I was due to get married in the July and in April my neuro said he wanted to see my fiancé as when he found out what was wrong with me, he might not want to get married!!
My GP was dictating a letter to the neurologist he was referring me to, and he used the words “she is quite happy about the diagnosis “ to which I interjected with - happy is not the adjective I’d use! He glibly replied oh sorry and carried on dictating! He was lucky there wasn’t a scalpel lying around….
I am absolutely certain that the words that were used to me ('I want you to go away and wait for things to happen to you') caused the relapse that did the definitive damage to my leg, leaving me with fixed disability early in the disease course. There was one important silver lining, though. My GP was so horrified that she referred me to Queen Square, where I came under your care.
I was diagnosed in 1982 when there were no DMTs. I was terrified. For the next 37 years I gave myself small neurological tests weekly, sometimes daily, hoping I was going to be OK, but expecting the worst. Thankfully my physical progression has been mild. Emotionally though MS had never been far from my thoughts. How could it not be, right? Three years ago I had an opportunity to try psychedelic therapy and one of my intentions was to come to an accommodation with my diagnosis of Multiple Sclerosis. I had the experience on a Saturday. Sunday was a simple day of rest. That Monday I awoke and my fears (or PTSD) had completely vanished! I still have MS, of course, but a huge emotional weight came off my shoulders and remains so to this day. It was amazing, I might say a miracle.
I received my diagnosis in 1996 by a consultant and there were 3 or 4 medical students also in the room but no one else. I had never heard of multiple sclerosis until then. I was told it was an incurable disease and sent on my way, the consultant was no help nor offered any sympathy. I think the appointment lasted only 10 or 15 minutes and it was all very brutal. I'm still haunted by that visit to the hospital.
What I find shocking is that MS services and provision in the UK remains so poor! Still no agreed pathway for diagnosis or gold standard of care. As many neurologists continue to have no interest in keeping up to date with current trends the postcode lottery continues. Many pwMS are lucky to even have a specialist Neurologist. Or a neurologist at all. In 2022 we should be kicking up a stink about it. People with MS offered no DMD, whaaaaat! pwMS with no input medical whatsoever.
It should be viewed as an outrage, but of course it is not. MS is an invisible condition to most of the population
Undoubtedly it would be of benefit to have advanced communications skill training for MS Doctors and Nurses, but it is the icing on the cake. There is no cake.
It is fantastic of you to get out and meet pwMS in other settings. It will have been precious to many of them. Being seen and heard is incredibly valuable.
I'm sorry to hear that you experience PTSD given how hard you worked on fixing your body it can be especially hard that the mind isn't going to be obedient. It is an example of how counselling or therapy in the immediacy of a trauma is not necessarily of most benefit. Often it is week/months or even longer later we [I felt] the need.
My daughter was 18, when we met a consultant we’d never seen before. He opened her file and said Yes, you definitely have MS.
She hadn’t known this was even being considered, and emotionally she was wrecked - 10 years on she is having counselling but still has flashbacks and crippling panic attacks and her life is blighted by health anxiety.
I rang the consultant but he was just dismissive, and couldn’t care less. I am still so angry towards him for the harm he’s done to my daughter.
Yes, the six month wait to see a neurologist added to my anxiety, which was compounded by a definite diagnosis one year later. Visits to my current neurologist are still anxiety inducing. Talk therapy with someone who specializes in treating MS patients has helped greatly and I am fortunate to have him on my team.
I was told late one Friday afternoon that I had MS, by a register in a bad mood (he had MS himself, and was not in a good place and should not have been allowed to do the job he was doing). He gave me no support and dismissed my comment that lesions in the brainstem (my lesions) were not a good place to be. I found out years later by accident that there was a neuro pyscologist. However my cancer diagnosis was even worse, one Monday morning recently I got a phone call to say the consultant needed to talk to you, 3 hours later "you have cancer", I have ordered scans to see if it has spread. I wasn't told if it was the mild or aggressive form, I wasn't give the contact number of the oncology nurse, I was left another 24 days before I got an appointment to be told I had the serious, aggressive form that had spread. Have I been unlucky or is there a cultural problem within the NHS currently that has left me traumatised by the way life changing and potentially life ending diagnosis are given?
I was diagnosed 14 months ago and I honestly don’t think there’s anything the neuro could’ve said differently, I needed to go away and digest the shock - the nurse however is a bit of a problem.
I agree, there should be an opportunity to receive some form of counselling through this. The lack of relationship with the “HCP’s” is not helpful and I don’t feel comfortable speaking to anyone about this, even those in the MS community.
It’s mentally very tough and it’s easy to isolate myself, I’ve no idea of the long term outcome of this
the neuro who dx'd me was a tad flippant.. he scrolled thru the MRI images and kept muttering to himself that this was classic MS.. before completing the other testing required.. ie evoked potentials, EMG, spinal tap etc... THen he ordered the dreaded spinal tap which hurt so badly i thought i was dying. He kept pushing me forward saying that i needed to open up my spine more... lol.. i wanted to deck him. He didnt wait until the anesthetic took full effect before he drilled me with that tap needle. I was in agony and if looks could have killed, the nurse attending would have been brought on murder charges. When it was all said and done, he told me that all the findings indicated and backed up MS and I had to decide whether to go on a DMT or not.. no info, no nothing... This was in 2015. I was 57. I am now 64 and because of the late DX I have pretty bad disability due to being undiagnosed for decades. I was relieved to find out what was actually wrong with me but devastated at the same time..
I didn’t come here to be nasty, but some reality check would be helpful in my opinion. I am a former psychologist (here in The US) with MS for 35 years. I have no experience with or other knowledge of the NHS but it sounds as if the doctors may be quite limited in their empathic abilities or time to communicate with such. I don’t know and am not the person to offer a reliable point of view regarding the NHS..
Dr G’s existence was threatened by his accident. It was shocking for him. Nothing in his wildest imagination on that day would have told him what was coming. This is often true with MS, sooner or later, for most of us. How do we respond to such a shock to the system when it comes? How can a professional, untrained to initiate such potentially shocking interactions, and a patient, unready or ill-prepared for same, engage with one another in a useful manner without a planned, measurable outcome?
I hate to be the fly on the wall, the naysayer, the nasty person. But if the truth fits, you at least have to consider it…We need to summarize the characteristics of resilient people and how they got that way. Then, learn to be like them. But we are talking here about a person’s existence from day one. Kind of hard to isolate and change that stuff.
So how do you train an army of soldiers not prepared to fight? That includes providers as well as patients. That is the problem. 1) You can’t train someone to fight, if you don’t know how to do it yourself, and 2) the overwhelming odds are (as patient), you’re not ready to learn anyway, at least not right away. How do you make a situation like that turn out positive?
As to the initial survey, self reported observations; open-ended question with no (none) guidance or follow-up questions, seldom lead to negative self reports. MS is threatening and shocking, and there is no surprise to me that the delivery of such a message will also be seen in a negative light. A classic case of blaming the messenger? We all know that one event can be seen in two ways by two different people. That’s the basis for controlled studies, to prevent this. So with all due respect, I didn’t find the results earth shattering like Dr. G. It’s kind of what I would have expected, given all the variables.
None of this is to say that professionals destined to deliver bad news, don’t need to be well versed with interpersonal interactions in a sensitive, empathic and therapeutic manner (making referrals as needed), and should have had this as part of their internships, in an applied manner, with oversight by someone who is well versed in being the bearer of bad news.
Finally, an ironic part of all this is- are we not telling the public how awful MS is? So once they get the news personally, they are shocked as well! I assume that’s changing a bit with better treatments. But I hear complaints of “But you look so well” when feedback is too good. And in my case, the employer is shocked and “pre-loaded” then, to discriminate, based on what they’ve heard about MS. Why train and invest in an employee who can't handle it and is not going to be around? They don’t want to have to deal with PTSD either.
I had optic neuritis in Oct 20 then contracted viral encephalitis in hospital. I had several MRI's in the month that followed all that were described as atypical and tests that were not expected. I was then given a booklet and told to pick my own DMT. After being on the Tysabri 5 months my new MRI showed new enhancing lesions again in areas not typical for MS. When I queried this I was told I needed to see a psychologist to accept my diagnosis! I know I have something wrong with me. I just am not sure it is MS! I had a new MRI after 18 months on Tysabri without contrast as per Neuros instructions and they then said no new enhancing lesions so Tysabri is working! I have missed an infusion due to covid in our household and feel better than ever. I am not sure I want to go back.
I was due to get married in the July and in April my neuro said he wanted to see my fiancé as when he found out what was wrong with me, he might not want to get married!!
My GP was dictating a letter to the neurologist he was referring me to, and he used the words “she is quite happy about the diagnosis “ to which I interjected with - happy is not the adjective I’d use! He glibly replied oh sorry and carried on dictating! He was lucky there wasn’t a scalpel lying around….
I am absolutely certain that the words that were used to me ('I want you to go away and wait for things to happen to you') caused the relapse that did the definitive damage to my leg, leaving me with fixed disability early in the disease course. There was one important silver lining, though. My GP was so horrified that she referred me to Queen Square, where I came under your care.
I was diagnosed in 1982 when there were no DMTs. I was terrified. For the next 37 years I gave myself small neurological tests weekly, sometimes daily, hoping I was going to be OK, but expecting the worst. Thankfully my physical progression has been mild. Emotionally though MS had never been far from my thoughts. How could it not be, right? Three years ago I had an opportunity to try psychedelic therapy and one of my intentions was to come to an accommodation with my diagnosis of Multiple Sclerosis. I had the experience on a Saturday. Sunday was a simple day of rest. That Monday I awoke and my fears (or PTSD) had completely vanished! I still have MS, of course, but a huge emotional weight came off my shoulders and remains so to this day. It was amazing, I might say a miracle.
I received my diagnosis in 1996 by a consultant and there were 3 or 4 medical students also in the room but no one else. I had never heard of multiple sclerosis until then. I was told it was an incurable disease and sent on my way, the consultant was no help nor offered any sympathy. I think the appointment lasted only 10 or 15 minutes and it was all very brutal. I'm still haunted by that visit to the hospital.
What I find shocking is that MS services and provision in the UK remains so poor! Still no agreed pathway for diagnosis or gold standard of care. As many neurologists continue to have no interest in keeping up to date with current trends the postcode lottery continues. Many pwMS are lucky to even have a specialist Neurologist. Or a neurologist at all. In 2022 we should be kicking up a stink about it. People with MS offered no DMD, whaaaaat! pwMS with no input medical whatsoever.
It should be viewed as an outrage, but of course it is not. MS is an invisible condition to most of the population
Undoubtedly it would be of benefit to have advanced communications skill training for MS Doctors and Nurses, but it is the icing on the cake. There is no cake.
It is fantastic of you to get out and meet pwMS in other settings. It will have been precious to many of them. Being seen and heard is incredibly valuable.
I'm sorry to hear that you experience PTSD given how hard you worked on fixing your body it can be especially hard that the mind isn't going to be obedient. It is an example of how counselling or therapy in the immediacy of a trauma is not necessarily of most benefit. Often it is week/months or even longer later we [I felt] the need.
I’ll never forget me asking ‘what advice do you have?’ And the neuro replying, ‘eat less red meat’.
That. Was. It.
My daughter was 18, when we met a consultant we’d never seen before. He opened her file and said Yes, you definitely have MS.
She hadn’t known this was even being considered, and emotionally she was wrecked - 10 years on she is having counselling but still has flashbacks and crippling panic attacks and her life is blighted by health anxiety.
I rang the consultant but he was just dismissive, and couldn’t care less. I am still so angry towards him for the harm he’s done to my daughter.
Yes, the six month wait to see a neurologist added to my anxiety, which was compounded by a definite diagnosis one year later. Visits to my current neurologist are still anxiety inducing. Talk therapy with someone who specializes in treating MS patients has helped greatly and I am fortunate to have him on my team.
PS I’m glad your health is improving!
Thank you for all you do to help.
So glad your outlook is good, I can imagine the wait was pretty daunting, and thank you for highlighting these issues.
I was told late one Friday afternoon that I had MS, by a register in a bad mood (he had MS himself, and was not in a good place and should not have been allowed to do the job he was doing). He gave me no support and dismissed my comment that lesions in the brainstem (my lesions) were not a good place to be. I found out years later by accident that there was a neuro pyscologist. However my cancer diagnosis was even worse, one Monday morning recently I got a phone call to say the consultant needed to talk to you, 3 hours later "you have cancer", I have ordered scans to see if it has spread. I wasn't told if it was the mild or aggressive form, I wasn't give the contact number of the oncology nurse, I was left another 24 days before I got an appointment to be told I had the serious, aggressive form that had spread. Have I been unlucky or is there a cultural problem within the NHS currently that has left me traumatised by the way life changing and potentially life ending diagnosis are given?
I was diagnosed 14 months ago and I honestly don’t think there’s anything the neuro could’ve said differently, I needed to go away and digest the shock - the nurse however is a bit of a problem.
I agree, there should be an opportunity to receive some form of counselling through this. The lack of relationship with the “HCP’s” is not helpful and I don’t feel comfortable speaking to anyone about this, even those in the MS community.
It’s mentally very tough and it’s easy to isolate myself, I’ve no idea of the long term outcome of this
As a passionate psychologist and behavioral therapist, recently diagnosed with MS, I am definitely interested in working together on this!
the neuro who dx'd me was a tad flippant.. he scrolled thru the MRI images and kept muttering to himself that this was classic MS.. before completing the other testing required.. ie evoked potentials, EMG, spinal tap etc... THen he ordered the dreaded spinal tap which hurt so badly i thought i was dying. He kept pushing me forward saying that i needed to open up my spine more... lol.. i wanted to deck him. He didnt wait until the anesthetic took full effect before he drilled me with that tap needle. I was in agony and if looks could have killed, the nurse attending would have been brought on murder charges. When it was all said and done, he told me that all the findings indicated and backed up MS and I had to decide whether to go on a DMT or not.. no info, no nothing... This was in 2015. I was 57. I am now 64 and because of the late DX I have pretty bad disability due to being undiagnosed for decades. I was relieved to find out what was actually wrong with me but devastated at the same time..
I didn’t come here to be nasty, but some reality check would be helpful in my opinion. I am a former psychologist (here in The US) with MS for 35 years. I have no experience with or other knowledge of the NHS but it sounds as if the doctors may be quite limited in their empathic abilities or time to communicate with such. I don’t know and am not the person to offer a reliable point of view regarding the NHS..
Dr G’s existence was threatened by his accident. It was shocking for him. Nothing in his wildest imagination on that day would have told him what was coming. This is often true with MS, sooner or later, for most of us. How do we respond to such a shock to the system when it comes? How can a professional, untrained to initiate such potentially shocking interactions, and a patient, unready or ill-prepared for same, engage with one another in a useful manner without a planned, measurable outcome?
I hate to be the fly on the wall, the naysayer, the nasty person. But if the truth fits, you at least have to consider it…We need to summarize the characteristics of resilient people and how they got that way. Then, learn to be like them. But we are talking here about a person’s existence from day one. Kind of hard to isolate and change that stuff.
So how do you train an army of soldiers not prepared to fight? That includes providers as well as patients. That is the problem. 1) You can’t train someone to fight, if you don’t know how to do it yourself, and 2) the overwhelming odds are (as patient), you’re not ready to learn anyway, at least not right away. How do you make a situation like that turn out positive?
As to the initial survey, self reported observations; open-ended question with no (none) guidance or follow-up questions, seldom lead to negative self reports. MS is threatening and shocking, and there is no surprise to me that the delivery of such a message will also be seen in a negative light. A classic case of blaming the messenger? We all know that one event can be seen in two ways by two different people. That’s the basis for controlled studies, to prevent this. So with all due respect, I didn’t find the results earth shattering like Dr. G. It’s kind of what I would have expected, given all the variables.
None of this is to say that professionals destined to deliver bad news, don’t need to be well versed with interpersonal interactions in a sensitive, empathic and therapeutic manner (making referrals as needed), and should have had this as part of their internships, in an applied manner, with oversight by someone who is well versed in being the bearer of bad news.
Finally, an ironic part of all this is- are we not telling the public how awful MS is? So once they get the news personally, they are shocked as well! I assume that’s changing a bit with better treatments. But I hear complaints of “But you look so well” when feedback is too good. And in my case, the employer is shocked and “pre-loaded” then, to discriminate, based on what they’ve heard about MS. Why train and invest in an employee who can't handle it and is not going to be around? They don’t want to have to deal with PTSD either.
I had optic neuritis in Oct 20 then contracted viral encephalitis in hospital. I had several MRI's in the month that followed all that were described as atypical and tests that were not expected. I was then given a booklet and told to pick my own DMT. After being on the Tysabri 5 months my new MRI showed new enhancing lesions again in areas not typical for MS. When I queried this I was told I needed to see a psychologist to accept my diagnosis! I know I have something wrong with me. I just am not sure it is MS! I had a new MRI after 18 months on Tysabri without contrast as per Neuros instructions and they then said no new enhancing lesions so Tysabri is working! I have missed an infusion due to covid in our household and feel better than ever. I am not sure I want to go back.