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Diagnosed with CIS in 2013 but am I having a new episode??

Hi folks,

Back in Feb 13 I had an episode in inflamation in left frontal lobe which caused my bodies RIGHT side to go totally numb and very heavy for 8 weeks in May 13 I was given the diagnosis of Clinically Isolated Syndrome. Which the neuro discribed to me basically as a singular sclerosis, and that I had an increased risk of it now happening again in which case I would be diagnosed with MS.

Since then ive had continuing problems with fatigue and just generally feeling unwell so again last month (May 14) I was given another MRI after a bout of really bad fatigue to see what was going on… typically a few weeks later (31st May) I woke up feeling like id pulled a muscle in my LEFT arm, I thought nothing of it but its now been 11 days, ive tried both rest and exercising it along with a tubi grip and icepacks it still wasnt getting better plus my leg is also very wobbly and my energy has seriously slumped. My arm is shaky, weak and my muscles feel tight and sore (as if ive over done it with exercise if you know what I mean?) plus Im getting sharp pains like being stabbed with pins in my shoulder and spine. Menatlly I feel shattered all the time and very disorientated / ‘out of it’

Ive had a urine test and theres no signs of infection so I contacted my MS case nurse but she said the last MRI was clear so the neuro doesnt see it as urgent! I explained this has come on since the last MRI and they finally agreed to let me go to the clinic next week but ive been made to feel like im just imagining this??!! She even said ‘oh if you change your mind and feel you dont need the appointment please let us know’ ?!?

Sorry but am I going mad?? Or does anyone else think these new problems are not normal???

No don’t think you are going mad or that what you are feeling is normal! Sounds to me like your clinical team are trying to put you off coming (for whatever reason, maybe they’re understaffed), but that is not your problem. Go and get seen, it may be something completely unrelated to the CIS, but it’s best to find out from the professionals. Maybe keep a diary of any new symptoms that happen and record the ongoing ones, might help the neuro. Hope you get it sorted and you can get back to your life.

thanks ssdd

ive contacted the ms team a few times over the past year because of the continued fatigue issues, each time to just be told that it is a side affect of the cis and will gradually dissappear but i know feel like im just being a nusence…maybe its just my fatigue addled brain reading to much into it but surely even if it does get better over the next week I should still go and see him?? because its still could be another episode right?!

I think il try and see my GP tomorrow…at least then if it has faded by the time i see the neuro I have the GP to back me up that I wasnt faking it!

OK

warning, I may have abit of a rant in this post!!

so I saw the neuro yesterday…
Got poked and proded for about half an hour, told him all the problems over the last 2-3 weeks, pain, heavy/numb arm, face and leg, tiredness etc and that my GP told me I should come and see him even if it starts to fade (which is has over the last 3 days)

After all that (plus the 40 minute journey to the hospital and the hour long wait) he tells me its very hard to tell what caused it and that its more likely a shoulder injury?!? A. I know I havnt done anything to my shoulder. B. if it is an ‘injury’ why did it come on suddenly in the middle of the night and C. since when do shoulder injurys cause your leg and face to go numb???

Plus he wants to see me in 6 weeks… and he said…
“Pain isnt usually a main factor in MS episodes” ???
Sorry what??? so myself and all you other people on here in pain must be lying or just imagining the pain then?

Even my GP doesnt understand it…

:frowning:

Im Confused, miserable and been made to feel stupid

Hi there,

I’ve had something going on with my arm since last year, and wondered if this might help you to consider a course of action. Though I have neuropathy for sure, I also have something going on down my left-hand side, where I get bouts of numbness, aching, muscle pains etc., even including my head. Please note that I am undiagnosed in terms of etiology for this last problem.

Last summer I had a lot of pain come on in my shoulder. I did get an x-ray which showed nothing. However, I could feel that this pain came on greater with the rest of the problems down the left-hand side. In addition I have had tremors in my left hand and fasculations in the left arm specifically. I finally got annoyed with my doc and pushed strongly for a neuro appointment. While the first neuro picked up a few things in my peripheral nerves (feet), she didn’t pick up anything in the arm. She sent me to see a specialist anyway for an EMG of my feet etc., who advised me that the arm was more of an articulation problem. Eventually, I went back and had an ultrasound, which did indeed pick up tendonitis in the left shoulder.

The point I wanted to make here concerns the fact that I seem to get inflammation flares, where my left arm as a whole gets worse. I’m convinced that two things are going on here, one being a physical injury and the other an inflammatory effect of whatever other issue is affecting me. While I’m now undertaking physio treatment for the shoulder (almost one year later), which is tending to improve it, when I get a flare the arm goes downhill again.

You might want to get your arm checked in any case, just to rule out any potential problems. This doesn’t mean that you may not have something else going on that is impacting it, but sometimes these things can be multi-faceted.

Take care

Astro x

Thanks astro, looks like its another trip to the docs for me then, see if she can find anything.

There was a physio with the neurologist, she checked my arm and said there was hightened sensitivity and a loss of movement in the left arm… I just wish they would say what it all means instead of being very vague and just telling me to come back again…

lauren x

Lauren, find another neuro. It doesnt sound like you are being taken seriously at all. You dont have to put up with it and it sounds like your GP will support you in finding a better one. Where in the country are you?

I am with humbug, find a new neuro. I am in no mans land at the minute but my journey goes on. I will note sttle until I am convinced that I have been taken seriously and that I have a diagnosis that I can believe in. Hope you find some meaningful answers soon. Lou x

thanks guys, I will ask my GP if she can refer me to someone else or im not sure if she can send me for an MRI rather than having to go through a neuro???

I felt like I was made to feel compleatly stupid and that I was being a paranoid nusence…

Humbug Im in Bridgend, S Wales… the neuro im seeing is in swansea - thats another thing, me and my husband (I dont drive) have to take a day off unpaid every time I have to go see him!
If hes not bothering to do tests now whats the point of seeing me in 6 weeks by which time it will have got better?!

Im really fed up with Drs… when I had my first episode (almost paralysed down right side) I got sent home on 3 occasions from 2 Dr’s and the A&E with the explanation “its just a mystery virus, take paracetamol and rest”
Fortunatly working in a pharmacy has given me some medical knowledge to know that a virus doesnt cause numbness for 8 weeks lol!! so I changed Dr surgery and finnally found a good GP who sent me straight to A&E with a letter demanding I have an MRI…

thanks guys…glad im not going mad :stuck_out_tongue: x

You’re not going mad, there is an explanation for your symptoms. You’re not stupid and you’re not a paranoid nuisance. You know what’s normal for you (I wish more doctors would listen to their patients about what is or is not normal!). And since you have been told you have CIS and are now having new symptoms, then surely the question of whether CIS has become MS has to be high on the list of causes?!

It’s a shame your neuro seems to have trained at the same place my first one did! I echo humbug and LouLou, go back to your GP and ask for a referral elsewhere. There are good neuros out that but it’s a real lottery whether you get one (I got lucky second time around).