I see a neurologist yearly, but the appointment is a waste of time. The neurologist spends at most five minutes with me and says he has nothing to offer me. Is there anything I can do?
Perhaps the start of a solution is to address the phrase “ who are forced to stop their existing DMT” - no matter how aggressive or genius a neurologist is, if the insurance industry throws in the towel, the fight is over.
The same happens in the NHS. If NHS England audit a centre and find people with MS on DMTs inappropriately they particular trust has to reimburse NHS England the costs of the drugs. This is why we can't prescribe DMTs outside of NHS England's guidance.
The pseudo-market system has a lot to answer for. How about penalising hospitals for wasting energy instead of trying to make sick people better?
My frequent attendance over the years has taught me that is a consistently serious issue.
The unspeakable sums thrown away on poorly conceived and executed NHS IT projects would more than cover these costs. Different pot though. Market forces you see...
I am in South Wales so to be given the chance to attend one of your road shows on line would be amazing as your knowledge on this illness allows us to be more up to date with treatments, symptoms etcetera you give me more information than my own Neurologist and I,m certain many many others unable to attend your clinics would be most grateful if you could do this Thankyou
What’s gone wrong with MS research? 10-15 years ago the buzz was around stem cells for repair (Prof Scolding leading on this), remyelination (Biogen) and neuroprotection (MS Smart trial and others). In 2022 advanced MS patients are given sewing kits! Until smouldering MS and EBV infection is properly tackled, the electric wheelchair manufacturers will see their revenues continue to grow. Has the Progressive MS Alliance delivered anything?
Is it ordinary with other conditions, like cancer for example, to just therapeutically speaking throw your hands up and stop trying?
Does NICE suggest with any other chronic conditions that there is a point that the treating physician just moves them from active attempts to make life better and more bearable to giving up?
I immediately thing of the well publicised appeals for incredibly expensive, still in trial, cancer medications that may serve to prolong life another 3 months. The furore and indignant responses apparent foot dragging incurs, the horror that a huge team of medical professionals can generate when the decision is made to end the care of a child who is only alive because of artificial interventions.
People with MS gently rotting away? So what. It is absurd. Perhaps we need to rebrand MS with some sort of air of death for it is only the concept of delaying death that seems to get attention.
Really, if we could tint treating MS as delaying the inevitability of death (ironically, the one thing we all have in common) then perhaps it would be taken more seriously?
Dominic, I’d say that’s an excellent comment. Very very well put. Particularly the cancer drugs that may give another 3 months. I understand perhaps emotionally that makes sense to some, but I’ve had cancer, and that seems silly to me. My opinion only.
I also think Dominic comment is excellent and your response, as someone who has had cancer, reinforces this.
Perhaps there such be the same sort of public campaigning for MS; highlighting facts such that MS is one, if not the leading cause of disability in the young. Also that research evidence is showing that starting the most effective treatments early and maintaining treatment slows progression. The appalling state of the social care system can also be referenced - the fitter and less disabled we all are, the less of a burden/demand we will be on services for the elderly.
I wish that the charities would take this up and that NICE and the NHS would reconsider their stance - MS like everything else should be approached and managed as: prevention is better than cure!
Fiona, it’s very true. One would think they’d want us to be functioning at our optimum! But there’s a catch here. The better you “look”, the worse it can be. I’ve said this before; you’d think your physician would appreciate that it takes a huuuge effort to get a little makeup on and look halfway decent, but that can backfire. “You look great!” As things go downhill, this gets less frequent. :/
“What I say to my colleagues and the wider medical community, instead of assuming MS is not modifiable beyond a certain stage, should we not at least try and salvage upper limb function in people with more advanced MS?”
Goodness I wish you were my neurologist. Maybe it’s the clocks changing and the darker days, but feeling particularly ‘left to get on with it’ at the moment. Been told I will likely have a slower progression downhill than some but that there is no treatment. I am now beginning to feel weakness in ‘good’ leg and some arm/hand weakness. I keep up w MSGym work, all the other self management techniques, have just applied to Medical Cannabis Clinic but haven’t been on any other drugs so have failed that one. I do agree that anything that might slow progression will help me stay reasonably independent but Shropshire and QEH neuro not helping so far. MSNurse nice but no DMTs. It is hard some days to keep a positive look! Trail sounds old to me.
How do I find out when/where your MS roadshows are, please?
I completely agree, don't throw patients away, let them decide when they're ready to give up on treatment. And preserving hand use, speech, etc, is definitely worth it for individuals. It's quality of life.
We will let you know. It is clear from last night's event that most people prefer attending online. So we may do the roadshows online, which will allow more people to attend.
I remember going to a Wheel Chair Sales Convention in Atlanta. I was employed and gung-ho to continue on after my recent increased symptoms, regardless. The owner of my company was BB&T (now defunct), and they were a sponsor of the MS Society. I thought “great!”. At the convention I saw a demonstration of a totally automated device which would take you from wheeling around to being upright, and I thought how I would be able to continue to do what I was trained for (with a PhD), regardless. That was in 1996. Turns out my problems would not be functional but discriminatory. I ended up suing BB&T and eventually gave up hopes for work I had deeply planned for, and settled for SSDI $ with Medicare. (Side Note- there’s a lot you can do to legally earn $ on your own while keeping Medicare and SS, so don’t automatically count any of that out!)
This is my lead-in to describing that I was on Betaseron for 23 years, Ocrevus for one, then stopped when Covid came along. NEDA since 2002. I have not re-started anything. I’ve been walking ever since 1997, although there is something going on with PTTD, Peroneal Muscles, compressed nerve due to gait, and MS (I suppose) in my lower leg. There is also something going on with urinary urgency, frequency and residual; all as consequence of enlarged prostrate, partly distended blader, and of course MS (I suppose).
The topic covered today is right up my alley and gives me data to reflect on and discuss with my new doctor (see below).
Brief conclusion- (1) things don’t always go as planned (ad nauseam), but you can make the best of it, and (2) for this post by Dr. G - there is so much that can go on once you begin getting older, it can get frustrating and confusing, all over again. Finally, I am scheduled to see an MS Expert (new one) next month (been in the “business” years). I have a Word file dedicated to notes that I’ll summarize before I see him, to up my chances of getting my concerns answered.. Hopefully he is more up on the SPMS stuff than I am, although I do read a lot here. Maybe he has a couple tricks up his sleeve and can help me sort things out! :-)
Will I continue on? Fall apart? How bad will it really get? How long can I live? The questions and uncertainties have returned like in the old days, somewhat. But not nearly the pressures; I know a lot how it went. Grumble, grumble :-(
It’s absolutely worth protecting what is still ‘working’ - protect with drugs, exercise, whatever marginal gains you can do to delay deterioration - our quality of life, our hope, our mental state needs this otherwise what’s the point really. We need bigger and longer studies and trials - unfortunately it seems to come down to budget and lack of prioritisation. An online discussion / roadshow would be great.
I was “advised” to stop my DMT when I showed neid. “You’re fine.” This case sounds quite typical here in the States. I will be 70 in Dec. My neuro, who believes in smouldering MS, was going to put me back on an older school DMD (not interferon beta!!) as you, Prof G, have suggested. However, since May, I’ve developed some kind of rapidly worsening anemia, so she has declined prescribing any DMD at all. She and the urologist are concerned. Does anyone else, including my PCP care? Not particularly! I’m definitely looking forward to your meetings and trials, even though I’m not a prospect for trials. It sounds wonderfully informative and necessary to the MS community everywhere. Thank you so much for this.
Nov 4, 2022·edited Nov 4, 2022Liked by Gavin Giovannoni
Hi Prof G, I'm taking Aubagio and it seems is causing me carpal tunnel on my left hand. In your esperienze aubagio can give pain, carpal tunnel, tingling, numbness on hands? Or it's only my 23 mm lesion on c2-c3?
Not aware of Aubagio causing a carpal tunnel syndrome. I can't give an opinion on anything that requires a neurological examination and review of investigations. You need to see your neurologist.
Have carpal tunnel and peroneal neuropathy which is a form of peripheral neuropathy, I guess. Both developed during betaseron. but I think it had to do (at least in part) with physical activity. I did Betaseron (23 years) and a brief stint on ocrevus until covid. Never did aubagio.
I’ve had PPMS since 2003 am currently 69 years old with an EDSS of c6 .5. Upper body goodish. I’ve never been eligible for a DMD so therefor the notion of continuance of treatment is non-applicable. To preserve upper. Body function what does Professor G suggest in my another such cases?
Email comment:
Perhaps the start of a solution is to address the phrase “ who are forced to stop their existing DMT” - no matter how aggressive or genius a neurologist is, if the insurance industry throws in the towel, the fight is over.
The same happens in the NHS. If NHS England audit a centre and find people with MS on DMTs inappropriately they particular trust has to reimburse NHS England the costs of the drugs. This is why we can't prescribe DMTs outside of NHS England's guidance.
The pseudo-market system has a lot to answer for. How about penalising hospitals for wasting energy instead of trying to make sick people better?
My frequent attendance over the years has taught me that is a consistently serious issue.
The unspeakable sums thrown away on poorly conceived and executed NHS IT projects would more than cover these costs. Different pot though. Market forces you see...
I am in South Wales so to be given the chance to attend one of your road shows on line would be amazing as your knowledge on this illness allows us to be more up to date with treatments, symptoms etcetera you give me more information than my own Neurologist and I,m certain many many others unable to attend your clinics would be most grateful if you could do this Thankyou
If we do the roadshows virtually rather than face-2-face then you will be able to attend. I will speak to our group and get back to you on this.
Thank you so much
What’s gone wrong with MS research? 10-15 years ago the buzz was around stem cells for repair (Prof Scolding leading on this), remyelination (Biogen) and neuroprotection (MS Smart trial and others). In 2022 advanced MS patients are given sewing kits! Until smouldering MS and EBV infection is properly tackled, the electric wheelchair manufacturers will see their revenues continue to grow. Has the Progressive MS Alliance delivered anything?
Yes, you are right. We have been hoodwinked by the anti-CD20 Kool aid into thinking MS is sorted by most patients becoming NEIDA on anti-CD20.
https://gavingiovannoni.substack.com/p/anti-cd20-kool-aid-and-covid-19-vaccines
Is it ordinary with other conditions, like cancer for example, to just therapeutically speaking throw your hands up and stop trying?
Does NICE suggest with any other chronic conditions that there is a point that the treating physician just moves them from active attempts to make life better and more bearable to giving up?
I immediately thing of the well publicised appeals for incredibly expensive, still in trial, cancer medications that may serve to prolong life another 3 months. The furore and indignant responses apparent foot dragging incurs, the horror that a huge team of medical professionals can generate when the decision is made to end the care of a child who is only alive because of artificial interventions.
People with MS gently rotting away? So what. It is absurd. Perhaps we need to rebrand MS with some sort of air of death for it is only the concept of delaying death that seems to get attention.
Really, if we could tint treating MS as delaying the inevitability of death (ironically, the one thing we all have in common) then perhaps it would be taken more seriously?
Dominic, I’d say that’s an excellent comment. Very very well put. Particularly the cancer drugs that may give another 3 months. I understand perhaps emotionally that makes sense to some, but I’ve had cancer, and that seems silly to me. My opinion only.
I also think Dominic comment is excellent and your response, as someone who has had cancer, reinforces this.
Perhaps there such be the same sort of public campaigning for MS; highlighting facts such that MS is one, if not the leading cause of disability in the young. Also that research evidence is showing that starting the most effective treatments early and maintaining treatment slows progression. The appalling state of the social care system can also be referenced - the fitter and less disabled we all are, the less of a burden/demand we will be on services for the elderly.
I wish that the charities would take this up and that NICE and the NHS would reconsider their stance - MS like everything else should be approached and managed as: prevention is better than cure!
Fiona, it’s very true. One would think they’d want us to be functioning at our optimum! But there’s a catch here. The better you “look”, the worse it can be. I’ve said this before; you’d think your physician would appreciate that it takes a huuuge effort to get a little makeup on and look halfway decent, but that can backfire. “You look great!” As things go downhill, this gets less frequent. :/
“What I say to my colleagues and the wider medical community, instead of assuming MS is not modifiable beyond a certain stage, should we not at least try and salvage upper limb function in people with more advanced MS?”
Goodness I wish you were my neurologist. Maybe it’s the clocks changing and the darker days, but feeling particularly ‘left to get on with it’ at the moment. Been told I will likely have a slower progression downhill than some but that there is no treatment. I am now beginning to feel weakness in ‘good’ leg and some arm/hand weakness. I keep up w MSGym work, all the other self management techniques, have just applied to Medical Cannabis Clinic but haven’t been on any other drugs so have failed that one. I do agree that anything that might slow progression will help me stay reasonably independent but Shropshire and QEH neuro not helping so far. MSNurse nice but no DMTs. It is hard some days to keep a positive look! Trail sounds old to me.
*trial sounds good to me….!
well should probably have done 20 years ago, knowing what I know now. 65 EDSS 6 SPMS
oh, great outcome
How do I find out when/where your MS roadshows are, please?
I completely agree, don't throw patients away, let them decide when they're ready to give up on treatment. And preserving hand use, speech, etc, is definitely worth it for individuals. It's quality of life.
We will let you know. It is clear from last night's event that most people prefer attending online. So we may do the roadshows online, which will allow more people to attend.
I remember going to a Wheel Chair Sales Convention in Atlanta. I was employed and gung-ho to continue on after my recent increased symptoms, regardless. The owner of my company was BB&T (now defunct), and they were a sponsor of the MS Society. I thought “great!”. At the convention I saw a demonstration of a totally automated device which would take you from wheeling around to being upright, and I thought how I would be able to continue to do what I was trained for (with a PhD), regardless. That was in 1996. Turns out my problems would not be functional but discriminatory. I ended up suing BB&T and eventually gave up hopes for work I had deeply planned for, and settled for SSDI $ with Medicare. (Side Note- there’s a lot you can do to legally earn $ on your own while keeping Medicare and SS, so don’t automatically count any of that out!)
This is my lead-in to describing that I was on Betaseron for 23 years, Ocrevus for one, then stopped when Covid came along. NEDA since 2002. I have not re-started anything. I’ve been walking ever since 1997, although there is something going on with PTTD, Peroneal Muscles, compressed nerve due to gait, and MS (I suppose) in my lower leg. There is also something going on with urinary urgency, frequency and residual; all as consequence of enlarged prostrate, partly distended blader, and of course MS (I suppose).
The topic covered today is right up my alley and gives me data to reflect on and discuss with my new doctor (see below).
Brief conclusion- (1) things don’t always go as planned (ad nauseam), but you can make the best of it, and (2) for this post by Dr. G - there is so much that can go on once you begin getting older, it can get frustrating and confusing, all over again. Finally, I am scheduled to see an MS Expert (new one) next month (been in the “business” years). I have a Word file dedicated to notes that I’ll summarize before I see him, to up my chances of getting my concerns answered.. Hopefully he is more up on the SPMS stuff than I am, although I do read a lot here. Maybe he has a couple tricks up his sleeve and can help me sort things out! :-)
Will I continue on? Fall apart? How bad will it really get? How long can I live? The questions and uncertainties have returned like in the old days, somewhat. But not nearly the pressures; I know a lot how it went. Grumble, grumble :-(
It’s absolutely worth protecting what is still ‘working’ - protect with drugs, exercise, whatever marginal gains you can do to delay deterioration - our quality of life, our hope, our mental state needs this otherwise what’s the point really. We need bigger and longer studies and trials - unfortunately it seems to come down to budget and lack of prioritisation. An online discussion / roadshow would be great.
I was “advised” to stop my DMT when I showed neid. “You’re fine.” This case sounds quite typical here in the States. I will be 70 in Dec. My neuro, who believes in smouldering MS, was going to put me back on an older school DMD (not interferon beta!!) as you, Prof G, have suggested. However, since May, I’ve developed some kind of rapidly worsening anemia, so she has declined prescribing any DMD at all. She and the urologist are concerned. Does anyone else, including my PCP care? Not particularly! I’m definitely looking forward to your meetings and trials, even though I’m not a prospect for trials. It sounds wonderfully informative and necessary to the MS community everywhere. Thank you so much for this.
Hi Prof G, I'm taking Aubagio and it seems is causing me carpal tunnel on my left hand. In your esperienze aubagio can give pain, carpal tunnel, tingling, numbness on hands? Or it's only my 23 mm lesion on c2-c3?
Not aware of Aubagio causing a carpal tunnel syndrome. I can't give an opinion on anything that requires a neurological examination and review of investigations. You need to see your neurologist.
Should be useful a vaccine against EBV for PwMS or you think who has MS needs antivirals? I think EBV drives MS disease progression.
I read aubagio causes carpal tunnel and peripheral neuropathy, my neurologist propose me interferon or copaxone, i failed also tecfidera.
Have carpal tunnel and peroneal neuropathy which is a form of peripheral neuropathy, I guess. Both developed during betaseron. but I think it had to do (at least in part) with physical activity. I did Betaseron (23 years) and a brief stint on ocrevus until covid. Never did aubagio.
Would you not advise this person to head to one of the BTKi trials still recruiting if possible?
Thank you, please do let us know! I'm a patient of yours, signed up for MS Selfies, and I didn't know about it.
Online would be easier and safer. I had Lemtrada 2 weeks ago, so may be shielding for quite some time 🤕
Re: "I didn't know about it"
This was an invitation to speak at a regular local MS group meeting; we didn't arrange it. When we do I will let you know.
Thank you! 👍
I’ve had PPMS since 2003 am currently 69 years old with an EDSS of c6 .5. Upper body goodish. I’ve never been eligible for a DMD so therefor the notion of continuance of treatment is non-applicable. To preserve upper. Body function what does Professor G suggest in my another such cases?
You may be eligible for the CHARIOT-MS trial. There are about 15 centres across the UK participating in the trial.
Thanks very much
Or other trials recruiting patients with more advanced disease.
Dr G how can I email you about my medication dilemma?