To sort out the shortage of GPs, the government is allowing pharmacists to diagnose and treat sore throats. Will this help or exacerbate the management of IM?
I don’t unfortunately have any political sway or the means to fund such a project but we can fundraise aggressively and passionately for this. I believe it’s 200% necessary. Let’s do it.. how do we fundraiser for this, how much do you need.. where can we send donations to? We can’t wait for the government or pharmas so let’s do it ourselves?
I had IM in NZ aged 19 (right before my 20th birthday). I was sick at home for several days before calling my mum in despair. She picked me up and took me to the after hours surgery. The doctor took one look at me and knew what was up! I had broken out in a hot itchy rash as an immune reaction to the virus. I also had a UT infection due to the fever and I remember the doctor giving me a handful of 12 pills to take there and then - paracetamol, antihistamines, antibiotics and steroids. The official diagnosis came through not long after but I'm fairly certain I was prescribed a course of steroids and a course of antibiotics on the spot. I remember the doctor's certificate she gave me to excuse me from my French oral exam said I was "quite debilitated".
I have concerns about pharmacists managing IM. Here in Scotland community pharmacists prescribe for uncomplicated UTI. I visited the pharmacist with symptoms of UTI (before I had diagnosis of MS) this was under instruction from NHS24. He could not lay his hands on "the form" and asked me to come back later. A 1 hour round trip with UTI not great fun... doing it twice not on. As a retired Dr also with personal experience of UTI I suggested to him the symptoms and history he should record. He reluctantly did give me a prescription. He does not have any depth or breadth of knowledge. The system does not seem to allow for him to gain knowledge of outcome of his intervention either. I fear that similar will occur with sore throats and therefore IM
I had a bad case of glandular fever at 13 or 14 (my aunt had MS so I must have the genetic susceptibility) yet I was fine for the next 25 years before being diagnosed with RRMS at 39. What happened in those 25 years? A work colleague ((in the same room) got a bad case of glandular fever at 25 and was diagnosed a year later with RRMS (about a year after my diagnosis). Could I have been reinfected? Are there sub-types of ebv ie one sub-type gives you MS another disease? There are a few documented cluster cases - groups getting infected with ebv and a high number going on the develop MS. Why aren’t virologists taking this on? Aren’t you treading on their patch? Would you mind if a virologist started diagnosing Parkinson’s patients?
As said on a previous thread, I had IM aged 19 and PPMS in my 50's. Even if the connection isn't yet obvious, statistically it has to be there.
I'm not in the medical profession but I am a strategist in my own field. It strikes me that if the point of incidence of IM is in the Infectious Diseases realm, then they would need to lead the project (and funding) and potentially take much of the credit. Neurology / MS is presumably currently perceived as a resource - if that - in the IM field. If you're not bothered about who gets the credit, I would suggest you hook up with some ID consultants who have an interest in MS, and other autoimmune conditions beyond their own field.
When I picked up a couple of bouts of cellulitis last year, I was under an ID team and the consultant seemed to have a genuine interest in my MS, its effect on recovery / healing times etc. I can divulge a name offline if you wish?
I had sever episode of glandular fever at the age of 30.
Symptoms of MS started 4 years ago had episode of fatigue ongoing for 12 months which was ? Chronic fatigue during diagnosis I had bloods taken and I it was reported I had EBV at the time of bloods. Symptoms changed, last year diagnosed with Rapidly Evolving Sever MS
Excellent podcast - thank you! I agree with you 💯%
I had ongoing issues with tonsillitis in my teens, then came to NZ (29yrs) and got a mono-like illness (I was tested for EBV and was told I had antibodies (I however don’t recall having mono). I had swollen throat, glands up feeling really unwell. It got better but then I had ongoing cycles of swollen glands and feeling unwell every couple of weeks, I was prescribed lots of antibiotics for the sore throat. I was eventually diagnosed with post viral fatigue. Symptoms continued for 3 years then stopped. I was diagnosed with Relapsing MS 2021 at age 45.
I had a bad tonsillitis when I was 15 with my mouth and throat also full of ulcers. I wasn't tested neither for strep nor for EBV and was just given antibiotics. They didn't work so they gave me other antibiotics and the same after another week (i.e. 21 days of antibiotics, with all the related side effects). I hardly could eat and drink and wasn't better until another doctor told my parents to stop with antiobiotics because he was sure it was a virus. I stopped and finally got better. The same happened again (although not to bad!) at least once a year until I was 20. Never tested (and generally not visited!) and just prescribed antibiotics every time. I developed the first odd symptoms when I was 21, dismissed as "myopia worsening" "stress" or "hernia". I was diagnosed with MS at 41. I wonder if antibiotics could have weakened the capability of my body to fight the virus whic I suppose was probably EBV
I was very unwell with glandular fever at 24, including painful swollen liver. Was diagnosed with MS at 31 and wish I had access to antivirals during the glandular fever infection. I also had toxic hepatitis from my first DMT and wondered whether my liver was susceptible from the glandular fever.
I suppose there are mild cases, but I was sick with IM around age 10, and I recall the physician (our GP) raving on and on about my spleen, which was gibberish to me. It’s quite a concern that a “sore throat” could be misdiagnosed through video calls or pharmacies, because I had an excruciatingly sore, enlarged lymph nodes, total exhaustion and probably more. At age 13 or 14, the symptoms were back, and I missed quite a bit of school again and at that age, I was just plain angry. It was so very tiring and I missed many activities. So I believe it’s a mistake to write IM off as “benign”. It’s also, as you point out, important to differentiate IM from strep. I had one child who had constant strep infections, but none of my children had IM, though one has Crohn’s. I agree with Natasha. Crowdfund!! A good idea, though I do wish I were politically connected. Stick to your guns, Prof G! Yes, let’s do it! 🌷
The reality is, I had no access to healthcare on the NHS so none of this would have made any difference to me. It won't reach people in my socioeconomic position anyway. That's the biggest problem.
For what It's worth, I was ill constantly as a child with throat/ear/kidney infections and given countless antibiotics. I don't think I was given any tests. Story of my life. My MS started around that time. I have no idea if there's a connection 🤷♂️
I was full of piss n vinegar, until my bout with IM at 17YO. My recovery left energy level forever governed. A new sobering appreciation for fatigue. First MS onset was 6 years later. I very much encourage this research. In Alberta Canada, I find pharmacists eager and able to support diagnostics. They are generally approachable and often can be seen in far more timely manner than GPs. We need to integrate all functional tools in the toolbox.
yep, I was 19 and don't think I've felt fully "well" since. It had a particular effect on my cognitive ability. I made it through three degrees but have always found it hard to focus since then, things take longer and are harder. I mean, I know education gets harder as we progress through the system but I just found it easier to study before getting sick.
Oddly enough, although I realize there will always be outliers in anything, both of my sisters had bad bouts of mono and yet do not have multiple sclerosis. I never ever had Mono and yet have primary progressive MS. Strange.
IM and MS is always an interesting topic for me. When I was seven I had viral meningitis and was hospitalized for it for 8 days - I was living in London at the time. In my late 20s, and now in the USA, I had infectious mononucleosis, which wiped me out for a month and hospitalized me for 5 days. Within 10 years of that I experienced Lhermitte's sign and at age 40 I was diagnosed with RRMS.
My older brother also had IM as a teenager, but I don't recall it being as severe or requiring hospitalization. He doesn't have MS, but he does have type-2 diabetes, a condition my mother's father also had.
I don’t unfortunately have any political sway or the means to fund such a project but we can fundraise aggressively and passionately for this. I believe it’s 200% necessary. Let’s do it.. how do we fundraiser for this, how much do you need.. where can we send donations to? We can’t wait for the government or pharmas so let’s do it ourselves?
Hi Natasha, I think that’s an excellent idea. I always hear about “crowdfunding”. Well, why not us? Cheers! 🌷
I had IM in NZ aged 19 (right before my 20th birthday). I was sick at home for several days before calling my mum in despair. She picked me up and took me to the after hours surgery. The doctor took one look at me and knew what was up! I had broken out in a hot itchy rash as an immune reaction to the virus. I also had a UT infection due to the fever and I remember the doctor giving me a handful of 12 pills to take there and then - paracetamol, antihistamines, antibiotics and steroids. The official diagnosis came through not long after but I'm fairly certain I was prescribed a course of steroids and a course of antibiotics on the spot. I remember the doctor's certificate she gave me to excuse me from my French oral exam said I was "quite debilitated".
I have concerns about pharmacists managing IM. Here in Scotland community pharmacists prescribe for uncomplicated UTI. I visited the pharmacist with symptoms of UTI (before I had diagnosis of MS) this was under instruction from NHS24. He could not lay his hands on "the form" and asked me to come back later. A 1 hour round trip with UTI not great fun... doing it twice not on. As a retired Dr also with personal experience of UTI I suggested to him the symptoms and history he should record. He reluctantly did give me a prescription. He does not have any depth or breadth of knowledge. The system does not seem to allow for him to gain knowledge of outcome of his intervention either. I fear that similar will occur with sore throats and therefore IM
I had a bad case of glandular fever at 13 or 14 (my aunt had MS so I must have the genetic susceptibility) yet I was fine for the next 25 years before being diagnosed with RRMS at 39. What happened in those 25 years? A work colleague ((in the same room) got a bad case of glandular fever at 25 and was diagnosed a year later with RRMS (about a year after my diagnosis). Could I have been reinfected? Are there sub-types of ebv ie one sub-type gives you MS another disease? There are a few documented cluster cases - groups getting infected with ebv and a high number going on the develop MS. Why aren’t virologists taking this on? Aren’t you treading on their patch? Would you mind if a virologist started diagnosing Parkinson’s patients?
Yes and no. I have two virologists, an ID consultant, an EBV expert and GP on the project. It's a big family.
Hello Gavin
As said on a previous thread, I had IM aged 19 and PPMS in my 50's. Even if the connection isn't yet obvious, statistically it has to be there.
I'm not in the medical profession but I am a strategist in my own field. It strikes me that if the point of incidence of IM is in the Infectious Diseases realm, then they would need to lead the project (and funding) and potentially take much of the credit. Neurology / MS is presumably currently perceived as a resource - if that - in the IM field. If you're not bothered about who gets the credit, I would suggest you hook up with some ID consultants who have an interest in MS, and other autoimmune conditions beyond their own field.
When I picked up a couple of bouts of cellulitis last year, I was under an ID team and the consultant seemed to have a genuine interest in my MS, its effect on recovery / healing times etc. I can divulge a name offline if you wish?
Thanks. I have three ID consultants involved, a GP and I am about to include a pharmacist. Fingers crossed.
I had sever episode of glandular fever at the age of 30.
Symptoms of MS started 4 years ago had episode of fatigue ongoing for 12 months which was ? Chronic fatigue during diagnosis I had bloods taken and I it was reported I had EBV at the time of bloods. Symptoms changed, last year diagnosed with Rapidly Evolving Sever MS
I agree with what you are saying
Excellent podcast - thank you! I agree with you 💯%
I had ongoing issues with tonsillitis in my teens, then came to NZ (29yrs) and got a mono-like illness (I was tested for EBV and was told I had antibodies (I however don’t recall having mono). I had swollen throat, glands up feeling really unwell. It got better but then I had ongoing cycles of swollen glands and feeling unwell every couple of weeks, I was prescribed lots of antibiotics for the sore throat. I was eventually diagnosed with post viral fatigue. Symptoms continued for 3 years then stopped. I was diagnosed with Relapsing MS 2021 at age 45.
I had a bad tonsillitis when I was 15 with my mouth and throat also full of ulcers. I wasn't tested neither for strep nor for EBV and was just given antibiotics. They didn't work so they gave me other antibiotics and the same after another week (i.e. 21 days of antibiotics, with all the related side effects). I hardly could eat and drink and wasn't better until another doctor told my parents to stop with antiobiotics because he was sure it was a virus. I stopped and finally got better. The same happened again (although not to bad!) at least once a year until I was 20. Never tested (and generally not visited!) and just prescribed antibiotics every time. I developed the first odd symptoms when I was 21, dismissed as "myopia worsening" "stress" or "hernia". I was diagnosed with MS at 41. I wonder if antibiotics could have weakened the capability of my body to fight the virus whic I suppose was probably EBV
I was very unwell with glandular fever at 24, including painful swollen liver. Was diagnosed with MS at 31 and wish I had access to antivirals during the glandular fever infection. I also had toxic hepatitis from my first DMT and wondered whether my liver was susceptible from the glandular fever.
I suppose there are mild cases, but I was sick with IM around age 10, and I recall the physician (our GP) raving on and on about my spleen, which was gibberish to me. It’s quite a concern that a “sore throat” could be misdiagnosed through video calls or pharmacies, because I had an excruciatingly sore, enlarged lymph nodes, total exhaustion and probably more. At age 13 or 14, the symptoms were back, and I missed quite a bit of school again and at that age, I was just plain angry. It was so very tiring and I missed many activities. So I believe it’s a mistake to write IM off as “benign”. It’s also, as you point out, important to differentiate IM from strep. I had one child who had constant strep infections, but none of my children had IM, though one has Crohn’s. I agree with Natasha. Crowdfund!! A good idea, though I do wish I were politically connected. Stick to your guns, Prof G! Yes, let’s do it! 🌷
The reality is, I had no access to healthcare on the NHS so none of this would have made any difference to me. It won't reach people in my socioeconomic position anyway. That's the biggest problem.
For what It's worth, I was ill constantly as a child with throat/ear/kidney infections and given countless antibiotics. I don't think I was given any tests. Story of my life. My MS started around that time. I have no idea if there's a connection 🤷♂️
I was full of piss n vinegar, until my bout with IM at 17YO. My recovery left energy level forever governed. A new sobering appreciation for fatigue. First MS onset was 6 years later. I very much encourage this research. In Alberta Canada, I find pharmacists eager and able to support diagnostics. They are generally approachable and often can be seen in far more timely manner than GPs. We need to integrate all functional tools in the toolbox.
yep, I was 19 and don't think I've felt fully "well" since. It had a particular effect on my cognitive ability. I made it through three degrees but have always found it hard to focus since then, things take longer and are harder. I mean, I know education gets harder as we progress through the system but I just found it easier to study before getting sick.
Oddly enough, although I realize there will always be outliers in anything, both of my sisters had bad bouts of mono and yet do not have multiple sclerosis. I never ever had Mono and yet have primary progressive MS. Strange.
IM and MS is always an interesting topic for me. When I was seven I had viral meningitis and was hospitalized for it for 8 days - I was living in London at the time. In my late 20s, and now in the USA, I had infectious mononucleosis, which wiped me out for a month and hospitalized me for 5 days. Within 10 years of that I experienced Lhermitte's sign and at age 40 I was diagnosed with RRMS.
My older brother also had IM as a teenager, but I don't recall it being as severe or requiring hospitalization. He doesn't have MS, but he does have type-2 diabetes, a condition my mother's father also had.