Me too. I had my ovaries removed aged 44. Stayed on tablet form HRT until 5 years ago. Now I use gel it’s not so good. I’m ,63. I’m considering asking for it back. I had a battle with GP to stay on it.
Hi, I am too in HRT, and I use gel for the estrogen part. Called Divigel. My doctor finds it more safe for long term use, in comparison to tablets. I just use it for menopausal symptoms, and works fine. I hope that translates to the efficiency for MS related issues. Although I am stably progressing 😔
Looking forward to your findings. All your questions are what I always want to ask my neurologist but obviously never have enough time.
Will they cover anything about the ongoing effects of covid and the vaccinations on people with MS with and without dmts or is no one interested in that anymore?
Thanks again for all of your shared knowledge and thoughts.
I'm glad that we'll get to see your lectures. I also appreciate you talking about medical gaslighting. It's a bigger problem than a lot of people realise. I'll be attending the virtual Patient Community Day and hoping to learn a lot.
As an ex HCP I went to the dark side and worked at a senior level for one of those companies exhibiting at Medical conferences. I was astonished at the freebies offered to the delegates by Big Pharma especially...and I’m not just talking plastic pens. Happily that finished in the UK not long after I started - not entirely sure that’s the case in the US and elsewhere.
I really look forward to your feedback. I’m seeing my MS Consultant following an MRI sometime in November, so I’d love to swamp him with new information.
He may even be there as well, which would be even better! I’m sure he anticipates our meetings with great enthusiasm :). Actually, I think he does as I only ever see him and not the SpR, as would normally be the case.
So much here. I’d be very interested in the lung association. Both my parents smoked a lot until I was about 10. My sister who also had MS was was 14 when they stopped. had whooping cough aged 5. Now I have asthma. Diagnosed late as in my family we had to just get on with things when Ill. I had and still get bad coughing fits when I have viruses. I was told you don’t get asthma when you get older, it would have been there since childhood. Who knows. I was sent to school with whooping cough, and promptly sent home and the Dr was called out. I have a sibling in the middle who has no signs of MS. 🙏
Smoking was common in my parents generation. So if there’s a link you’d think less MS related to smoking now. Smokers are less. I doubt many smoke in pregnancy.
I like question 8. At the moment I’m looking for a gynecologist who is open to helping me to get HRT. It’s challenging. And I would love to see more activity here! Looking forward of course for the rest of your findings. And see you hopefully there! Birgit
That is a very complete list of questions. I’m looking forward to seeing the responses. I’ve never been offered HRT but have heard how it’s been beneficial for some
Woman and their MS.
Here in the USA pharma pays doctors based on their prescribing of DMT’s. I’m not talking about attending a conference and getting a free meal. Pro publica had a site that showed specifics with some getting paid 800k in as little as two years.
It really seems like a conflict of interest and sows the seeds of mistrust. Are they prescribing what is truly in your best interest or theirs.
Thanks for all the great topics and looking forward to hearing about the conference!
Zero discussion about managing and stopping symptoms as usual
Seems like no one is working on how to deal with / stop symptoms.
Remylination will help no doubt but that is the holy grail
I want someone to work on a symptom treatment option without us just being thrown a bunch of drugs that may or may not work. I’ve tried lyrica, Tegretol and zero help.
Looking forward to reading/listening to some of your feedback from the conference. Detail about HRT would be useful - form of medication and dose, ie pessaries, tablet, patch, gel? Also still banging on about utis and pevention/appropriate treatment/home testing. Dealing with this is so much more difficult if your mobility is poor. It would be helpful if there was some sort of collection and delivery service (to/fromlocal GP and pharmacy) without having to rely on other (busy) family members.
Please it would be great if you can record some of yours. For us to watch back some of these on the site costs about $1000 or £600 which is lots just for a patient. So if you could voice record some that would be amazing for us patients
I’m wondering what’s new for PPMS research - especially after the Tisch MS Center identified something in the spinal fluid of PPMS patients that is not present in the other types. Could this be a different disease? What’s most promising in forthcoming treatments?
Enjoy the conference. Anything you will be willing to share would be useful 🙂. Feeling so jealous that I can't be there although I am living in Copenhagen. Looking forward to more news 😀
I’m newly diagnosed at 45. Despite being advised I likely have RRMS, my persistent dizziness and declining walking distances raise concerns about a progressive element. I have two new brain lesions in the last few months and stable lesions on cervical spine.
I am considering treatment options (ocrevus or HSCT) and very concerned about the possibility of either of these treatments accelerating my disability. You were asked a very similar question on January 3rd and referred to a previous post about smouldering MS. I understand that whatever symptoms my spinal lesions may have in store for me is ‘in the post’ and it is inevitable that my disability will progress. I understand that any treatment I do undertake would be to inhibit any new lesions from forming. While you discuss neurotoxicity with respect to HSCT, is the same true for Ocrevus? While I’m aware that more often than not people see a net benefit with ocrevus, I frequently see patients report on social media that the rate with which their disability progressed accelerated after Ocrevus. I’m afraid of accelerating my symptoms. Can you offer any explanation as to why some people are reporting accelerated decline on ocrevus?
I would like to hear more about HRT in post-menopausal women with MS.
Enjoy the meeting!
Thanks
https://gavingiovannoni.substack.com/p/is-it-ms-or-is-the-menopause
Me too. I had my ovaries removed aged 44. Stayed on tablet form HRT until 5 years ago. Now I use gel it’s not so good. I’m ,63. I’m considering asking for it back. I had a battle with GP to stay on it.
https://gavingiovannoni.substack.com/p/is-it-ms-or-is-the-menopause
How can I find out about the difference between gel and tablets ?are the gels less potent, as in weaker.
Hi, I am too in HRT, and I use gel for the estrogen part. Called Divigel. My doctor finds it more safe for long term use, in comparison to tablets. I just use it for menopausal symptoms, and works fine. I hope that translates to the efficiency for MS related issues. Although I am stably progressing 😔
Same!!
It's a big list and much to discuss. Lots to unpack.
I am interested to understand when and why HRT would be prescribed to post-menopausal women with MS.
Enjoy the conference and looking forward to your updates.
Looking forward to your findings. All your questions are what I always want to ask my neurologist but obviously never have enough time.
Will they cover anything about the ongoing effects of covid and the vaccinations on people with MS with and without dmts or is no one interested in that anymore?
Thanks again for all of your shared knowledge and thoughts.
I'm glad that we'll get to see your lectures. I also appreciate you talking about medical gaslighting. It's a bigger problem than a lot of people realise. I'll be attending the virtual Patient Community Day and hoping to learn a lot.
As an ex HCP I went to the dark side and worked at a senior level for one of those companies exhibiting at Medical conferences. I was astonished at the freebies offered to the delegates by Big Pharma especially...and I’m not just talking plastic pens. Happily that finished in the UK not long after I started - not entirely sure that’s the case in the US and elsewhere.
I really look forward to your feedback. I’m seeing my MS Consultant following an MRI sometime in November, so I’d love to swamp him with new information.
He may even be there as well, which would be even better! I’m sure he anticipates our meetings with great enthusiasm :). Actually, I think he does as I only ever see him and not the SpR, as would normally be the case.
Enjoy the meeting!
I’d be interested to know if there is any research around smouldering MS and brain volume loss.
Also any connections between trauma or childhood ACE’s and the later development of MS.
Many thanks for your continued work.
Best wishes
Fatma
So much here. I’d be very interested in the lung association. Both my parents smoked a lot until I was about 10. My sister who also had MS was was 14 when they stopped. had whooping cough aged 5. Now I have asthma. Diagnosed late as in my family we had to just get on with things when Ill. I had and still get bad coughing fits when I have viruses. I was told you don’t get asthma when you get older, it would have been there since childhood. Who knows. I was sent to school with whooping cough, and promptly sent home and the Dr was called out. I have a sibling in the middle who has no signs of MS. 🙏
Smoking was common in my parents generation. So if there’s a link you’d think less MS related to smoking now. Smokers are less. I doubt many smoke in pregnancy.
I like question 8. At the moment I’m looking for a gynecologist who is open to helping me to get HRT. It’s challenging. And I would love to see more activity here! Looking forward of course for the rest of your findings. And see you hopefully there! Birgit
That is a very complete list of questions. I’m looking forward to seeing the responses. I’ve never been offered HRT but have heard how it’s been beneficial for some
Woman and their MS.
Here in the USA pharma pays doctors based on their prescribing of DMT’s. I’m not talking about attending a conference and getting a free meal. Pro publica had a site that showed specifics with some getting paid 800k in as little as two years.
It really seems like a conflict of interest and sows the seeds of mistrust. Are they prescribing what is truly in your best interest or theirs.
Thanks for all the great topics and looking forward to hearing about the conference!
Sounds great!
Zero discussion about managing and stopping symptoms as usual
Seems like no one is working on how to deal with / stop symptoms.
Remylination will help no doubt but that is the holy grail
I want someone to work on a symptom treatment option without us just being thrown a bunch of drugs that may or may not work. I’ve tried lyrica, Tegretol and zero help.
Looking forward to reading/listening to some of your feedback from the conference. Detail about HRT would be useful - form of medication and dose, ie pessaries, tablet, patch, gel? Also still banging on about utis and pevention/appropriate treatment/home testing. Dealing with this is so much more difficult if your mobility is poor. It would be helpful if there was some sort of collection and delivery service (to/fromlocal GP and pharmacy) without having to rely on other (busy) family members.
Please it would be great if you can record some of yours. For us to watch back some of these on the site costs about $1000 or £600 which is lots just for a patient. So if you could voice record some that would be amazing for us patients
I’m wondering what’s new for PPMS research - especially after the Tisch MS Center identified something in the spinal fluid of PPMS patients that is not present in the other types. Could this be a different disease? What’s most promising in forthcoming treatments?
Enjoy the conference. Anything you will be willing to share would be useful 🙂. Feeling so jealous that I can't be there although I am living in Copenhagen. Looking forward to more news 😀
I’m newly diagnosed at 45. Despite being advised I likely have RRMS, my persistent dizziness and declining walking distances raise concerns about a progressive element. I have two new brain lesions in the last few months and stable lesions on cervical spine.
I am considering treatment options (ocrevus or HSCT) and very concerned about the possibility of either of these treatments accelerating my disability. You were asked a very similar question on January 3rd and referred to a previous post about smouldering MS. I understand that whatever symptoms my spinal lesions may have in store for me is ‘in the post’ and it is inevitable that my disability will progress. I understand that any treatment I do undertake would be to inhibit any new lesions from forming. While you discuss neurotoxicity with respect to HSCT, is the same true for Ocrevus? While I’m aware that more often than not people see a net benefit with ocrevus, I frequently see patients report on social media that the rate with which their disability progressed accelerated after Ocrevus. I’m afraid of accelerating my symptoms. Can you offer any explanation as to why some people are reporting accelerated decline on ocrevus?