I first developed nerve pain in my hands in 2009, misdiagnosed as carpal tunnel. When surgery failed I saw a neurologist in 2010 who said I did not have MS, but did have a patch of inflammation on my spinal chord. After a relapse in November 2018 which affected my balance- misdiagnosed as vertigo - I eventually saw a neurologist at the hospital I worked at, only arranged by a medic friend with a mother with MS who recognised the symptoms, and was finally diagnosed with MS in April 2019. He told me I should have been diagnosed in 2009. Started on Tecfidera immediately, no relapses since but have since had to medically retire. Disappointing that I was not diagnosed in 2010, when I might have started treatment earlier.
This article was so enthralling and moving to read. I have had MS since 1992 with a few relapses early on and nothing really to note since. I have been off beta interferon for about 15 yrs. I have secondary MS with minimal disability. I walk slowly with a stick and suffer from Fatigue. My neurologist says there are no drugs or nothing for inactive disease? It feels a bit like you life in their hands.
I know exactly how you feel! There are loads of options if you have severe disease but sometimes feels like us (lucky ones!) who have less activity can get forgot about and left to slowly rot in the corner.
I was diagnosed with CIS 03/15 following a bad hospitalising episode. I was discharged with the diagnosis of CIS. My lumbar puncture was positive and I had quite a few leasions but no concrete dissemination in time could be proven. No DMTs were therefore available. I had probably had MS for a while and I was pretty convinced I had it. In 06/15, just as i returned to work I had another relapse. Fortunately this opened up my eligibility for DMTs, however, I believe it was this relapse that left me with some permanent cognitive damage / fatigue. I went for Lemtrada and would of made the same decision at CIS stage. Maybe I would still have my job if Lem had been available to me straight away although saying that I would of been lucky to get through the screening etc in time the next relapse anyway. The point stands though. IMO CiS patients should be given the option to save their brain.
Ps I feel lucky to of been moved from CIS status to RRMS in what was a relatively short space of time, which probably helped maintain my mobility. I'm grateful that I wasn't in limbo land for years like some people.
Hi i’ve been diagnosed with optic neuritis, but nothing obvious in MRI and my lumbar puncture was clean. My doctors tell me to wait and see what future will bring, but is there anything I can do to stop MS in „possible” beginning? Great work on the story btw
Get a second opinion no. 1 by a reputable MSologist, whether on the NHS or private. If you read the barts blog, there is a lot of positivity around cladribine as an option to treat CIS. May not be available though depending where you live
Hi, my daughter is 27 and was diagnosed with ADEM when she was 14. She was then diagnosed with MS at 18, and fell apart emotionally. She has a few symptoms but her real problem is that she is overwhelmed with terror. Last year, her neurologist carried out another MRI and, understanding her fears, reassured her that she was fine - the MRI showed only 2 new lesions, in a 'silent' part of her brain. So she is much calmer - but I'm worrying that we should doing something to protect her brain. Any thoughts??
I assume she is on a DMT? If not she should probably consider starting treatment as she has active MS.
I would recommend she reads the 'Brain Health: Time Matters' policy document to get an understanding of the principles of treating MS in the modern era.
I was diagnosed with CIS in 2017, just been told today that I have 3 new brain lesions and have been diagnosed with MS. The diagnosis of CIS was based on a spinal cord lesion, I had 2 spots in my brain but they weren't sure if they were related to what I was experiencing at the time or not.
I read this article with great interest and with a feeling of "if only we knew then what we know now". I was diagnosed with MS by a private neurologist back in 2011 after a few months of tests showing MRI lesions in brain and spine and oligoclonal bands. Symptoms on presentation were tingling in both legs on walking. He suggested treatment starting with Avonex. However, on moving into the public system (in Ireland) to avail of more general free support services after my first consult was told I likely had CIS and was not offered any meds till a first relapse 3 years later. A very cautious approach compared to my private neurologist's approach. How I wish that I hadnt taken it further and worked for treatment earlier. Perhaps because the prospect of taking (what seemed like at the time) a rather heavy hitting medication with the prospect of self injection which didn't appeal, for a condition that didn't affect me that much.
I find that the understanding of the risk/benefit of a med could be called out more clearly to those of us who want to be informed and shouldn't rely on asking to be told more as we are clearly now given choices in which med to choose
I have CIS. I was diagnosed in 2017. One active, demyelinating lesion was seen in my thalamus/right midbrain. My symptoms have have been dynamic over the years, but I have had no new lesions. I have never been offered treatment (low lesion load must be the reason), only meds like gabapentin and baclofen. My CSF was tested about one month after the event, but there were no O-bands. I was quickly enrolled in the EPIC/ORIGINS research study at UCSF…they were very enthusiastic about it and seem to think I’m an interesting case.
I still wish, at times, that I could go back to being who I was before all of this happened. I appreciate your newsletters, and it is so refreshing to hear a neurologist talk about CIS. It is a very isolating and confusing “diagnosis”. Especially for those of us who live with chronic symptoms (neuropathic pain, heat intolerance, chronic fatigue, bizarre muscular changes in response to exercise, etc.).
I continue to be monitored for MS (by a neurologist at Cleveland Clinic). My next MRI is in October back at UCSF (free, high-quality scans/for the study), though I live in Detroit now. The watchful waiting continues…
Please, please, please get a new neurologist who will actually treat you! I am shocked that someone at the Cleveland Clinic is doing "watchful waiting" with you, I always thought they were very aggressive about treating MS. Generic cladribine costs pennies if you can't get coverage/can't pay out of pocket for Lemtrada.
Thanks for your response. I appreciate the input. My first neurologist at CC said in passing that I could take medication if I wanted to, but he strongly discouraged it. I forgot about that until recently. He has since retired, but my current neurologist has never discussed this option with me. It’s very confusing.
I was diagnosed with CIS in 2018 after being hospitalized with optic neuritis, the first symptom I'd ever noticed. At the time I think I just had an old spinal cord lesion and so was not diagnosable under McDonald yet. But this formal CIS diagnosis was after an ophthalmologist and at least two different neurologists had informally referred to it as "probably MS". At the time I was also working in MS research at a pharmaceutical company where many meetings started with an "example" MRI showing brain volume loss due to MS. So a month or two later when my neurologist said I could choose between waiting or starting a DMT, I chose to start a DMT. I figured I could never forgive myself if I suffered substantial damage while "waiting". A year or so later when I got a follow-up MRI on a newer/better machine, there were two brain lesions that, in retrospect, had been present on my MRI at diagnosis, but not recognizable as lesions.
Did your doctors actively encourage or discourage you from starting meds? I was once told in passing that I could take medication if I wanted, but my doctor actively discouraged it, saying he did not recommend it. This continues to leave me feeling confused.
I don't really remember. I don't think she ever said anything like "I think you should" (I know another MSer who "quit" my doctor because she wouldn't "just tell [her] what to do") but she did press on the point of "I know we can't diagnose you with MS, but this is MS"
I was diagnosed with CIS in 2013 (but I had symptoms many years before that, I was pretty used to them, so my diagnosis was more or less 'by accident').
My MRI 6 months later showed a new lesion, but I was still not put on a DMT.
About 6 months later, I got a viral infection with symptoms, and - strange but true - I got put on a DMT.... There was never really a moment where the diagnosis was changed from CIS to MS. I was just put on a DMT about a year after the diagnosis of CIS, for a reason I still don't really get;)
I wonder if neurologists are not also sometimes guided by patients attitude in their decision to start a DMT? I was so used to the symptoms by the time I got diagnosed in 2013, that I was really open to (or even pushed) the notion that it was a 'one time' thing, that probably would never happen again.
I had my first MS symptom in 2015, pins and needles on my face - the family Doctor recommended a brain CT which came back normal. In the next four years, I had period of pins and needles in my hands but they always went away. I also thought I was a hypochondriac. In 2019, after my entire body was covered in pins and needles and I lost my balance, I presented to hospital. I had an MRI and lumbar puncture. C2 lesion causing trouble. Diagnosed with RRMS and started cladribine straight away. Currently, 2 years of NEDADI.
I presented with CIS (numb left leg) in 2005 but it was put down to a skiing accident I had a few months previous. My torso then went numb in 2009 leading to my diagnosis. As there was 4 years between episodes, I wasn't offered any treatment and was told to go away and come back when i couldn't live with it any longer. I basically ignored any symptoms for the next 10 years as I could 'live with them'. My mobility then started to decline rapidly so went back to a Neurologist in 2018 but no new lesions or activity so no treatment offered. Am now considering HSCT as a last ditch attempt before I buy the wheelchair!!
This post resonates with me as I was pushing for further investigations when given a CIS diagnosis in 2015 but the neurologist was completely dismissive. I don't recall him even mentioning MS to be honest. It was explained to me as a clinical phenomenon. Was he trying to save me the worry? the NHS budget? or just a poor practitioner? the problem is that for a patient experiencing their first medical issue, CIS doesn't sound too bad. Good news really when most think they have a brain tumour. Also, as access to neurologists usually takes 6 months unless hospitalised, they are placed on a pedestal and generally patients will take what they say as gospel. I now have the opposite approach. I question everything which ticks my current neuro right off. Whats frustrating for me is that i am totally pro treatment. I would of taken the biggest gun available, which is why i am now pursuing HSCT despite being on Ocrelizumab and relatively low EDSS (1). Based on the above, i may be too late (bands present etc). However, does the fact that the treatment enters the brain not give me a fighting chance? Thanks
I was diagnosed as CIS then asked to watch and wait to see if I relapsed which I did six months later. First treatments Avonex and Copaxone which didn’t work. Went on to Tysabri. However I’d had neuro symptoms for many years before the CIS diagnosis so it never was CIS in my case and I wonder how many people are similar.
I had CIS diagnosed 4y ago, with brain/spinal cord lesions and OCBs. Two episodes of sensory symptoms and one period of painful spasms later and my neuro has offered me DMTs. I chose not to have any, preferring to await diagnosis, and he supported me in my decision, so this article is really fascinating. I am awaiting results of my most recent MRI) Thank you.
I first developed nerve pain in my hands in 2009, misdiagnosed as carpal tunnel. When surgery failed I saw a neurologist in 2010 who said I did not have MS, but did have a patch of inflammation on my spinal chord. After a relapse in November 2018 which affected my balance- misdiagnosed as vertigo - I eventually saw a neurologist at the hospital I worked at, only arranged by a medic friend with a mother with MS who recognised the symptoms, and was finally diagnosed with MS in April 2019. He told me I should have been diagnosed in 2009. Started on Tecfidera immediately, no relapses since but have since had to medically retire. Disappointing that I was not diagnosed in 2010, when I might have started treatment earlier.
This article was so enthralling and moving to read. I have had MS since 1992 with a few relapses early on and nothing really to note since. I have been off beta interferon for about 15 yrs. I have secondary MS with minimal disability. I walk slowly with a stick and suffer from Fatigue. My neurologist says there are no drugs or nothing for inactive disease? It feels a bit like you life in their hands.
I know exactly how you feel! There are loads of options if you have severe disease but sometimes feels like us (lucky ones!) who have less activity can get forgot about and left to slowly rot in the corner.
I was diagnosed with CIS 03/15 following a bad hospitalising episode. I was discharged with the diagnosis of CIS. My lumbar puncture was positive and I had quite a few leasions but no concrete dissemination in time could be proven. No DMTs were therefore available. I had probably had MS for a while and I was pretty convinced I had it. In 06/15, just as i returned to work I had another relapse. Fortunately this opened up my eligibility for DMTs, however, I believe it was this relapse that left me with some permanent cognitive damage / fatigue. I went for Lemtrada and would of made the same decision at CIS stage. Maybe I would still have my job if Lem had been available to me straight away although saying that I would of been lucky to get through the screening etc in time the next relapse anyway. The point stands though. IMO CiS patients should be given the option to save their brain.
Ps I feel lucky to of been moved from CIS status to RRMS in what was a relatively short space of time, which probably helped maintain my mobility. I'm grateful that I wasn't in limbo land for years like some people.
Hi i’ve been diagnosed with optic neuritis, but nothing obvious in MRI and my lumbar puncture was clean. My doctors tell me to wait and see what future will bring, but is there anything I can do to stop MS in „possible” beginning? Great work on the story btw
Get a second opinion no. 1 by a reputable MSologist, whether on the NHS or private. If you read the barts blog, there is a lot of positivity around cladribine as an option to treat CIS. May not be available though depending where you live
Hi, my daughter is 27 and was diagnosed with ADEM when she was 14. She was then diagnosed with MS at 18, and fell apart emotionally. She has a few symptoms but her real problem is that she is overwhelmed with terror. Last year, her neurologist carried out another MRI and, understanding her fears, reassured her that she was fine - the MRI showed only 2 new lesions, in a 'silent' part of her brain. So she is much calmer - but I'm worrying that we should doing something to protect her brain. Any thoughts??
I assume she is on a DMT? If not she should probably consider starting treatment as she has active MS.
I would recommend she reads the 'Brain Health: Time Matters' policy document to get an understanding of the principles of treating MS in the modern era.
https://www.msbrainhealth.org/
I was diagnosed with CIS in 2017, just been told today that I have 3 new brain lesions and have been diagnosed with MS. The diagnosis of CIS was based on a spinal cord lesion, I had 2 spots in my brain but they weren't sure if they were related to what I was experiencing at the time or not.
Get your patients to recall events of MS in the prodromal phase, this turns their CIS into MS and they can get onto cladribine ASAP.
I read this article with great interest and with a feeling of "if only we knew then what we know now". I was diagnosed with MS by a private neurologist back in 2011 after a few months of tests showing MRI lesions in brain and spine and oligoclonal bands. Symptoms on presentation were tingling in both legs on walking. He suggested treatment starting with Avonex. However, on moving into the public system (in Ireland) to avail of more general free support services after my first consult was told I likely had CIS and was not offered any meds till a first relapse 3 years later. A very cautious approach compared to my private neurologist's approach. How I wish that I hadnt taken it further and worked for treatment earlier. Perhaps because the prospect of taking (what seemed like at the time) a rather heavy hitting medication with the prospect of self injection which didn't appeal, for a condition that didn't affect me that much.
I find that the understanding of the risk/benefit of a med could be called out more clearly to those of us who want to be informed and shouldn't rely on asking to be told more as we are clearly now given choices in which med to choose
I have CIS. I was diagnosed in 2017. One active, demyelinating lesion was seen in my thalamus/right midbrain. My symptoms have have been dynamic over the years, but I have had no new lesions. I have never been offered treatment (low lesion load must be the reason), only meds like gabapentin and baclofen. My CSF was tested about one month after the event, but there were no O-bands. I was quickly enrolled in the EPIC/ORIGINS research study at UCSF…they were very enthusiastic about it and seem to think I’m an interesting case.
I still wish, at times, that I could go back to being who I was before all of this happened. I appreciate your newsletters, and it is so refreshing to hear a neurologist talk about CIS. It is a very isolating and confusing “diagnosis”. Especially for those of us who live with chronic symptoms (neuropathic pain, heat intolerance, chronic fatigue, bizarre muscular changes in response to exercise, etc.).
I continue to be monitored for MS (by a neurologist at Cleveland Clinic). My next MRI is in October back at UCSF (free, high-quality scans/for the study), though I live in Detroit now. The watchful waiting continues…
Please, please, please get a new neurologist who will actually treat you! I am shocked that someone at the Cleveland Clinic is doing "watchful waiting" with you, I always thought they were very aggressive about treating MS. Generic cladribine costs pennies if you can't get coverage/can't pay out of pocket for Lemtrada.
Thanks for your response. I appreciate the input. My first neurologist at CC said in passing that I could take medication if I wanted to, but he strongly discouraged it. I forgot about that until recently. He has since retired, but my current neurologist has never discussed this option with me. It’s very confusing.
I was diagnosed with CIS in 2018 after being hospitalized with optic neuritis, the first symptom I'd ever noticed. At the time I think I just had an old spinal cord lesion and so was not diagnosable under McDonald yet. But this formal CIS diagnosis was after an ophthalmologist and at least two different neurologists had informally referred to it as "probably MS". At the time I was also working in MS research at a pharmaceutical company where many meetings started with an "example" MRI showing brain volume loss due to MS. So a month or two later when my neurologist said I could choose between waiting or starting a DMT, I chose to start a DMT. I figured I could never forgive myself if I suffered substantial damage while "waiting". A year or so later when I got a follow-up MRI on a newer/better machine, there were two brain lesions that, in retrospect, had been present on my MRI at diagnosis, but not recognizable as lesions.
Did your doctors actively encourage or discourage you from starting meds? I was once told in passing that I could take medication if I wanted, but my doctor actively discouraged it, saying he did not recommend it. This continues to leave me feeling confused.
I don't really remember. I don't think she ever said anything like "I think you should" (I know another MSer who "quit" my doctor because she wouldn't "just tell [her] what to do") but she did press on the point of "I know we can't diagnose you with MS, but this is MS"
I was diagnosed with CIS in 2013 (but I had symptoms many years before that, I was pretty used to them, so my diagnosis was more or less 'by accident').
My MRI 6 months later showed a new lesion, but I was still not put on a DMT.
About 6 months later, I got a viral infection with symptoms, and - strange but true - I got put on a DMT.... There was never really a moment where the diagnosis was changed from CIS to MS. I was just put on a DMT about a year after the diagnosis of CIS, for a reason I still don't really get;)
I wonder if neurologists are not also sometimes guided by patients attitude in their decision to start a DMT? I was so used to the symptoms by the time I got diagnosed in 2013, that I was really open to (or even pushed) the notion that it was a 'one time' thing, that probably would never happen again.
I had my first MS symptom in 2015, pins and needles on my face - the family Doctor recommended a brain CT which came back normal. In the next four years, I had period of pins and needles in my hands but they always went away. I also thought I was a hypochondriac. In 2019, after my entire body was covered in pins and needles and I lost my balance, I presented to hospital. I had an MRI and lumbar puncture. C2 lesion causing trouble. Diagnosed with RRMS and started cladribine straight away. Currently, 2 years of NEDADI.
I presented with CIS (numb left leg) in 2005 but it was put down to a skiing accident I had a few months previous. My torso then went numb in 2009 leading to my diagnosis. As there was 4 years between episodes, I wasn't offered any treatment and was told to go away and come back when i couldn't live with it any longer. I basically ignored any symptoms for the next 10 years as I could 'live with them'. My mobility then started to decline rapidly so went back to a Neurologist in 2018 but no new lesions or activity so no treatment offered. Am now considering HSCT as a last ditch attempt before I buy the wheelchair!!
I thought I was a hypochondriac before I was diagnosed with MS.
This post resonates with me as I was pushing for further investigations when given a CIS diagnosis in 2015 but the neurologist was completely dismissive. I don't recall him even mentioning MS to be honest. It was explained to me as a clinical phenomenon. Was he trying to save me the worry? the NHS budget? or just a poor practitioner? the problem is that for a patient experiencing their first medical issue, CIS doesn't sound too bad. Good news really when most think they have a brain tumour. Also, as access to neurologists usually takes 6 months unless hospitalised, they are placed on a pedestal and generally patients will take what they say as gospel. I now have the opposite approach. I question everything which ticks my current neuro right off. Whats frustrating for me is that i am totally pro treatment. I would of taken the biggest gun available, which is why i am now pursuing HSCT despite being on Ocrelizumab and relatively low EDSS (1). Based on the above, i may be too late (bands present etc). However, does the fact that the treatment enters the brain not give me a fighting chance? Thanks
We don't really know if treatments have to enter the brain to have an effect. This is what we are testing in various clinical trials currently.
I was diagnosed as CIS then asked to watch and wait to see if I relapsed which I did six months later. First treatments Avonex and Copaxone which didn’t work. Went on to Tysabri. However I’d had neuro symptoms for many years before the CIS diagnosis so it never was CIS in my case and I wonder how many people are similar.
A lot. In the past, we used to call this the MS prodrome. More recently we have suggested using the term Missed MS or MIMS (see article below).
Smets. et al. Missed MS or MIMS not prodromal MS: expanding the diagnostic MS spectrum. MSARDs August 23, 2021DOI: https://www.msard-journal.com/article/S2211-0348(21)00490-9/fulltext
Hi Gavin.
Aha.
I had CIS diagnosed 4y ago, with brain/spinal cord lesions and OCBs. Two episodes of sensory symptoms and one period of painful spasms later and my neuro has offered me DMTs. I chose not to have any, preferring to await diagnosis, and he supported me in my decision, so this article is really fascinating. I am awaiting results of my most recent MRI) Thank you.