People with MS are often traumatised by how their MS was diagnosed. It doesn't have to be this way and there are things you can do to relieve the symptoms.
I received my ms diagnosis in the post, the week before Christmas, 2019. I have yet to come face to face with a neurologist. When I get a letter in the post now that isn't clearly marked on the outside, or indeed is marked as from the hospital, I get the most horrible feeling in the pit of my stomach and my hands start to tremble.
I found the leadup to my diagnosis quite traumatic. I was seen at three different hospitals. At the first, a consultant I saw was quite jolly and put me at ease. The next time I went, post-MRI I saw a registrar who did his best to frighten the life out of me. He listed a host of symptoms (which I now know would indicate Uthoff's) and didn't believe me when I said I had none of them. He said "this is very serious" and showed me my lesion-riddled brain. I didn't want to cry in front of this horrible man so I saved it until I got home. A friend was staying with me and thank goodness she was. She calmed me down and told me of an aunt who has MS and is fine.
It was a few more years and a few more relapses before I was diagnosed with "probable MS" at a different hospital but because "we don't do MS here" (it was the only hospital in London my GP could refer me to) he booked me another MRI and a referral to Queen Square. I liked him and by that point of course there were no surprises left, I was just desperate to be diagnosed.
I was treated very well at Queen Square too. Very textbook, with a registrar taking a full case history without mentioning MS before wheeling the consultant in to deliver the news.
But it was on the other side of Queen Square that I had that first MRI. I remember needing to go to Queen Square for work once in that limbo time and completely breaking down.
I work with people. I'm used to dealing with them. To someone like me it feels like my job is easy, and customer care shouldn't be hard. But watching colleagues deal with customers I can see it's not a talent everyone possesses. And it's the same with bedside manner. I wish I had never met that awful doctor.
I was diagnosed in 1996. It was a brutal affair, there were four medical students in the room as well as the consultant, I was on my own. The consultant said I had MS, there was nothing he could do and I was to come back in six months time. End of consultation. He sent a letter to my GP saying that I had unsteadiness of gait and something about my speech
I had to go home and look up in the Encyclopaedia Britannica what multiple sclerosis was. The Information was very limited.
I consider myself lucky that the diagnosis did not affect me mentally in anyway except that I went into denial. The denial continued until medical retirement in 2012.
The story of the patient could have been me, but in Finland. Even though I was given the diagnosis by an ms expert, I was left dumbfounded, in early pregnancy, for 4 months without any professional contact, help or information about the disease. Obviously I read as much as I could in books, but the shock, panic and anxiety is still living inside me, 30 years after.
I experience most of the points above but with 30 years of practice, medication and CBT I'm getting by pretty ok. Needless to say I hold grudge to the local health care system and myself for not getting help sooner.
I was dxd 2009 aged 39. Lots of tests as wasn’t sure what what wrong. Had MRI and Neuro consultant said if any news I will call you otherwise I’ll see you for scheduled appt on Saturday. Didn’t hear from him so assumed there was nothing to report from MRI. Got to Saturday, as I walked through the door he said ‘You’ve got MS’! I hadn’t even sat down. Total shock as he’d said he would call if he had news…Felt like I’d been run over by a bus as he said it so flippantly. Said I needed lumbar puncture to confirm. Had LP few days later and his comment was ‘Yes, definitely MS, go and get on with your life’ …..And that was that! No info, no what to do if it happens again, no nothing. I often have vivid dreams about the event which bring on symptoms while I’m asleep but then go when I wake up.
My neuro (not an MS specialist) had the MRI pictures on the wall and was rather pleased with himself saying that his suspicions had been correct ie aren’t I clever. Back in the early 2000s you had to have a second attack to get a DMT and when he ushered me out he said “if a cure is found I’ll send a telegram”. What really left a mark on me (c.18 years ago) was mentioning my diagnosis to my neighbour a few days later. Without really thinking he said “there’s a young woman with that round the corner, she can only move her eyelids”. I was more traumatised by that than the actual diagnosis and it still feels me with dread.
My story is practically identical to the woman in her 60s. Except my Aunt had died from her MS 5 years before my brutal diagnosis so I assumed I would also die pretty soon. My Neurologist showed me the MRI scan, said 'Your brain is lit up like Blackpool illuminations' told me I had MS, shook my hand, said Good Luck & ushered me out. No info packs, no follow up, not even the MS Society phone number. Luckily my brother was a GP & gave me details about MS & the Phone numbers I would need. I had severe disability and couldn't walk, serious bladder & bowel issues & cognitive issues. I couldn't get into work or concentrate enough to do my job so was given ill heath retirement. I didn't see another neurologist until 10 years after initial dx. No DMTs in those days- really was the dark ages. I remember that zip in the spine poster Campaign vividly. The slogan on the poster was 'A hope in Hell'.
I don't think I have PTSD but it was a terrible time to have MS.
Thankfully, if you're dx now, there is so much info and fantastic treatment options.
Imagine if those treatments had been available in the early 90s?
Same, worse at night, shake and sweat remember different parts of the journey to this point. I was pretty sure I had MS but was told things like my symptoms were ‘not organic’ (which means you’re a nutter) until MRI and LP done; bad relapses, side effects of treatments and unpleasant hospital stays. Conversely I also remember being treated at times with kindness and compassion, the nurses who used to administer my natalizumab - had to get infusions in oncology OPD - were sincere kind people who genuinely cared for their patients and didn’t talk down to me or lecture, which many hospital nurses have over the years, trotting out their ridiculous theories and opinions when I’m too weak to argue.
Thank you for giving us the knowledge and tools to prepare for what lies ahead or if lucky nothing. I truly appreciate the newsletters. I hope you are on the mend from your accident.
I was diagnosed with chronic urticaria in 2010 until 2019. I had 13 mths of no hives or medication in 2013 ~ twin pregnancy. Early 2019 I presented to my GP with numbness and pins and needles in left arm. I did have a small area on the top of my left shoulder that if I touched with a cold hand it was painful. He sent me to A&E to see a neurologists. CT scan, bloods done and then I was sent home to await MRI.
Early May I got an appointment with one of Prof. Orla Hardiman team and she confirmed MS. Like all the readers here I was devastated to hear it was MS. I assumed it was a trapped nerve.
There was 3 leisons on my brain & 1 on my spine which caused the numbness but the other 3 were silent ones as she said. The neurologist was amazing she explained everything to me the good the bad and the ugly.
In Aug of that year I had my lumbar puncture and started on Tecfidera in the Oct. During that time I had periods of I'm OK and sick with worry of what lies ahead.
By the Christmas I was accepting of IT. I don't look too far into the future and I remind myself on the tough days it's not a death sentence it's a life sentence.
Thank you so much for discussing topics like this! I received my diagnosis by text from a private neurologist in 2009 which had one line stating there were lesions on my brain so definitely MS. I obviously panicked and made an appointment with him the same week, walked in the door to be greeted with 'What are you doing here, there was no rush'. Was told there was no medication available to me, walked me to the door and asked me if I was like any of his other patients in the waiting room which was full of old people in wheelchairs (I was 29). Told me that I would be fine and come back when I couldn't live with it any longer. I spent the next 5+ years in denial but looking back now I must have been very bitter. Remember being very rude to someone collecting for the MS Society on the street, not my finest hour!
Hi I was diagnosed with MS in 1991. My first symptom was in my just before doing my A levels. It was optic neuritis in my left eye. I had to have the exam papers read to me, and I had to dictate the answers. A three were in the sciences as I wanted to be a vet.
At my first term at Hull University, stud biology, I had problems crossing the road, so I went to the University health centre. The doctor there scared the living daylights out of me. Without any test results, he stated that he thought that I had MS, and the way he was talking was like I was going to have problems walking. He decided to admit me to the hospital for tests. I wasn't even allowed to go home to get some stuff.
The staff at the hospital were excellent, they even explained to me that the MS could meant hat I don't have many symp and be fine. But again it might not, but there was only a small percentage that ended up in a wheelchair.
They told me exactly what any tests I had were for and they also teased me for being a student. I did refuse a lumbar puncture because I didn't like the idea of it, or being unable to sit up for 24 hours (that's what I was told at the time. I was 18 3/4 years old at the time and used to do a lot of walking.
When I was released from the hospital they told me that I provisionally had MS.
I also registered with a different GP practice in Hull. I was much happier with them and could ask them about anything.
When I was diagnosed the disease modifying drugs were not around then.
When they were developed I had to fight for 8 years to get on one. I ended up being involved with the study about risk sharing scheme. I was put on Copaxone, and originally I had to mix it up myself. This was before it came in premixed syringes.
But I am still on it (or the generic) and it seems to be doing something.
Definitely had a version of PTSD - heard it being described (a new description of the phenomenon) on the radio as I was driving, and realising that had happened to me, years previously when I asked my GP on being told I probably had 'a sclerosis' - could it lead to Multiple Sclerosis? Yes came the asnswer at which point I had to run from the room, thinking I was going to throw up. That was c40 years ago, I was in my mid twenties. I thought I was going to die within a year. Followed by years of anxiety.
Didn't have any info of course, never had DMTs (only one more 'episode' in late twenties). Eventual diagnosis about 30 years later was not too traumatic, just confirmation of what I already, depressingly, knew.
What happened with “smouldering MS” and this patient (given that she was on a low efficacy drug and has had MS for 30 years)? Any ideas why she has done so well?
Your patient (and you) might benefit from EMDR- Eye Movement Desensitisation and Reprocessing. It's now in the NICE Guidelines along with Trauma Focused Cognitive Behavioural Therapy as the therapies of choice for PTSD. There is a British EMDR Institute which trains, principally, psychiatrists, psychologists, nurses and social workers. It's available on the NHS and is relatively swift in its effects with a reasonable success rate and it seems to persist, i.e. those who find it helps, report that it doesn't wear off.
I received my ms diagnosis in the post, the week before Christmas, 2019. I have yet to come face to face with a neurologist. When I get a letter in the post now that isn't clearly marked on the outside, or indeed is marked as from the hospital, I get the most horrible feeling in the pit of my stomach and my hands start to tremble.
OMG that's terrible. I honestly thought things had improved since the 90s.
I found the leadup to my diagnosis quite traumatic. I was seen at three different hospitals. At the first, a consultant I saw was quite jolly and put me at ease. The next time I went, post-MRI I saw a registrar who did his best to frighten the life out of me. He listed a host of symptoms (which I now know would indicate Uthoff's) and didn't believe me when I said I had none of them. He said "this is very serious" and showed me my lesion-riddled brain. I didn't want to cry in front of this horrible man so I saved it until I got home. A friend was staying with me and thank goodness she was. She calmed me down and told me of an aunt who has MS and is fine.
It was a few more years and a few more relapses before I was diagnosed with "probable MS" at a different hospital but because "we don't do MS here" (it was the only hospital in London my GP could refer me to) he booked me another MRI and a referral to Queen Square. I liked him and by that point of course there were no surprises left, I was just desperate to be diagnosed.
I was treated very well at Queen Square too. Very textbook, with a registrar taking a full case history without mentioning MS before wheeling the consultant in to deliver the news.
But it was on the other side of Queen Square that I had that first MRI. I remember needing to go to Queen Square for work once in that limbo time and completely breaking down.
I work with people. I'm used to dealing with them. To someone like me it feels like my job is easy, and customer care shouldn't be hard. But watching colleagues deal with customers I can see it's not a talent everyone possesses. And it's the same with bedside manner. I wish I had never met that awful doctor.
Thinking about it again I don't know what would have happened if my friend hadn't been there
patrick burkejust now
I was diagnosed in 1996. It was a brutal affair, there were four medical students in the room as well as the consultant, I was on my own. The consultant said I had MS, there was nothing he could do and I was to come back in six months time. End of consultation. He sent a letter to my GP saying that I had unsteadiness of gait and something about my speech
I had to go home and look up in the Encyclopaedia Britannica what multiple sclerosis was. The Information was very limited.
I consider myself lucky that the diagnosis did not affect me mentally in anyway except that I went into denial. The denial continued until medical retirement in 2012.
The story of the patient could have been me, but in Finland. Even though I was given the diagnosis by an ms expert, I was left dumbfounded, in early pregnancy, for 4 months without any professional contact, help or information about the disease. Obviously I read as much as I could in books, but the shock, panic and anxiety is still living inside me, 30 years after.
I experience most of the points above but with 30 years of practice, medication and CBT I'm getting by pretty ok. Needless to say I hold grudge to the local health care system and myself for not getting help sooner.
I was dxd 2009 aged 39. Lots of tests as wasn’t sure what what wrong. Had MRI and Neuro consultant said if any news I will call you otherwise I’ll see you for scheduled appt on Saturday. Didn’t hear from him so assumed there was nothing to report from MRI. Got to Saturday, as I walked through the door he said ‘You’ve got MS’! I hadn’t even sat down. Total shock as he’d said he would call if he had news…Felt like I’d been run over by a bus as he said it so flippantly. Said I needed lumbar puncture to confirm. Had LP few days later and his comment was ‘Yes, definitely MS, go and get on with your life’ …..And that was that! No info, no what to do if it happens again, no nothing. I often have vivid dreams about the event which bring on symptoms while I’m asleep but then go when I wake up.
My neuro (not an MS specialist) had the MRI pictures on the wall and was rather pleased with himself saying that his suspicions had been correct ie aren’t I clever. Back in the early 2000s you had to have a second attack to get a DMT and when he ushered me out he said “if a cure is found I’ll send a telegram”. What really left a mark on me (c.18 years ago) was mentioning my diagnosis to my neighbour a few days later. Without really thinking he said “there’s a young woman with that round the corner, she can only move her eyelids”. I was more traumatised by that than the actual diagnosis and it still feels me with dread.
Unbelievable the ignorance of the layman, but even the professional! I hope you now have a better neuro.
My story is practically identical to the woman in her 60s. Except my Aunt had died from her MS 5 years before my brutal diagnosis so I assumed I would also die pretty soon. My Neurologist showed me the MRI scan, said 'Your brain is lit up like Blackpool illuminations' told me I had MS, shook my hand, said Good Luck & ushered me out. No info packs, no follow up, not even the MS Society phone number. Luckily my brother was a GP & gave me details about MS & the Phone numbers I would need. I had severe disability and couldn't walk, serious bladder & bowel issues & cognitive issues. I couldn't get into work or concentrate enough to do my job so was given ill heath retirement. I didn't see another neurologist until 10 years after initial dx. No DMTs in those days- really was the dark ages. I remember that zip in the spine poster Campaign vividly. The slogan on the poster was 'A hope in Hell'.
I don't think I have PTSD but it was a terrible time to have MS.
Thankfully, if you're dx now, there is so much info and fantastic treatment options.
Imagine if those treatments had been available in the early 90s?
Same, worse at night, shake and sweat remember different parts of the journey to this point. I was pretty sure I had MS but was told things like my symptoms were ‘not organic’ (which means you’re a nutter) until MRI and LP done; bad relapses, side effects of treatments and unpleasant hospital stays. Conversely I also remember being treated at times with kindness and compassion, the nurses who used to administer my natalizumab - had to get infusions in oncology OPD - were sincere kind people who genuinely cared for their patients and didn’t talk down to me or lecture, which many hospital nurses have over the years, trotting out their ridiculous theories and opinions when I’m too weak to argue.
Hi Prof. Gavin,
Thank you for giving us the knowledge and tools to prepare for what lies ahead or if lucky nothing. I truly appreciate the newsletters. I hope you are on the mend from your accident.
I was diagnosed with chronic urticaria in 2010 until 2019. I had 13 mths of no hives or medication in 2013 ~ twin pregnancy. Early 2019 I presented to my GP with numbness and pins and needles in left arm. I did have a small area on the top of my left shoulder that if I touched with a cold hand it was painful. He sent me to A&E to see a neurologists. CT scan, bloods done and then I was sent home to await MRI.
Early May I got an appointment with one of Prof. Orla Hardiman team and she confirmed MS. Like all the readers here I was devastated to hear it was MS. I assumed it was a trapped nerve.
There was 3 leisons on my brain & 1 on my spine which caused the numbness but the other 3 were silent ones as she said. The neurologist was amazing she explained everything to me the good the bad and the ugly.
In Aug of that year I had my lumbar puncture and started on Tecfidera in the Oct. During that time I had periods of I'm OK and sick with worry of what lies ahead.
By the Christmas I was accepting of IT. I don't look too far into the future and I remind myself on the tough days it's not a death sentence it's a life sentence.
Thank you so much for discussing topics like this! I received my diagnosis by text from a private neurologist in 2009 which had one line stating there were lesions on my brain so definitely MS. I obviously panicked and made an appointment with him the same week, walked in the door to be greeted with 'What are you doing here, there was no rush'. Was told there was no medication available to me, walked me to the door and asked me if I was like any of his other patients in the waiting room which was full of old people in wheelchairs (I was 29). Told me that I would be fine and come back when I couldn't live with it any longer. I spent the next 5+ years in denial but looking back now I must have been very bitter. Remember being very rude to someone collecting for the MS Society on the street, not my finest hour!
Hi I was diagnosed with MS in 1991. My first symptom was in my just before doing my A levels. It was optic neuritis in my left eye. I had to have the exam papers read to me, and I had to dictate the answers. A three were in the sciences as I wanted to be a vet.
At my first term at Hull University, stud biology, I had problems crossing the road, so I went to the University health centre. The doctor there scared the living daylights out of me. Without any test results, he stated that he thought that I had MS, and the way he was talking was like I was going to have problems walking. He decided to admit me to the hospital for tests. I wasn't even allowed to go home to get some stuff.
The staff at the hospital were excellent, they even explained to me that the MS could meant hat I don't have many symp and be fine. But again it might not, but there was only a small percentage that ended up in a wheelchair.
They told me exactly what any tests I had were for and they also teased me for being a student. I did refuse a lumbar puncture because I didn't like the idea of it, or being unable to sit up for 24 hours (that's what I was told at the time. I was 18 3/4 years old at the time and used to do a lot of walking.
When I was released from the hospital they told me that I provisionally had MS.
I also registered with a different GP practice in Hull. I was much happier with them and could ask them about anything.
When I was diagnosed the disease modifying drugs were not around then.
When they were developed I had to fight for 8 years to get on one. I ended up being involved with the study about risk sharing scheme. I was put on Copaxone, and originally I had to mix it up myself. This was before it came in premixed syringes.
But I am still on it (or the generic) and it seems to be doing something.
Definitely had a version of PTSD - heard it being described (a new description of the phenomenon) on the radio as I was driving, and realising that had happened to me, years previously when I asked my GP on being told I probably had 'a sclerosis' - could it lead to Multiple Sclerosis? Yes came the asnswer at which point I had to run from the room, thinking I was going to throw up. That was c40 years ago, I was in my mid twenties. I thought I was going to die within a year. Followed by years of anxiety.
Didn't have any info of course, never had DMTs (only one more 'episode' in late twenties). Eventual diagnosis about 30 years later was not too traumatic, just confirmation of what I already, depressingly, knew.
What happened with “smouldering MS” and this patient (given that she was on a low efficacy drug and has had MS for 30 years)? Any ideas why she has done so well?
Your patient (and you) might benefit from EMDR- Eye Movement Desensitisation and Reprocessing. It's now in the NICE Guidelines along with Trauma Focused Cognitive Behavioural Therapy as the therapies of choice for PTSD. There is a British EMDR Institute which trains, principally, psychiatrists, psychologists, nurses and social workers. It's available on the NHS and is relatively swift in its effects with a reasonable success rate and it seems to persist, i.e. those who find it helps, report that it doesn't wear off.