope she gets positive results with the new direction. Thank you for treating her at a time like this. Maybe Dr. you can let us know how she responds to the meds in an upcoming video. Let's stay "healthy" everyone.
It is helpful to hear how you treat your patients for different problems. Seeing all the info you give in your videos put to action! Thanks and have a good day🙂🙋♀️
Very nice video, especially the sound effects to conceal information. One idea I had was to do a video of me responding to an acute stroke via telestroke but bleeping out all the data/sound from the other side of the call and the identifying information. I'm not sure this is kosher, but I could release it several months later to avoid any chance of the revealing the person's identity.
Thanks Dr. Beaber! I asked the patient if she was ok with me making the video and offered to show her the vid beforehand for her approval but she declined previewing it. I feel bad that several viewers found my bleeping out drug names to be disruptive, I was just overly concerned about maintaining privacy!
@@AaronBosterMD I think you did the right thing. Obviously, those details would mean nothing to me, but there could be someone in your area who knows her and some of the details of her condition, and even if she were open about her condition, she wouldn't necessarily want people to know about all of her symptoms or that she is experiencing a relapse. I changed some of the details of the people I interviewed in my book so it would be impossible to identify them (with the exception of one person who explicitly asked me not to since she is somewhat of a public figure and wanted people to know her story).
Thankyou for this video. It really hits home and Iwish the best for this lady,her husband and you. These are challenging times we are living in now. I know you will get this lady feeling better.
I realize I’m a bit late in seeing This video, but it hits so close to home that it’s a bit of believable. I am the woman that was always asking about Rituximab. I was on it, and I was not happy. I repeatedly got infections I just didn’t feel good.. I kind of dropped off the map after a pretty severe relapse in May 2019, That essentially took away my ability to walk. Thanks to watching your videos, I insisted on Nuero rehab, And I was making progress, but I just kept getting sick, which interfered with the whole process. I had enough PT to work on at Home, And we mutually decided that I would continue working at home until I’d goals we had set, and was ready for more. At home I wasn’t making much progress, continued to be sick over and over again, And even considered stopping that DMT. But I went ahead with The next infusion because I want to be on the highest tier DMT possible. Life went on, Except I started getting opportunistic infections, and was on many courses of antibiotics. In early January, this year, I had another relapse. It was so bizarre. It felt as if someone had injected my thighs with helium it felt they were moving up and down. I put my hands on my thighs and they were right on the chair where they should’ve been. I take my hands off and they would feel like they were floating up and down in the air. I thought it was just rather funny and my MS was acting up. My husband came in the house that I started telling him about it, and he immediately noted that I was severely slurring my speech. I immediately called our emergency triage system and they had me do a delightful 911 (delightfully sarcasm LOL) The paramedics showed up with a chair Gurney that you had to lift your legs up to get your feet on the step To get up onto the chair. The only problem was was that I could not lift either leg high enough to put my foot on the step. It was just one of those indignities of having MS. I got to stay in the hospital for three days to rule out stroke. It was a good thing that I have been working on all that Nuero rehab, Because I had been doing the exercises with both legs. This exacerbation affected the Other side of my body, in a very similar manner to the earlier exacerbation. It was a much easier process To be able to walk again; it helped that I trusted that the muscles would still hold me up from all that PT! It is time for DMT change, so I started Gilenya. Unfortunately, my body over reacted to that as well and my white blood cell count plummeted what is that
Thank you for sharing that example. I'm in a similar situation but symptoms are not unbearable so doc and I decided no treatment with steroids at this time. I really appreciate your videos and have been back and forth on idea of switching neurologist and think I will call your clinic and see if you are taking new patients and if you would treat, me, who is out of state using telemedicine. I will continue with my current neurologist but would like a second option on my current status after living with MS for approximately 28 years from a doctor who specializes in MS. Again thank you for all the educational videos you share with the world to better inform. For me knowledge is absolutely power. I am going to contact your clinic in case you don't have chance to respond to me here. :)
This pandemic has GOTTA end soon. I’m going through an attack now effecting my eyes and I had an MRI 2 weeks ago and my MS clinic isn’t picking up or calling me back which is soooo unlike them. 🙃
Ha my comment was so long, I didn’t get to finish it. So my WBC was very low. I was told to stay at home before California shut down. My allergist/immunologist Got involved, because my immunoglobulin levels were all way below normal, I couldn’t make antibodies, and I was Again told to stay home, No visitors. It’s all probably a blessing In Disguise as I wasn’t exposed to the community spread that’s been going on. I have gone in to clinic once a month to have my port cleared. That’s considered essential apparently, and I was told to go with my N 95 mask (i’m asthmatic, we are in high fire risk area, I had 10 already and emergency supplies) And goggles. Most departments are still essentially shut down, So the exposure risk is limited. It’s pretty scary to go in though.... but it’s my once a month field trip LOL. The DMT switch was wonderful. I take My new DMT every other day, and my WBC is rising as well as my immunoglobulin levels. I’ll be tested again next month, and hopefully will have recovered enough to be able to make antibodies again. But it looks like I’ll be at home for the long-haul. That’s OK. Even though I have not had a complete recovery neurologically, I’m still working on it and getting better. Getting off the Rituximab was the key for me. Life is good, even in the middle of this crazy pandemic. I used to be a teacher, With a regular and a science credential. Unfortunately, the lack of science education and understanding in the American public is coming home to roost As as We are seeing incredible rise in cases of the virus, hospital and ICU Admissions as people have ignored public health recommendations......Thank you so much for your informative videos, and your positive Support Of MS patients. All over the world! Stay safe! Someone should write a book...MS in the Covid-19 Pandemic!
Thanks Aaron, I recently had the same situation, also went with high dose steroids but IV. Just wondering what is the rough time frame for your immune system to recover from corticosteroid treatment? Thanks.
Hi Dr Boster! thank you for the video - it’s very helpful content. One observation. I noticed you didn’t mention having an MRI done. Is that because of the pandemic, or another reason?
This is an important point. I actually feels it's NOT appropriate to obtain an MRI in this situation. I"ll make a video answering this question soon! TY for asking it.
I am starting Gylenia asap. I have my eye doctor appointment. I am leaving my house today for the last time for awhile. I am curious about how long I should be staying in the house for after I start my medicine? And should I plan on wearing a mask and gloves for the long term? I have decided to make this my last day out because i figure that since my eye appointment is the 15 that if I am exposed i would know before I start Gylenia. I have been taking precautions like wearing a mask and gloves when I go to the store.
From personal experience, I just finished a round of oral steroids. No change whatsoever...still have the same “new” symptoms. I did however have three rounds of the IV steroids last year and it knocked it out. Given the Covid Virus, I am very hesitant to go to the ER for IV steroids for obvious reasons.
Scotty I have a teleconference with my neuro coming up....a follow-up actually to see what steps I need to take. My symptoms got worse.....my balance is extremely bad.....falling down a lot, slamming into walls and the headaches are fierce. Thank you for your thoughts. Stay safe...be well.
Dr. Boster, Is the amount of time you are delaying starting a new DMT dictated by the current DMT this patient is currently taking. Or are you wanting to stop the patient’s current flare up before starting a new DMT.
I have a question about the idea of a cytokine storm taking place with some COVID-19 sufferers and how similar this might be to what happens in MS. In others words, does this cytokine connection make MS sufferers more likely to have an immune system overreaction if they contract COVID-19? I realize it’s off the topic of this video but thought perhaps It could be part of a future video. I think a lot of MS sufferers are trying to figure out whether the fact that their immune system goes haywire with MS makes it more likely the same would happen with COVID-19. Thanks.
@@AaronBosterMD thank You! It's happening to me and I didn't realize it was a real thing, until I saw it on one of your videos. I thought I was losing my mind. Thank you for your time!
I've been doing really bad lately. All of my ms symptoms have gotten worse and I'm having extreme depression and anxiety and panic attacks. Honestly 2 days ago I thought I might die, but I survived just to get bitten by a tick the next day. I haven't been to any doctors because I'm afraid of Covid. I need something for my anxiety, but can't deal with talking to 4 or 5 therapists before getting help (and meds) from a psychiatrist. Things are so bad I was crying on my Dads gravestone last night.(didn't help). Anyway, I'm afraid now I might have Lyme Disease. Would antibiotics be given for this? Can a person with ms even take an antibiotic? Any help would be more than I've had in a long time. Really hoping ya get this.
you're not alone Mike. Yes there are antibiotics for lyme if that were to become necessary. I recommend you call your doctor's office and ask for a visit. I also would strongly recommend you seek out a counselor to help you process. You got this Mike and you are not alone out there.
I m in the same situation but I'm a diabetic so I can't take steroids I'm in severe pain to in my back I'm thinking about going to the emergency department so I can get relief
Aaron Boster MD Sorry, didn’t mean to offend you or anything...but knowing you who helped us so much with all the education etc. -suddenly disclosing drugs names, becoming a big story...this is what I didn’t like 🤷🏻♂️ and please this is only an honest opinion -not to judge you👍
First video I couldn't relate too. Hope the young lady is going to improve. As for sharing your experiences in order to not violate any Hipaa/demographics, instead of noises could you just speak of the patient and the patients partner. Nobody would know gender and as for the meds, is that a new thing?
@@AaronBosterMD ,I was going for constructive feedback not so much "complaining " did I miss the mark? Anyway, this was 1 out of hundreds, the odds are still very much in your favor!
Fascinating. Thank you for sharing patient experience. And running through your medical responses made with patient.
Sounds like me right now. I'm having very bad cramps on one side of my body and sometimes both sides at the same time. I cannot do anything... It's very painful and it happens every 5 to 15 minutes. My neurologist doesn't do anything to help. Any other medication I get from my family doctor are not working. My MS Relapse started at about the same time as the COVID-19 crisis. (For the info, I live in The Netherlands)
So I'm glad that this young woman gets the attention that she receives.
Fantastic! Unfortunately, I do not have a doctor like you to work with. Not accessible, or up to speed on therapies.
You’re incredible and the videos so educational. 🙏
Thanks for the report Doc! I have my fifth Ocrevus infusion on Friday May 8. I’m 65 and in pretty good health overall. I haven’t been sick or had a cold in approximately 35-40 years. My 10 day colds always turned into sinus infection for 2 months! Been a long time so maybe I’m playing the odds! 🤷🏻♂️Great numbers from annual complete blood tests. It’s a 400 mile RT and a14-15 hour day. I’m more worried about going into the “Big City” (Portland Oregon) and all the possibilities of contact. It’s a long trip/day! At least 8-12 restroom stopes. A lot of disinfectant sprays throughout the day. I refuse to give up on life no matter how challenging it is!
I'm just really concerned about this young woman. Hope she gets positive results with the new direction. Thank you for treating her at a time like this. Maybe Dr. you can let us know how she responds to the meds in an upcoming video. Let's stay "healthy" everyone.
It is helpful to hear how you treat your patients for different problems. Seeing all the info you give in your videos put to action! Thanks and have a good day🙂🙋♀️
Thanks for sharing!
Very nice video, especially the sound effects to conceal information. One idea I had was to do a video of me responding to an acute stroke via telestroke but bleeping out all the data/sound from the other side of the call and the identifying information. I'm not sure this is kosher, but I could release it several months later to avoid any chance of the revealing the person's identity.
Thanks Dr. Beaber! I asked the patient if she was ok with me making the video and offered to show her the vid beforehand for her approval but she declined previewing it. I feel bad that several viewers found my bleeping out drug names to be disruptive, I was just overly concerned about maintaining privacy!
@@AaronBosterMD I think you did the right thing. Obviously, those details would mean nothing to me, but there could be someone in your area who knows her and some of the details of her condition, and even if she were open about her condition, she wouldn't necessarily want people to know about all of her symptoms or that she is experiencing a relapse. I changed some of the details of the people I interviewed in my book so it would be impossible to identify them (with the exception of one person who explicitly asked me not to since she is somewhat of a public figure and wanted people to know her story).
Thankyou for this video. It really hits home and Iwish the best for this lady,her husband and you. These are challenging times we are living in now. I know you will get this lady feeling better.
You are so welcome
@@AaronBosterMD My heart goes out to this lady because I've experienced some of what's she's going through and also she's an ms sister.
@@AaronBosterMD are you familiar with Matt Embry from Canada Aaron? If so I was wondering what your opinion of him is?
I realize I’m a bit late in seeing This video, but it hits so close to home that it’s a bit of believable. I am the woman that was always asking about Rituximab. I was on it, and I was not happy. I repeatedly got infections I just didn’t feel good.. I kind of dropped off the map after a pretty severe relapse in May 2019, That essentially took away my ability to walk. Thanks to watching your videos, I insisted on Nuero rehab, And I was making progress, but I just kept getting sick, which interfered with the whole process. I had enough PT to work on at Home, And we mutually decided that I would continue working at home until I’d goals we had set, and was ready for more. At home I wasn’t making much progress, continued to be sick over and over again, And even considered stopping that DMT. But I went ahead with The next infusion because I want to be on the highest tier DMT possible. Life went on, Except I started getting opportunistic infections, and was on many courses of antibiotics. In early January, this year, I had another relapse. It was so bizarre. It felt as if someone had injected my thighs with helium it felt they were moving up and down. I put my hands on my thighs and they were right on the chair where they should’ve been. I take my hands off and they would feel like they were floating up and down in the air. I thought it was just rather funny and my MS was acting up. My husband came in the house that I started telling him about it, and he immediately noted that I was severely slurring my speech. I immediately called our emergency triage system and they had me do a delightful 911 (delightfully sarcasm LOL) The paramedics showed up with a chair Gurney that you had to lift your legs up to get your feet on the step To get up onto the chair. The only problem was was that I could not lift either leg high enough to put my foot on the step. It was just one of those indignities of having MS. I got to stay in the hospital for three days to rule out stroke. It was a good thing that I have been working on all that Nuero rehab, Because I had been doing the exercises with both legs. This exacerbation affected the Other side of my body, in a very similar manner to the earlier exacerbation. It was a much easier process To be able to walk again; it helped that I trusted that the muscles would still hold me up from all that PT! It is time for DMT change, so I started Gilenya. Unfortunately, my body over reacted to that as well and my white blood cell count plummeted what is that
Thank you for sharing that example. I'm in a similar situation but symptoms are not unbearable so doc and I decided no treatment with steroids at this time. I really appreciate your videos and have been back and forth on idea of switching neurologist and think I will call your clinic and see if you are taking new patients and if you would treat, me, who is out of state using telemedicine. I will continue with my current neurologist but would like a second option on my current status after living with MS for approximately 28 years from a doctor who specializes in MS. Again thank you for all the educational videos you share with the world to better inform. For me knowledge is absolutely power. I am going to contact your clinic in case you don't have chance to respond to me here. :)
BosterMS.com
614-304-3444
This pandemic has GOTTA end soon. I’m going through an attack now effecting my eyes and I had an MRI 2 weeks ago and my MS clinic isn’t picking up or calling me back which is soooo unlike them. 🙃
Thanks for sharing Doc!~John 👍🏻
You bet!
Ha my comment was so long, I didn’t get to finish it. So my WBC was very low. I was told to stay at home before California shut down. My allergist/immunologist Got involved, because my immunoglobulin levels were all way below normal, I couldn’t make antibodies, and I was Again told to stay home, No visitors. It’s all probably a blessing In Disguise as I wasn’t exposed to the community spread that’s been going on. I have gone in to clinic once a month to have my port cleared. That’s considered essential apparently, and I was told to go with my N 95 mask (i’m asthmatic, we are in high fire risk area, I had 10 already and emergency supplies) And goggles. Most departments are still essentially shut down, So the exposure risk is limited. It’s pretty scary to go in though.... but it’s my once a month field trip LOL. The DMT switch was wonderful. I take My new DMT every other day, and my WBC is rising as well as my immunoglobulin levels. I’ll be tested again next month, and hopefully will have recovered enough to be able to make antibodies again. But it looks like I’ll be at home for the long-haul. That’s OK. Even though I have not had a complete recovery neurologically, I’m still working on it and getting better. Getting off the Rituximab was the key for me. Life is good, even in the middle of this crazy pandemic. I used to be a teacher, With a regular and a science credential. Unfortunately, the lack of science education and understanding in the American public is coming home to roost As as We are seeing incredible rise in cases of the virus, hospital and ICU Admissions as people have ignored public health recommendations......Thank you so much for your informative videos, and your positive Support Of MS patients. All over the world! Stay safe! Someone should write a book...MS in the Covid-19 Pandemic!
Thanks Aaron, I recently had the same situation, also went with high dose steroids but IV. Just wondering what is the rough time frame for your immune system to recover from corticosteroid treatment? Thanks.
Hi Dr Boster! thank you for the video - it’s very helpful content. One observation. I noticed you didn’t mention having an MRI done. Is that because of the pandemic, or another reason?
This is an important point. I actually feels it's NOT appropriate to obtain an MRI in this situation. I"ll make a video answering this question soon! TY for asking it.
I am starting Gylenia asap. I have my eye doctor appointment. I am leaving my house today for the last time for awhile. I am curious about how long I should be staying in the house for after I start my medicine? And should I plan on wearing a mask and gloves for the long term? I have decided to make this my last day out because i figure that since my eye appointment is the 15 that if I am exposed i would know before I start Gylenia. I have been taking precautions like wearing a mask and gloves when I go to the store.
How soon after the initial signs of a relapse should you ideally get treated?
From personal experience, I just finished a round of oral steroids. No change whatsoever...still have the same “new” symptoms. I did however have three rounds of the IV steroids last year and it knocked it out. Given the Covid Virus, I am very hesitant to go to the ER for IV steroids for obvious reasons.
giftboutiq . I would be hesitant to go to ER for steroids also!!! I wonder if they should have prescribed a higher foes of oral steroids 🤔
Scotty I have a teleconference with my neuro coming up....a follow-up actually to see what steps I need to take. My symptoms got worse.....my balance is extremely bad.....falling down a lot, slamming into walls and the headaches are fierce. Thank you for your thoughts. Stay safe...be well.
Sharing
Yes with oral roids
Yes! I still got it- 🤘🏻💪🏻
Dr. Boster, Is the amount of time you are delaying starting a new DMT dictated by the current DMT this patient is currently taking. Or are you wanting to stop the patient’s current flare up before starting a new DMT.
I have a question about the idea of a cytokine storm taking place with some COVID-19 sufferers and how similar this might be to what happens in MS. In others words, does this cytokine connection make MS sufferers more likely to have an immune system overreaction if they contract COVID-19? I realize it’s off the topic of this video but thought perhaps It could be part of a future video. I think a lot of MS sufferers are trying to figure out whether the fact that their immune system goes haywire with MS makes it more likely the same would happen with COVID-19. Thanks.
This concern is addressed in NMSS videos fyi
Dr. Boster, why would you not treat an exacerbation during COVID-19?
Can you please do a video on pseudobulbar affect
Yes this is in the works!
@@AaronBosterMD thank You! It's happening to me and I didn't realize it was a real thing, until I saw it on one of your videos. I thought I was losing my mind. Thank you for your time!
I've been doing really bad lately. All of my ms symptoms have gotten worse and I'm having extreme depression and anxiety and panic attacks. Honestly 2 days ago I thought I might die, but I survived just to get bitten by a tick the next day. I haven't been to any doctors because I'm afraid of Covid. I need something for my anxiety, but can't deal with talking to 4 or 5 therapists before getting help (and meds) from a psychiatrist. Things are so bad I was crying on my Dads gravestone last night.(didn't help). Anyway, I'm afraid now I might have Lyme Disease. Would antibiotics be given for this? Can a person with ms even take an antibiotic? Any help would be more than I've had in a long time. Really hoping ya get this.
you're not alone Mike. Yes there are antibiotics for lyme if that were to become necessary. I recommend you call your doctor's office and ask for a visit. I also would strongly recommend you seek out a counselor to help you process. You got this Mike and you are not alone out there.
I m in the same situation but I'm a diabetic so I can't take steroids I'm in severe pain to in my back I'm thinking about going to the emergency department so I can get relief
Dr Boster, I don't know what the fuss is about. If you want to bleep out information that is totally your call. The viewer can just deal with it.
Thank you. I didn't realize it was so bothersome to folks. I'll have to come up with some other plan...
I haven’t watched a video in awhile so can someone explain why certain words are bleeped our? Thanks in advance
I didn't want to reference any drug names or identifiable information for the patient. Sorry if it distracted from the content.
Aaron Boster MD thank you
Why the new noises. When talking about things.
I didn't want to reference the drug names or identifying information (such as her age). Sorry if it distracted from the content 😣
Aaron, thanks but this is not cool (my opinion)...don’t mind you protecting by not disclosing name or age but drugs its not cool 🤷🏻♂️
I'm sorry that it was so disruptive Paspalummad.
Aaron Boster MD Sorry, didn’t mean to offend you or anything...but knowing you who helped us so much with all the education etc. -suddenly disclosing drugs names, becoming a big story...this is what I didn’t like 🤷🏻♂️ and please this is only an honest opinion -not to judge you👍
Paspalummad I would agree.
First video I couldn't relate too. Hope the young lady is going to improve. As for sharing your experiences in order to not violate any Hipaa/demographics, instead of noises could you just speak of the patient and the patients partner. Nobody would know gender and as for the meds, is that a new thing?
Excellent suggestions, I'm sorry it didn't work as well as I intended Andrea.
@@AaronBosterMD ,I was going for constructive feedback not so much "complaining " did I miss the mark? Anyway, this was 1 out of hundreds, the odds are still very much in your favor!