Aa
I am looking for peoples opinion of clinically isolated syndrome.
I have posted a thread on the MS society forums and I got the response that I shouldn't class myself as having this. What I can't understand is the definition of CIS is this; "A clinically isolated syndrome (CIS) is an individual's first neurological episode, caused by inflammation or demyelination of nerve tissue. An episode may be monofocal, in which symptoms present at a single site in the central nervous system, or multifocal, in which multiple sites exhibit symptoms." (wikipedia).
Surely as this fits exactly with me then I must have it.
I send a message also to the ms society but I was just sent info on CIS. This wasn't at all helpful as the info was no different to what I have read on numerous web sites.
Does anyone know if anybody with first neurological symptoms caused by swelling or demyelination have CIS or if it is more complicated than this? I sent the ms society another message (5 days ago) asking what I am asking you but I have not had any response. I understand that they can not give people any diagnosis but they could have at least responded with something even if it was an "I don't know.".
Also my neurologist has used the word encephalomyelitis. When I have researched this I can only find info on
myalgic encephalomyelitis (ME) and acute disseminated encephalomyelitis. The latter does sound like me. Could this be what the neurologist ment?
I hope someone can help. x
I have posted a thread on the MS society forums and I got the response that I shouldn't class myself as having this. What I can't understand is the definition of CIS is this; "A clinically isolated syndrome (CIS) is an individual's first neurological episode, caused by inflammation or demyelination of nerve tissue. An episode may be monofocal, in which symptoms present at a single site in the central nervous system, or multifocal, in which multiple sites exhibit symptoms." (wikipedia).
Surely as this fits exactly with me then I must have it.
I send a message also to the ms society but I was just sent info on CIS. This wasn't at all helpful as the info was no different to what I have read on numerous web sites.
Does anyone know if anybody with first neurological symptoms caused by swelling or demyelination have CIS or if it is more complicated than this? I sent the ms society another message (5 days ago) asking what I am asking you but I have not had any response. I understand that they can not give people any diagnosis but they could have at least responded with something even if it was an "I don't know.".
Also my neurologist has used the word encephalomyelitis. When I have researched this I can only find info on
myalgic encephalomyelitis (ME) and acute disseminated encephalomyelitis. The latter does sound like me. Could this be what the neurologist ment?
I hope someone can help. x
to binx and ntbryentonrochard (phew what a mouthful lol).
Well binx go to the top of the class.
Clinically isolated syndrome
A clinically isolated syndrome (CIS) can be defined as the heralding manifestation of MS.
The clinical diagnosis of MS requires identifying two relapses, separated in time and involving different areas of the central nervous system (CNS). With the advent of MRI of the brain and spinal cord, it is now possible to identify people at risk of developing MS as they show a CIS. Multiple studies have now made it possible to better define the risk of “converting” from a CIS to MS. There is evidence that initiating a disease-modifying treatment (DMT) at the CIS stage delays both conversion to MS and onset of the progressive phase.
ntbryentonrochard when I answered your previous post I think I mentioned that lesions can heal and the attack you had could be the only one for a long long time, this is classed as a CIS......
You could go on to develop full blown MS or it could be that you only ever have a CIS.
The reason why your doctor mentioned encephalomyelitis (M.E.) is because now many neurologists are realising that there is a similarity between the two MS and M.E. and some people are being diagnosed with M.E. who then go onto develop MS.
I found research from one specialist who is convinced that M.E. is actually a benign form of MS, we need so much more research on this.
M.E. is now classed as a neurological disorder by the The World Health Organisation......
So I would say that your neurologist for now has confirmed you have had a CIS for now, and is waiting to see if this develops further. Its a case of wait and see really.
I hope this helps.
So no diagnosed of MS yet but yes to CIS which could develop into MS or not......but possibly M.E. as well......
This explains M.E. versus MS very well:
http://www.hfme.org/mevsms.htm
Well binx go to the top of the class.
Clinically isolated syndrome
A clinically isolated syndrome (CIS) can be defined as the heralding manifestation of MS.
The clinical diagnosis of MS requires identifying two relapses, separated in time and involving different areas of the central nervous system (CNS). With the advent of MRI of the brain and spinal cord, it is now possible to identify people at risk of developing MS as they show a CIS. Multiple studies have now made it possible to better define the risk of “converting” from a CIS to MS. There is evidence that initiating a disease-modifying treatment (DMT) at the CIS stage delays both conversion to MS and onset of the progressive phase.
ntbryentonrochard when I answered your previous post I think I mentioned that lesions can heal and the attack you had could be the only one for a long long time, this is classed as a CIS......
You could go on to develop full blown MS or it could be that you only ever have a CIS.
The reason why your doctor mentioned encephalomyelitis (M.E.) is because now many neurologists are realising that there is a similarity between the two MS and M.E. and some people are being diagnosed with M.E. who then go onto develop MS.
I found research from one specialist who is convinced that M.E. is actually a benign form of MS, we need so much more research on this.
M.E. is now classed as a neurological disorder by the The World Health Organisation......
So I would say that your neurologist for now has confirmed you have had a CIS for now, and is waiting to see if this develops further. Its a case of wait and see really.
I hope this helps.
So no diagnosed of MS yet but yes to CIS which could develop into MS or not......but possibly M.E. as well......
This explains M.E. versus MS very well:
http://www.hfme.org/mevsms.htm
hi there,
i could be totally wrong here, but from what i have understood, most docs when diagnosing MS look for a presentation of symptoms and diagnostic criteria that is separated by space and time. if you have just one episode of neuro symptoms, they are likely to classify it as a CIS; however, if new lesions show up with additional symptoms, then MS will more likely appear on their radar.
does this make sense? if i'm way off base, i always appreciate being corrected.
best wishes,
binx
i could be totally wrong here, but from what i have understood, most docs when diagnosing MS look for a presentation of symptoms and diagnostic criteria that is separated by space and time. if you have just one episode of neuro symptoms, they are likely to classify it as a CIS; however, if new lesions show up with additional symptoms, then MS will more likely appear on their radar.
does this make sense? if i'm way off base, i always appreciate being corrected.
best wishes,
binx
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