I am sure you all have felt like this and its driving me loopy ! since a total shock of a cis diagnosis in 2015 i am left with not a clue what to do if i get any type of blip, what is related and what isn’t ? i have an allocated ms nurse who is wonderful but what is acceptable to ring her with and what is over the top ? what should i see my gp with instead ? i worry every thing i have can be linked to a flare but it could also be something totally different and something i would before this just have put down to a pulled muscle or stress. Am i paranoid ? i actually think i am ! feel better already after just typing this
No not paranoid,
It can be blinkin’ scary not knowing stuff and whether to assume it is MS related or not. The longer you have had the condition the more experienced you get at judging when to be worried or not. I have had this for 26 years now and I still occasionally get it wrong and panic! You will become the best judge. For me the person I can turn to for non judgmental help or advice is my MS nurse. I email her so that she can respond in her own timescale. If I think it is urgent I will leave her a voicemail, or call my GP or try to get hold of the neurologist via his secretary.
Being scared or worried is OK it is all new and weird stuff for all of us initially.
I have to admit, I don’t really get this diagnosis of CIS.
If it’s clinically isolated, how do you have a ‘flare’, a ‘blip’, something else that (to me), resembles a relapse. Which would mean that it’s not clinically isolated.
I suggest not just calling your MS nurse, but asking for an appointment at which you get some clarification from her/him about what constitutes a blip that you should connect to your CIS diagnosis (thus possibly worth bothering the nurse about), what might prompt an appointment with a neurologist, and what could just be something that you can live through.
But of course Mick is right, regardless of the conversations you have, the experience you gain after years (20 in my case), there will always be things that make us scratch our heads and say ‘duh’!
Here comes a clumsy analogy…
i think CIS is like a broken leg. Something significant happens and a bone breaks. Time passes. Normalcy resumes. But because a buggeration occurred once, it doesn’t mean that any subsequent pain is indicative of the exact same circumstances.
To sue1, i think it is entirely a good thing that despite your diagnosis, you are aware that other things can independently still arise. So often people attribute this, that or whatever to being a consequence of having MS or as a side effect of the DMD they are taking to help combat it; whilst conveniently forgetting the ten pints and blue meat kebab they consumed the night before…
As you know, everyone’s MS is different. But it might be fair to say, that everyone endures their own tailor-made set of symptoms which can come and go, strengthen and fade, just like the tides, the seasons, a fiddler’s elbow.
Until you are confident in identifying your own set of challenges, you may wish to simply record the onset of something ‘not quite right’ and keep a quiet eye on it. If things increase in severity or spread etc over the course of two or three days, i would go to the nearest A&E department of a hospital that has a neurology department.
GPs can be useful for acquiring preliminary diagnosis and determining the next step. But if you have already been stamped by the CIS / MS badge, you might reasonably side step this part of the process and go directly where MRIs etc are available to count out things like strokes or other cardiovascular nasties. They can also give you a solid dose of the steroids if indeed you are found to be having a relapse.
If this is not possible, then certainly get on to your MS nurse. Remember the squeaky wheel gets the grease!
Good luck! Be optimistic and keep that rational head focused
Wow you nailed it ! i feel everytime i am having anything its presumed a flair, i don’t know my own body enough it seems to dictate what is and what isn’t, i just worry something else will get missed along the way, yes i feel awful and it could be anything, i have had 3 mri 1 positive 2 negative, a negative lp so i am leaning towards something else going on either as well as or instead of, i hate to feel like i do and am now thinking depression has set in, yes i am confused lol