kateybash 08/06/17
Last reply 11 months ago
CIS Diagnosis. Any advice?

Hi folks,
Well saw my neurologist yesterday who diagnosed CIS transverse mylitis. I am grateful to at least have some sort of diagnosis but feel totally overwhelmed and very low today…never slept at all last night. She has changed my drugs from pregabolin to duloxetine but no mention of a DMD. I never thought to ask yesterday. Just really looking for advice, I have ongoing symptoms of burning, very painful legs, electric shock like sensations intermittently all over my body and dizzyness.
Thanks everybody.
Kate x

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Anonymous
11 months ago

Hey! @kateybash

Sorry to hear you are feeling rubbish. At least like you say you got an answer. I only know one person that had a Transverse Mylitis but he went on to develop MS, but I don’t know if that is common or unusual. I have since noticed posters at the hospital advertising a Transverse Mylitis support group organisation – maybe they could give you advice about the DMD and maybe they could give you support to push your neurologist to give you treatment if there is a high probability of developing MS.

I hope you feel better and get the treatment you need.

Avril x


stumbler
11 months ago

@kateybash , Transverse Myelitis (TM) or CIS is another way of saying that you have “Singular Sclerosis”, as you have only had one episode. It may, or may not, progress to me, dependent on whether you have another episode.

The view of this condition (TM/CIS) is now changing and some proactive Neuros will prescribe a DMT, to avoid progression to MS.

Have a read through this earlier post, which has some good links :-

Is CIS a type of MS?


merfield
11 months ago

Hi @kateybash, sorry to hear you are so stressed ….waiting a diagnosis is grim but yours is not too bad. As @stumbler says, a DMT might be a good idea. And as @avrilt says, I also know someone who had TM who now has MS quite some years later, but she is far more mobile than I am and has just returned from a successful holiday in Puglia in Italy. So don’t let it get to you…..and sleep well tonight😌Xx


californiadreamin
11 months ago

Do you have any details to what your MRI showed? My wife technically has cis but the MRI was enough to diagnose as MS based on evidence of activity in both time and space.

The best case is this never converts to ms officially and I believe following a lifestyle modification like oms (overcomingms.org) will help improve those odds quite a bit.


smurf69
11 months ago

@kateybash I’ve got a diagnosis of CIS and was also offered and accepted a DMD – I’m on Rebif. Have you been alllocated a MS nurse? If not, can you google who your local MS nurse is so you can contact him/her to ask about treatment options? What’s the plan for follow up? I see my MS nurse every 3 months and annual MRI with neurologist review.


kateybash
11 months ago

@Avril, @ stumbler, @Merfiels,@Californiadreamin and @smurf69,
I cannot tell you all how amazing you all are replying to me with such positivity. I really appreciate your experiences and input. Stumbler I have read the last post and it was really informative. My neurologist has changed all my drugs so I am thinking that she is hoping this will help symptoms. I got a call from the MRI dept today looking for availability in the next few weeks so that has been amazing. My neuro advised that if no new lesions I would have a yearly MRI, she also mentioned doing the next with contrast. To be honest I spoke to her for over an hour yesterday and she was really great. Smurf69, I am so grateful to you for giving me so much advice since you are living with this diagnosis too. An MS nurse has not been discussed or DMD’s. Not too sure where to go with it? Maybe wait until I have had this next MRI and results as that might make a difference or phone the neuro tomorrow to discuss DMD’s and MS nurse? She was wonderful and I don’t want to appear pushy….however, it is my health at the end of the day. Any suggestions?
Thanks a million again. Such a supportive group of MSERS.
Thanks
Kate


smurf69
11 months ago

@kateybash is your MRI scan booked? Think I’d call neurologist’s secretary and get MS nurse’s contact details. I’ve found mine has been a link to my neurologist and I contact her with any queries via email. With regard to DMDs have a look at the MS Trust Decision Aid as that tells you what you’re eligible for. It’s basically Copaxone, Rebif, avonex, betaferon and extavia. Thinking is that it can delay progression to MS. Have sent you a friend request if you want to talk. Don’t have all the answers but know what you’re going through.


smurf69
11 months ago

Also found this to search for MS nurse yourself
https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

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