Speaking for myself, it would be nice to have some of the professionals come to me with things that could improve my life rather than me having to research them & ask the professionals to provide or obtain them for me. I was diagnosed RRMS in 94, SPMS 2014ish. No treatment for MS apart from symptomatic, none until Siponimod in 2021. Have had to ask for amantadine, modafinil, tizanidine, etc, etc. Still waiting, 4 years now for sativex. I often feel abandoned.
Truly integrated care for people with advancing disease. Like the ALS clinics in the US. Every MS center should have an infectious disease person, a psychiatrist, a urologist, a PT and OT person, a pulmonologist,... tired of coordinating all of the specialists myself
A treatment to stop the neuro-degeneration which leads to increasing disability (probably covered by your smouldering MS point). So an MSer at EDSS 4 (as an example) would get no worse. They would remain in employment, less stress on relationships, reduced need for neuro appointments / MS nurse visits, improved mental health etc.
Diagnosis. I’ve heard and myself experienced years of testing before a Dr. finally diagnosed me. People are suffering greatly due to antiquated testing and retesting for MS. Next is pain. The pain caused by MS is often not acknowledged by doctors and advocates. Even your lists of symptoms skips right over it and undertreated/untreated pain is leading people to give up. I know people who have committed suicide due to ignorance of MS PAIN.
More research on PPMS so that those of us with this can have some hope of a slowing (or even stopping) of progression. It would also be good if trials could be open to those over the age of 70 who are still relatively fit and have possibly 20-30 years of life left to live.
In the UK, the serious under-staffing of MS departments in hospitals. The shortage of staff means very limited access specialist MS nurses and GPs are largely relatively ignorant of the needs of PwMS in my experience. Just someone to turn to for advice and help with symptoms would be a huge help.
Apr 27, 2023·edited Apr 27, 2023Liked by Gavin Giovannoni
1. Antivirals
2. Antivirals
3. Antivirals (I'm saving to buy some, which ones? 😁
4. Antivirals
5. Antivirals
6. Antivirals
7. Hepatitis b sounds nice, i bet Antivirals are nice.
8. Any kind of Antivirals will do.
9. Maybe I'll become a sex worker
10. No, but joke aside - also Steroids for relapses. I went through relapses during covid abd they wouldn't give me anything.
- Also GPs are very "its not ms, ms is rare" and happy to fob you off with b12 deficiency excuses when Its ABSOLUTELY urgent mri is needed.
- Also gps do not look at neurological symptoms dispersed in time to determine a need to refer for mri urgently - they dont think ok numb hands at todays visit but hang on this person had optic neuritis last year (!)
What I find completely insane is that there is a cure but not many are willing to believe it- including the Neuros
Fifteen years ago I spent $40 000 USD on a MSC transplant done by Prof Slavin in Israel. At the time I’d had MS for 10 years, I had many issues, my left leg was unable to lift at all. And I was going downhill rapidly.
Within a month of the stem cell (not HSCT) I was running again.
My neurologist refused to acknowledge my improvement until five years later when I was still relapse free and my prior disabilities nearly all gone. He called me to find out more about the stem cell. But at 6 years post MSC I relapsed. MSC had gone up to over $100 000 USD so I did research and took lemtrada. Ten years since taking it I’ve been relapse free and pretty much every symptom is gone.
Many people and doctors know my story, I’ve been in the media, but still people get diagnosed with MS and are never offered these more effective treatments.
I consider myself now cured. At fifty I’ve taken up running again and can easily run 3 km in the tropics- heat is no longer an issue for me.
I tell everyone to do what I did and aggressively fight back but my advice seems to fall on deaf years and then I have to watch people I care about get sicker and sicker. Why???
I know some treatments are expensive, but so are wheelchairs and not being able to walk and modifying houses and cars.
It is said an MS patient is worth three million dollars to the health care system over a lifetime-does it not make more financial sense to use these proven, but perhaps initially costly treatments straight up?
Treatment for those with paediatric MS. So few studies being done and it relies on getting a brave paediatric neurologist to offer high efficacy therapy early on. Plus this group need input for help with schooling, exams and psychological support and yet largely this is totally lacking.
Knowledge, people should know more and understand that now it s different disease than 20 years ago (and I mean also neurologist - when I was in the hospital with my first relapse and half of my body was completely numb and even though I m also a doctor - but radiologist so neurology I only remember from uni classes, after 7 days of solumedrol my neurologist told me that now there is no chance that it will improve - two months later I feel like a totally healthy person)
High efficacy DMT even for young, stable and newly diagnosed (they wanted to give me dimethyl fumarate or interferon because I wasn’t sick enough (multiple lesions in MRI, present oligoclonal bands in CSF, and relapse) 🤦🏼♀️, so I wrote myself a prescription and paid for ofatumumab by myself but I m sure most of the people can’t afford it and they trust in everything what their doctor says
In order, I would say flip the pyramid, antiviral trials for smouldering MS and symptomatic treatment. Like many here, at age 70, it took years to get a proper diagnosis. Then, just like that! I was “cured” with NEID according to a very prestigious medical facility here in the states! Within a few years, I was racing downhill in the proverbial hand basket diagnosed with SPMS. I have been fortunate at my age to have lucked into finding an empathic neurologist who believes that SPMS is real, despite NEID, and is aggressive at treating symptoms. I saw her last week and she said (I am serious) no wonder you can’t sleep. Your spasticity (and tremor) is so severe, I don’t know how you are living with this. I couldn’t! (Well, I don’t know how we live with this either…) She shot my back and neck contracture up with botox and ordered medication for sleep. (She wanted to order a sleep medication that could not be approved since I use valium for bladder issues. (Unfortunately, baclofen, which I took for so many years, caused severe aphasic problems, so valium is it.) I concur with those of us here who are older that trials for antivirals are extremely important, especially when we had delayed diagnoses or were denied the most effective DMTs early on. If I were young and had my life in front of me, I’d take the most effective DMT I could get my hands on. (Or get someone to put that IV in my vein!) I think I’ve shared previously that when I was on a high dose chemotherapy trial, the second phase of high doses of cyclophosphamide put me in complete remission from RRMS for several years although it wasn’t fun. Always, many thanks, Prof G. And much thanks the support on this site.🌷
😄👌Our greatest unmet need is the acknowledgment that neurology is in medieval times. Our donation is our bodies and we end up like Michael Jackson’s Thriller. So much medicine for nothing?
Apr 28, 2023·edited Apr 28, 2023Liked by Gavin Giovannoni
Thank you Prof G. For me the answer would have to be ‘early aggressive medication’ - this would have made a big difference to my condition. I too believe strongly in #4 - focussing on the marginal gains I can get and do get by practicing multiple lifestyle ‘enhancers’ - I wish others with MS knew these daily habits do help but unfortunately I / others only really start them when their MS is already advanced.
Speaking for myself, it would be nice to have some of the professionals come to me with things that could improve my life rather than me having to research them & ask the professionals to provide or obtain them for me. I was diagnosed RRMS in 94, SPMS 2014ish. No treatment for MS apart from symptomatic, none until Siponimod in 2021. Have had to ask for amantadine, modafinil, tizanidine, etc, etc. Still waiting, 4 years now for sativex. I often feel abandoned.
Truly integrated care for people with advancing disease. Like the ALS clinics in the US. Every MS center should have an infectious disease person, a psychiatrist, a urologist, a PT and OT person, a pulmonologist,... tired of coordinating all of the specialists myself
A treatment to stop the neuro-degeneration which leads to increasing disability (probably covered by your smouldering MS point). So an MSer at EDSS 4 (as an example) would get no worse. They would remain in employment, less stress on relationships, reduced need for neuro appointments / MS nurse visits, improved mental health etc.
Diagnosis. I’ve heard and myself experienced years of testing before a Dr. finally diagnosed me. People are suffering greatly due to antiquated testing and retesting for MS. Next is pain. The pain caused by MS is often not acknowledged by doctors and advocates. Even your lists of symptoms skips right over it and undertreated/untreated pain is leading people to give up. I know people who have committed suicide due to ignorance of MS PAIN.
More research on PPMS so that those of us with this can have some hope of a slowing (or even stopping) of progression. It would also be good if trials could be open to those over the age of 70 who are still relatively fit and have possibly 20-30 years of life left to live.
In the UK, the serious under-staffing of MS departments in hospitals. The shortage of staff means very limited access specialist MS nurses and GPs are largely relatively ignorant of the needs of PwMS in my experience. Just someone to turn to for advice and help with symptoms would be a huge help.
1. Antivirals
2. Antivirals
3. Antivirals (I'm saving to buy some, which ones? 😁
4. Antivirals
5. Antivirals
6. Antivirals
7. Hepatitis b sounds nice, i bet Antivirals are nice.
8. Any kind of Antivirals will do.
9. Maybe I'll become a sex worker
10. No, but joke aside - also Steroids for relapses. I went through relapses during covid abd they wouldn't give me anything.
- Also GPs are very "its not ms, ms is rare" and happy to fob you off with b12 deficiency excuses when Its ABSOLUTELY urgent mri is needed.
- Also gps do not look at neurological symptoms dispersed in time to determine a need to refer for mri urgently - they dont think ok numb hands at todays visit but hang on this person had optic neuritis last year (!)
What I find completely insane is that there is a cure but not many are willing to believe it- including the Neuros
Fifteen years ago I spent $40 000 USD on a MSC transplant done by Prof Slavin in Israel. At the time I’d had MS for 10 years, I had many issues, my left leg was unable to lift at all. And I was going downhill rapidly.
Within a month of the stem cell (not HSCT) I was running again.
My neurologist refused to acknowledge my improvement until five years later when I was still relapse free and my prior disabilities nearly all gone. He called me to find out more about the stem cell. But at 6 years post MSC I relapsed. MSC had gone up to over $100 000 USD so I did research and took lemtrada. Ten years since taking it I’ve been relapse free and pretty much every symptom is gone.
Many people and doctors know my story, I’ve been in the media, but still people get diagnosed with MS and are never offered these more effective treatments.
I consider myself now cured. At fifty I’ve taken up running again and can easily run 3 km in the tropics- heat is no longer an issue for me.
I tell everyone to do what I did and aggressively fight back but my advice seems to fall on deaf years and then I have to watch people I care about get sicker and sicker. Why???
I know some treatments are expensive, but so are wheelchairs and not being able to walk and modifying houses and cars.
It is said an MS patient is worth three million dollars to the health care system over a lifetime-does it not make more financial sense to use these proven, but perhaps initially costly treatments straight up?
For me it’s management of symptoms
We have a great big list of DMTs and how they work etc
For daily symptoms the process is
Try this one. Oh it’s got xyz side affect and might cause dementia for prolonged use
Ok try this instead. Oh but you’ll be having a sedative affect most of the time and dry mouth
Ok try this one. But there’s potential risks for xyz
We need something to manage neuropathy, daily symptoms, MS hug etc
Enough just throwing meds at us. Do proper trials and find the top 3 or so that actually work. Or make new ones! All our symptom meds are decades old
A proper diagnosis would be a good start. People are left unable to have disease modifying drugs or join trials.
Treatment for those with paediatric MS. So few studies being done and it relies on getting a brave paediatric neurologist to offer high efficacy therapy early on. Plus this group need input for help with schooling, exams and psychological support and yet largely this is totally lacking.
Knowledge, people should know more and understand that now it s different disease than 20 years ago (and I mean also neurologist - when I was in the hospital with my first relapse and half of my body was completely numb and even though I m also a doctor - but radiologist so neurology I only remember from uni classes, after 7 days of solumedrol my neurologist told me that now there is no chance that it will improve - two months later I feel like a totally healthy person)
High efficacy DMT even for young, stable and newly diagnosed (they wanted to give me dimethyl fumarate or interferon because I wasn’t sick enough (multiple lesions in MRI, present oligoclonal bands in CSF, and relapse) 🤦🏼♀️, so I wrote myself a prescription and paid for ofatumumab by myself but I m sure most of the people can’t afford it and they trust in everything what their doctor says
In order, I would say flip the pyramid, antiviral trials for smouldering MS and symptomatic treatment. Like many here, at age 70, it took years to get a proper diagnosis. Then, just like that! I was “cured” with NEID according to a very prestigious medical facility here in the states! Within a few years, I was racing downhill in the proverbial hand basket diagnosed with SPMS. I have been fortunate at my age to have lucked into finding an empathic neurologist who believes that SPMS is real, despite NEID, and is aggressive at treating symptoms. I saw her last week and she said (I am serious) no wonder you can’t sleep. Your spasticity (and tremor) is so severe, I don’t know how you are living with this. I couldn’t! (Well, I don’t know how we live with this either…) She shot my back and neck contracture up with botox and ordered medication for sleep. (She wanted to order a sleep medication that could not be approved since I use valium for bladder issues. (Unfortunately, baclofen, which I took for so many years, caused severe aphasic problems, so valium is it.) I concur with those of us here who are older that trials for antivirals are extremely important, especially when we had delayed diagnoses or were denied the most effective DMTs early on. If I were young and had my life in front of me, I’d take the most effective DMT I could get my hands on. (Or get someone to put that IV in my vein!) I think I’ve shared previously that when I was on a high dose chemotherapy trial, the second phase of high doses of cyclophosphamide put me in complete remission from RRMS for several years although it wasn’t fun. Always, many thanks, Prof G. And much thanks the support on this site.🌷
😄👌Our greatest unmet need is the acknowledgment that neurology is in medieval times. Our donation is our bodies and we end up like Michael Jackson’s Thriller. So much medicine for nothing?
https://www.youtube.com/watch?v=9jqOY1Us_ZM
Effective drugs for PPMS, faster diagnosis of PPMS, speed of clinical trials, drugs that target EBV in MS. That's what we need.
Thank you Prof G. For me the answer would have to be ‘early aggressive medication’ - this would have made a big difference to my condition. I too believe strongly in #4 - focussing on the marginal gains I can get and do get by practicing multiple lifestyle ‘enhancers’ - I wish others with MS knew these daily habits do help but unfortunately I / others only really start them when their MS is already advanced.