The neurologist who gave me my diagnosis in 2009 (by text) has since been struck-off so it is no surprise mine was 'fucked-up' for want of better words! He told me I had lesions on my brain and spinal cord but that it was 'crap' MS so he should never need to see me again. I wasn't offered any treatment or follow-up. He walked me to the door of the waiting room full of people in wheelchairs and told me to come back if I ended up like that. It never seemed right but put it down to him being an overly intelligent eccentric. I'll never forget seeing his face on the news and instantly knowing something was very wrong. By the time I got to see a neurologist I had what is described as a very heavy lesion load and SPMS. I don't meet the criteria for any DMT as I haven't had any new lesions since I started having MRIs again (they won't count the new ones between 2009 and 2018) so am now left to rot.
If that is worthy of legal action, many of us will be wealthy.
I honestly think that just because “now” we recognize this, neurologists were going on old information. In my case, neuro never saw an active lesion (MRIs 8 weeks or more later), and told me one more non-active lesion doesn’t count. So I added one by one over three years with increasing disability.
Was he negligent? Yep: there are thousands more out there.
However the cost to our health care systems for legal action - this would be a massive can of worms.
This is why I am sit on the fence. Without all the information it is very difficult to be able to make a call on whether the delays in this woman's MS diagnosis was negligent. All I can say the delay from optic neuritis in 2012 to SPMS in 2022 has had consequences for her. It is now up to the legal profession to argue whether or not there is medical negligence involved. I also don't do medicolegal work so I won't have to comment on this case.
I was diagnosed last year at age 45. From symptom onset to diagnosis (MRI results) was 5 days for me! Confirmed a month later by a neurologist. Started off on Tecfidera but then did more research and opted for Natalizumab and so far so good 😊
I had MS since I was a child, have been severely disabled for decades with every MS symptom, but the NHS didn't believe me and didn't care. Dozens of 'medical professionals'. They insisted I was mentally ill and imagining my symptoms. Even after I went almost blind in both eyes from Optic Neuritis. They misdiagnosed me with Chronic Fatigue Syndrome without ever letting me have an MRI scan or see a neurologist. The medical negligence, brainwashing, and discrimination was staggering.
I eventually diagnosed myself correctly via Google and saw a neurologist privately. By that point I had 'significant cerebral atrophy', a wheelchair, and complex PTSD.
The NHS utterly destroyed me. One then has only a year to make complaints (to the same people who abused one), and 3 years to sue. I was too ill and traumatized. I'm just out of time. I'm finding it all very, very hard to live with.
I was referred to a neurologist by my family doctor in 2010. I had tingling in my arms and legs. The neurologist administered an EMG, which came back as normal. She then ordered an MRI for my lower spine only, which now seems ridiculous. She did not come to a diagnosis, but her guesses were that I had some minor arthritis in my lower spine along with possible endometriosis symptoms. I had been diagnosed and treated for endometriosis in 1985. I had not educated myself enough about MS and trusted her assessment. Looking back, I wish I had asked more questions and pushed for a follow-up with a different neurologist or even a brain MRI or puncture. Five years later I did have a defining symptom, which led to an ER visit. I had lost the use of my left hand/arm and was tested for a stroke. Since I did not have a stroke, I was referred to a different neurologist, but had to wait six months for a visit. He ordered several MRIs over another six months and did not believe that the white spots on my brain were MS, but due to “aging” (I was 50 at the time). He questioned the shadow on my spine picked up by the MRI. He prescribed Gilenya, “just in case”. I wound up moving to a new state a few months later, after my husband’s death. A third neurologist made a definitive diagnosis of MS. My current and fourth neurologist agrees with the MS diagnosis and has since prescribed Mavenclad, which has made a positive change in my symptoms. I understand that MS can be difficult to diagnose, but there has to be a better course of action.
Heather, I just noted that you also had the white areas on brain MRI diagnosed as “normal aging”. Also, you and several others have mentioned endometriosis. I was treated for it as well, also in 1985, with this hormone (danocrine), which I found intolerable. I discontinued it because I was taking a huge final exam. I think Prof G has discussed the effects of hormones. I’m glad your symptoms are improving now!💕
Those similarities jumped out at me, too. I turned down steroids for endometriosis and had two laparoscopies 1988 and 1989. That was a relatively new procedure. Had been prescribed birth control pills before and after, so there is the hormonal component. White lesions attributed to aging still baffles me when other symptoms were most definitely present. I’m glad Italian and Heather have shared. I would have thought it was just me🙂
Hi Sheilah. Thanks for your 'like'. I am another who, eventually was diagnosed with endometriosis at the age of 35, by which time it was too late. I had scarring in my pelvis involving ligaments as well as uterus,ovaries and tubes, so had a total hysterectomy and oophrectomies. The histology showed adenomyosis (endometriosis in the uterus). No-one had thought I had endometriosis because I just carried on. I did take oral contraception to see if it would help with symptoms. This took place over the years when I worked in gynaecology and then as a senior midwife! Later, I was also delayed treatment with back pain, until I had a complete disc prolapse that would have left my left leg paralysed had I not had urgent surgery. What is it about us that doctors do not take seriously? I wonder if one does not literally crawl into their office, and scream and shout when being examined, that they take no notice? I along with you guys I'm sure, was taught to be stoic and not make a fuss. Maybe that goes against us? I have read that some have classed endometriosis as an auto-immune disease, therefore MS could be more of a possibility. I believe Professor Giovannoni should be cloned. He is certainly one of a very few who obviously listens and more importantly, observes his patients. Eve
Holy Cow! I am beginning to understand how women in particular are ignored by the medical community. It is very telling when a lot of conditions that affect women have insufficient testing outcomes. I did not know endometriosis may be autoimmune. I will read what I can about that possibility.
Yes, I was taught to push through and I think I confused that with being strong.
I’m sorry you have had a hard time of things and a lot of pain in the process.
Maybe endometriosis is a marker that will be taken seriously in the future. Be gentle with yourself. I’m learning (slowly) that my disease is not my fault. Our symptoms should have been taken seriously. I think if we did scream and shout that we would told we were overreacting.
I vote in favor of cloning Dr G!
I wish we all lived near each other so we could go for coffee and talk. MS Selfie provides a much-needed resource.
Sheilah. I have a few research papers that I found just by putting ME and endometriosis into the search engine. Once you have one, it leads to many others.
The co-occurrence of endometriosis with multiple sclerosis, systemic lupus erythematosus and Sjogrens syndrome.
No, not just us. I’ve seen a few women mention it. So as not to completely lose a sense of humor, I call my situation pulling the joker in the medical card deck. At least it’s felt like it. Perhaps that’s to balance fear! 💕
I presented a number of times to my GP with what I now know was relapses, there was def many missed opportunities for further investigations/ timely diagnosis.
By the time MS was diagnosed I had heavy lesion load on brain and spine and poor prognosis. Further investigation/ diagnosis was only brought about by my own insistence and willingness to pay for mri/s myself.
It’s very frustrating to think of the early treatment opportunities that were missed. I do hope things are better in this regard for people presenting to Dr’s now, but I’m not sure covid and telemedicine does much to help
I think there can be tunnel vision when looking at MRI results! When I had tingling in my hands and feet my GP, thinking it might be spinal compression, sent me to A&E and they sent me for an MRI. The MRI report my GP received stated it was normal. Fortunately he also referred me to a neurologist who, when looking a my MRI stated "I can't believe anyone could look at that and say it was normal when you have 4 bloody great lesions on your spine!" I was subsequently diagnosed with PPMS which came as a relief as I had suffered from life limiting fatigue for many years.
I wonder when a legal threshold will be established regarding the available clinical proof that the sooner a patient is started on a high-efficacy therapy then the better their long-term prognosis is?
Ergo, were a patient to be diagnosed and the appropriate medications not suggested as a starting point, once this threshold of proof has been established, and the patient deteriorated faster than expected had they experienced a more efficacious intervention sooner could they also claim negligence?
I do feel a good lawyer could squirm out of that one. There is failure to diagnose on the one hand but also a failure to treat effectively on the other leading to a faster accumulation of a greater level of disability.
Were I the lawyer for the insurers I'd try to inject enough doubt about the patient hesitancy to clear my client, the doctor. However, were I the lawyer for the patient I'd argue that the long-term consequences of going 'gently' had not been fully explained to my client. In addition, the likely long-term outcomes of the disease when treated with varying efficacies of medication had not been properly explained to them.
Were I the treating neurologist I'd want the patient to sign off on the fact that they had had all the details laid before them so that they could make a fully informed decision having had sufficient information to contextualise all the risks.
I am in a Facebook group for parents who have children with MS. There are MANY parents on there who are choosing on behalf of their child to decline DMDs and ‘go natural’ with vitamins and dietary adjustments. I feel so strongly that their children need more empowered advocates to change this for them. The evidence for any DMDs let alone high efficacy ones is so compelling I don’t see how parents are allowed to decline it without it being questioned in law.
I was diagnosed with MS at a top hospital with no spinal tap, then diagnosed with NMO at a different top hospital with new MRI and tap b/c MRI said ‘decavitation’ but no spots. That ms neurologist switched back to MS after the NMO blood test became available... and the dreaded spots on the MRIs finally appeared.
In approx 2008, aged around 24, I had an MRI after years of tinnitus. At the time I worked at the hospital in question and a colleague (perhaps a bit naughtily) let me view the images. I took pictures of said scan on my phone and marvelled at slices of my brain… then got the all clear and that was that. A bit of novelty; nothing more, nothing less.
Cut to 2020 and I find myself in A&E with loss of function on the right side of my body; within 24 hours I am diagnosed with MS. Later, I find out at that point I had approx 25 brain lesions - and obviously I find myself wondering when it could have started. I then read that tinnitus is a possible MS symptom, and I think back to that earlier scan… I unearth the pictures on my laptop and I find myself questioning whether I can see two or three lesions on it. But then I’m not a medical person (and I’m certainly not a person who can interpret brain scans), and also I’m not sure of the wisdom of opening that particular Pandora’s Box….
But I still find I can’t quite put it to bed. What do I do? Request my medical records and try to get a definitive answer, or just try to accept there might well have been a fuck up at “St Elsewhere” and that I can’t change the past?
Reading this case really struck a cord with me. Living in the U.K., I had sudden temporary hearing loss in 2009, subsequent MRI showed lesions and the lumbar puncture showed the presence of IgG bands. I was then diagnosed with CIS as I “only” really had one relapse. Sent home and told to live my live and not to worry….no treatment or follow up.
12 years later,I started to notice difficulties with balance, weakness in both legs alongside other symptoms that everyone told me were stress related. I insisted on further investigations and MRIs now show lesions in spinal cord and many in my brain. After 12 years I was finally diagnosed with RRMS and am now on Rituximab. Diagnosis was made here in Croatia…my neurologist said to me looking at my MRI from back then, it was MS 12 years ago and absolutely shocked that no one ever followed up.
My BIG learning, self educate, be persistent and get second opinions if possible.
When the children reach legal age and - sadly - realise that their parents have effectively caused them harm then I could foresee a few messy lawsuits.
Can you pls explain the OCBs and dissemination in time please? Do OCBs always stay positive after a previous relapse and if tested at presentation how can one be sure they aren’t linked to that presentation itself? Are OCBs only present if MS has been active prior to the presenting relapse?
Im really truely convinced my diagnosis is incorrect. I would really like you to review it and have tried to reach you on here, email and twitter. I have all information pertaining to my diagnosis and specific case. There are so many symptoms that are nowhere to be found in ms literature and things that work treatmentwise that are not placebo but no one is listening to me and i am starting to feel like im crazy for questioning it. I would happily pay whatever i need to just to get 5 minutes of your time to overlook it and wouldnt expect specific advice.
Dan you can ask your GP to refer you anywhere for an opinion if they agree it’s an appropriate use of NHS resources. You don’t have to see your local team.
Dr. Brandon Beaber is currently tweeting interesting misdiagnoses (Twitter). You are right to question. One recent one I found fascinating was capillary telangiectasia mimicking an active demyelinating lesion.
My ordeal started in 1999 with tingling and muscle twitches. That prompted my first visit with a neurologist and testing. That ended with an offer of Valium and told to “chill out”.
Then a severe headache and face pain that prompted a new visit with a second neurologist. More tests and a brain MRI . That ended with a prescription Ambien.
Then bouts of numbness and my leg giving out. Falling. This was a third visit with a third neurologist. More tests, MRI.
Told that I had some white spots on my MRI and come back in six months!
Well, my problem with walking and falling persisted so I sought out a new neurologist. I showed him the brain MRI from the last visit and he diagnosed me right then and there with possible MS. He confirmed this with a spinal tap and an MRI of the spine and thoracic area. All in all that took 10 years!
The neurologist who gave me my diagnosis in 2009 (by text) has since been struck-off so it is no surprise mine was 'fucked-up' for want of better words! He told me I had lesions on my brain and spinal cord but that it was 'crap' MS so he should never need to see me again. I wasn't offered any treatment or follow-up. He walked me to the door of the waiting room full of people in wheelchairs and told me to come back if I ended up like that. It never seemed right but put it down to him being an overly intelligent eccentric. I'll never forget seeing his face on the news and instantly knowing something was very wrong. By the time I got to see a neurologist I had what is described as a very heavy lesion load and SPMS. I don't meet the criteria for any DMT as I haven't had any new lesions since I started having MRIs again (they won't count the new ones between 2009 and 2018) so am now left to rot.
Northern Ireland perchance?
I’m so sorry that’s truly awful.
If that is worthy of legal action, many of us will be wealthy.
I honestly think that just because “now” we recognize this, neurologists were going on old information. In my case, neuro never saw an active lesion (MRIs 8 weeks or more later), and told me one more non-active lesion doesn’t count. So I added one by one over three years with increasing disability.
Was he negligent? Yep: there are thousands more out there.
However the cost to our health care systems for legal action - this would be a massive can of worms.
This is why I am sit on the fence. Without all the information it is very difficult to be able to make a call on whether the delays in this woman's MS diagnosis was negligent. All I can say the delay from optic neuritis in 2012 to SPMS in 2022 has had consequences for her. It is now up to the legal profession to argue whether or not there is medical negligence involved. I also don't do medicolegal work so I won't have to comment on this case.
I was diagnosed last year at age 45. From symptom onset to diagnosis (MRI results) was 5 days for me! Confirmed a month later by a neurologist. Started off on Tecfidera but then did more research and opted for Natalizumab and so far so good 😊
My diagnosis was delayed for 30 years.
I had MS since I was a child, have been severely disabled for decades with every MS symptom, but the NHS didn't believe me and didn't care. Dozens of 'medical professionals'. They insisted I was mentally ill and imagining my symptoms. Even after I went almost blind in both eyes from Optic Neuritis. They misdiagnosed me with Chronic Fatigue Syndrome without ever letting me have an MRI scan or see a neurologist. The medical negligence, brainwashing, and discrimination was staggering.
I eventually diagnosed myself correctly via Google and saw a neurologist privately. By that point I had 'significant cerebral atrophy', a wheelchair, and complex PTSD.
The NHS utterly destroyed me. One then has only a year to make complaints (to the same people who abused one), and 3 years to sue. I was too ill and traumatized. I'm just out of time. I'm finding it all very, very hard to live with.
I am so sorry💞
I am so sorry. Thirty years is a lot of one’s life. And I understand being out of time. I am glad you’re here.💕
I was referred to a neurologist by my family doctor in 2010. I had tingling in my arms and legs. The neurologist administered an EMG, which came back as normal. She then ordered an MRI for my lower spine only, which now seems ridiculous. She did not come to a diagnosis, but her guesses were that I had some minor arthritis in my lower spine along with possible endometriosis symptoms. I had been diagnosed and treated for endometriosis in 1985. I had not educated myself enough about MS and trusted her assessment. Looking back, I wish I had asked more questions and pushed for a follow-up with a different neurologist or even a brain MRI or puncture. Five years later I did have a defining symptom, which led to an ER visit. I had lost the use of my left hand/arm and was tested for a stroke. Since I did not have a stroke, I was referred to a different neurologist, but had to wait six months for a visit. He ordered several MRIs over another six months and did not believe that the white spots on my brain were MS, but due to “aging” (I was 50 at the time). He questioned the shadow on my spine picked up by the MRI. He prescribed Gilenya, “just in case”. I wound up moving to a new state a few months later, after my husband’s death. A third neurologist made a definitive diagnosis of MS. My current and fourth neurologist agrees with the MS diagnosis and has since prescribed Mavenclad, which has made a positive change in my symptoms. I understand that MS can be difficult to diagnose, but there has to be a better course of action.
Heather, I just noted that you also had the white areas on brain MRI diagnosed as “normal aging”. Also, you and several others have mentioned endometriosis. I was treated for it as well, also in 1985, with this hormone (danocrine), which I found intolerable. I discontinued it because I was taking a huge final exam. I think Prof G has discussed the effects of hormones. I’m glad your symptoms are improving now!💕
Those similarities jumped out at me, too. I turned down steroids for endometriosis and had two laparoscopies 1988 and 1989. That was a relatively new procedure. Had been prescribed birth control pills before and after, so there is the hormonal component. White lesions attributed to aging still baffles me when other symptoms were most definitely present. I’m glad Italian and Heather have shared. I would have thought it was just me🙂
Hi Sheilah. Thanks for your 'like'. I am another who, eventually was diagnosed with endometriosis at the age of 35, by which time it was too late. I had scarring in my pelvis involving ligaments as well as uterus,ovaries and tubes, so had a total hysterectomy and oophrectomies. The histology showed adenomyosis (endometriosis in the uterus). No-one had thought I had endometriosis because I just carried on. I did take oral contraception to see if it would help with symptoms. This took place over the years when I worked in gynaecology and then as a senior midwife! Later, I was also delayed treatment with back pain, until I had a complete disc prolapse that would have left my left leg paralysed had I not had urgent surgery. What is it about us that doctors do not take seriously? I wonder if one does not literally crawl into their office, and scream and shout when being examined, that they take no notice? I along with you guys I'm sure, was taught to be stoic and not make a fuss. Maybe that goes against us? I have read that some have classed endometriosis as an auto-immune disease, therefore MS could be more of a possibility. I believe Professor Giovannoni should be cloned. He is certainly one of a very few who obviously listens and more importantly, observes his patients. Eve
Hi Eve
Holy Cow! I am beginning to understand how women in particular are ignored by the medical community. It is very telling when a lot of conditions that affect women have insufficient testing outcomes. I did not know endometriosis may be autoimmune. I will read what I can about that possibility.
Yes, I was taught to push through and I think I confused that with being strong.
I’m sorry you have had a hard time of things and a lot of pain in the process.
Maybe endometriosis is a marker that will be taken seriously in the future. Be gentle with yourself. I’m learning (slowly) that my disease is not my fault. Our symptoms should have been taken seriously. I think if we did scream and shout that we would told we were overreacting.
I vote in favor of cloning Dr G!
I wish we all lived near each other so we could go for coffee and talk. MS Selfie provides a much-needed resource.
Take care🧡
This article echoes what Eve mentioned about endometriosis:
https://www.healthline.com/health/womens-health/is-endometriosis-an-autoimmune-disease
Sheilah. I have a few research papers that I found just by putting ME and endometriosis into the search engine. Once you have one, it leads to many others.
The co-occurrence of endometriosis with multiple sclerosis, systemic lupus erythematosus and Sjogrens syndrome.
https://academic.oup.com/humrep/article/26/6/1555/2915146?login=
I hope it works for you...
Yes, it would be nice to meet up, but at least Prof. Giovanni has given us this opportunity, for which I hope pleases him. Eve
No, not just us. I’ve seen a few women mention it. So as not to completely lose a sense of humor, I call my situation pulling the joker in the medical card deck. At least it’s felt like it. Perhaps that’s to balance fear! 💕
I presented a number of times to my GP with what I now know was relapses, there was def many missed opportunities for further investigations/ timely diagnosis.
By the time MS was diagnosed I had heavy lesion load on brain and spine and poor prognosis. Further investigation/ diagnosis was only brought about by my own insistence and willingness to pay for mri/s myself.
It’s very frustrating to think of the early treatment opportunities that were missed. I do hope things are better in this regard for people presenting to Dr’s now, but I’m not sure covid and telemedicine does much to help
I think there can be tunnel vision when looking at MRI results! When I had tingling in my hands and feet my GP, thinking it might be spinal compression, sent me to A&E and they sent me for an MRI. The MRI report my GP received stated it was normal. Fortunately he also referred me to a neurologist who, when looking a my MRI stated "I can't believe anyone could look at that and say it was normal when you have 4 bloody great lesions on your spine!" I was subsequently diagnosed with PPMS which came as a relief as I had suffered from life limiting fatigue for many years.
Regarding legal actions:
I wonder when a legal threshold will be established regarding the available clinical proof that the sooner a patient is started on a high-efficacy therapy then the better their long-term prognosis is?
Ergo, were a patient to be diagnosed and the appropriate medications not suggested as a starting point, once this threshold of proof has been established, and the patient deteriorated faster than expected had they experienced a more efficacious intervention sooner could they also claim negligence?
I do feel a good lawyer could squirm out of that one. There is failure to diagnose on the one hand but also a failure to treat effectively on the other leading to a faster accumulation of a greater level of disability.
Were I the lawyer for the insurers I'd try to inject enough doubt about the patient hesitancy to clear my client, the doctor. However, were I the lawyer for the patient I'd argue that the long-term consequences of going 'gently' had not been fully explained to my client. In addition, the likely long-term outcomes of the disease when treated with varying efficacies of medication had not been properly explained to them.
Were I the treating neurologist I'd want the patient to sign off on the fact that they had had all the details laid before them so that they could make a fully informed decision having had sufficient information to contextualise all the risks.
I am in a Facebook group for parents who have children with MS. There are MANY parents on there who are choosing on behalf of their child to decline DMDs and ‘go natural’ with vitamins and dietary adjustments. I feel so strongly that their children need more empowered advocates to change this for them. The evidence for any DMDs let alone high efficacy ones is so compelling I don’t see how parents are allowed to decline it without it being questioned in law.
I was diagnosed with MS at a top hospital with no spinal tap, then diagnosed with NMO at a different top hospital with new MRI and tap b/c MRI said ‘decavitation’ but no spots. That ms neurologist switched back to MS after the NMO blood test became available... and the dreaded spots on the MRIs finally appeared.
In approx 2008, aged around 24, I had an MRI after years of tinnitus. At the time I worked at the hospital in question and a colleague (perhaps a bit naughtily) let me view the images. I took pictures of said scan on my phone and marvelled at slices of my brain… then got the all clear and that was that. A bit of novelty; nothing more, nothing less.
Cut to 2020 and I find myself in A&E with loss of function on the right side of my body; within 24 hours I am diagnosed with MS. Later, I find out at that point I had approx 25 brain lesions - and obviously I find myself wondering when it could have started. I then read that tinnitus is a possible MS symptom, and I think back to that earlier scan… I unearth the pictures on my laptop and I find myself questioning whether I can see two or three lesions on it. But then I’m not a medical person (and I’m certainly not a person who can interpret brain scans), and also I’m not sure of the wisdom of opening that particular Pandora’s Box….
But I still find I can’t quite put it to bed. What do I do? Request my medical records and try to get a definitive answer, or just try to accept there might well have been a fuck up at “St Elsewhere” and that I can’t change the past?
Reading this case really struck a cord with me. Living in the U.K., I had sudden temporary hearing loss in 2009, subsequent MRI showed lesions and the lumbar puncture showed the presence of IgG bands. I was then diagnosed with CIS as I “only” really had one relapse. Sent home and told to live my live and not to worry….no treatment or follow up.
12 years later,I started to notice difficulties with balance, weakness in both legs alongside other symptoms that everyone told me were stress related. I insisted on further investigations and MRIs now show lesions in spinal cord and many in my brain. After 12 years I was finally diagnosed with RRMS and am now on Rituximab. Diagnosis was made here in Croatia…my neurologist said to me looking at my MRI from back then, it was MS 12 years ago and absolutely shocked that no one ever followed up.
My BIG learning, self educate, be persistent and get second opinions if possible.
Good to hear how you're progressing with the new website, looking forward to seeing it - thanks for the update
When the children reach legal age and - sadly - realise that their parents have effectively caused them harm then I could foresee a few messy lawsuits.
Can you pls explain the OCBs and dissemination in time please? Do OCBs always stay positive after a previous relapse and if tested at presentation how can one be sure they aren’t linked to that presentation itself? Are OCBs only present if MS has been active prior to the presenting relapse?
Im really truely convinced my diagnosis is incorrect. I would really like you to review it and have tried to reach you on here, email and twitter. I have all information pertaining to my diagnosis and specific case. There are so many symptoms that are nowhere to be found in ms literature and things that work treatmentwise that are not placebo but no one is listening to me and i am starting to feel like im crazy for questioning it. I would happily pay whatever i need to just to get 5 minutes of your time to overlook it and wouldnt expect specific advice.
I work in the NHS and don't see private patients, which explains why I can't see you.
Would there be a way to be reffered to you for a one off review and advice ? I recently had hsct at barts so would be in the their system.
Dan you can ask your GP to refer you anywhere for an opinion if they agree it’s an appropriate use of NHS resources. You don’t have to see your local team.
Dr. Brandon Beaber is currently tweeting interesting misdiagnoses (Twitter). You are right to question. One recent one I found fascinating was capillary telangiectasia mimicking an active demyelinating lesion.
Another interesting mimic is CLIPPERS.
You’re right to question!
My ordeal started in 1999 with tingling and muscle twitches. That prompted my first visit with a neurologist and testing. That ended with an offer of Valium and told to “chill out”.
Then a severe headache and face pain that prompted a new visit with a second neurologist. More tests and a brain MRI . That ended with a prescription Ambien.
Then bouts of numbness and my leg giving out. Falling. This was a third visit with a third neurologist. More tests, MRI.
Told that I had some white spots on my MRI and come back in six months!
Well, my problem with walking and falling persisted so I sought out a new neurologist. I showed him the brain MRI from the last visit and he diagnosed me right then and there with possible MS. He confirmed this with a spinal tap and an MRI of the spine and thoracic area. All in all that took 10 years!