Hi guys, so long post ahead im sorry in advance!
Im a 23 year old female and my problems started in November 2016, I started with double vision in my right eye, fatigue and then woke up one day and my speech had completely gone. I went to a&e long story short they sent me home. I then went to my GP who was concerned and i was referred to the neuro day case unit and i was admitted as an inpatient. Had an MRI and lumbar puncture over the next few days and my MRI came back ‘abnormal’ i had a lesion on my brain stem and one on my right side(which could have been there years my neuro said) i was then discharged and went home. The symptoms cleared up and about 2 weeks later they came back with a vengeance, for which I was given steroids for this time. This has then cleared up but I am left with extreme dizzy spells where I cant talk or move my limbs, but they pass as quickly as they come, my spinal fluid also came back as positive with Oligoclonal Bands(which is a protein that can be an indication to MS) and I was diagnosed with CIS. I have since returned to work, which is a challenge as i work for the NHS and I can’t do clinical work anymore due to these problems. I have now got the worst night sweats i have ever encountered, but just in my legs haha and intermittent numbness in my right hand and sharp leg pains, for those people who started with a CIS diagnosis, what time period was it before you got your official diagnosis? i know it can vary widely. Im looking into reducing my hours at work as its very overwhelming and I still have ‘weird’ moments, i might need to look into some form of benefit to help me pay for rent etc if i reduce my hours.
Thankyou all for reading if you got this far lol
and thanks in advance for any help or advise you can offer
Hi Saffron, I’m currently diagnosed as CIS following altered sensation in arms/hands and lower legs/feet but mainly overnight. This started last June and has more or less continued. I’m generally symptom free during the day. I’ve 2-3 possible brain lesions and positive LP. I’ve been offered DMT as guessing I’m high risk of clinically definite MS especially given the fact that I had an episode of pins and needles in my lower legs in 1999. My neurologist won’t rule this in or out in terms of diagnosis.
I’ll be having annual MRIs and neurology appointments and will see the MS nurse every 3 months to check how I am on the DMTs. Think the answer to your question is how long is a piece of string. Not everyone goes on to develop MS after CIS though so you might be one of the lucky ones. Have you been offered any DMTs?
ESA Employment Support Allowance could help.
otherwise the dreaded PIP Personal Independence Payment is the other benefit.
get some help with these as everything has become so strict now.
check to see if you have critical illness cover for your mortgage.
You could try to get an appointment with the CAB to discuss your employment rights as well as potential entitlement to benefits. Housing Benefit might help with rent, plus Council Tax Benefit. As Carole said ESA, but that would be after your sick pay from work runs out. If you’re employed by the NHS I would imagine you get 6 months sick leave on full pay then 6 months on half? Unless your contract is different to this. Maybe talk to your occupational health department before you get any worse, perhaps they can do something about your work?
In terms of getting your CIS diagnosis changed to MS, you’ll need to go back to your neurologist for further investigation / another MRI maybe? Some people manage to get access to DMDs even with a diagnosis of CIS. Maybe you could explore this?
The up to date NICE guidelines are that DMDS can be given for CIS if there is a high risk that it will develop into MS. (I don’t know what is used to determine high risk though). The DMDs approved for CIS are first level injectables.
Sue is right, you should be kept under review by neurology with regular MRI scans (every 12 months at minimum I would say) and I would expect these to be done with contrast so that any new damage is picked up easily.
And how long before the 2nd shoe drops and MS is confirmed (if it ever is)? That is the ultimate question with no set answer. I was initially diagnosed as CIS after having a catastrophic relapse with symptoms very like yours (initially they thought I had had a stroke) but this appeared to be mainly because, although I had clearly had MS relapses previously these had been put down to other reasons (being “fat and clumsy”) rather than potentially neurological so there was no verifiable incidents in my medical records. However, after ongoing problems and multiple MRI scans that initial diagnosis changed to RRMS in a matter of 3 months.
The literature does say that the majority of people with CIS go on to full MS but, as a complete non expert, I do wonder how true that is. Many people have a very minor first incident of myelin damage which they just put down as an odd twinge that doesn’t last for long enough for them to go to the GP and it is only much later after more incidents that they put 2 and 2 together. It makes me think that there may be many people out there who have had CIS that didn’t leave any lasting effect and have never developed into MS and they have never known that there was anything wrong.
And given that years ago, a first episode wasn’t given a diagnosis of CIS, or in many cases, any kind of diagnosis at all, there are likely to be very many people who fall into the category of CIS which never became MS. When I had a first demyelinating episode, accompanied by oligoclonal bands, one lesion in the brain and one in the spine (in 1997) I was given no diagnosis at all. I wasn’t even given the results of the MRI and the LP. I only got copies of the reports to the GP years later after several relapses and a diagnosis of MS. In the letter from the neurologist to the GP following my first symptoms and tests, it says quite clearly that no mention of MS should be made “unless she specifically asks”.
Yes; if you do not feel up to it you must reduce your hours. At your age; I am sure you’re not worried at your age but this will reduce your pension entitlement.
Contact Access to Work Get support in work if you have a disability or health condition (Access to Work) - GOV.UK lots of benefits to help you in work; even taxis to and from.
I’m going out of my mind, the time taken for a diagnosis is so long!
My symptoms started last March, one day the left side of my torso was tingling and just felt odd, over the next 6-8 weeks this feeling spread down the rest of the left side of my body, after many visits to the doctor’s, and him deciding that this wasn’t shingles as he’d expected, I got referred to see a neurologist. A MRI showed up inflammation in my spinal cord and 2 small areas in my brain, I had a course of 500mg steriods for 5 days, which slowly seemed to help a little. I had a second MRI done, which showed no change. Over the next few months the feeling in my left foot turned into really bad pins and needles 24 hours a day, my left knee was getting stiffer and feeling like something is weighing it down and restricting from moving, and my torso feels like it’s being crushed yet pumped up at the same time. These symptoms are with me all the time now, apart from when I’m resting in bed. I’m constently tired and want to sleep, my head aches are getting more frequent. I’m currently taking 50mg of Pregabalin 3 times a day.
I’ve had a lumbar puncture done, on Friday a received a letter from my neurologist saying that the results showed that I have abnormal proteins in my spinal fluid, which suggests that there is some active inflammation going on in my nervous system, which could be the early stages of MS. I’ve got to have another MRI done to see if there are any changes from last summer, and then go back to see the neurologist at my next planned appointment in 4 months! I really don’t think I can cope waiting that long, is this normal, do I have MS? All I keep reading is that the sooner you start treatment the better?
Please can anyone offer any advice?
From a truly mad 46 year old mum!
Saffron - it seems a bit soon to be looking at reducing your hours.
I guess you can have some time off on full pay and until the limit of that time is reached I wouldn’t be thinking about reducing hours.
Also your employer is duty-bound to make ‘reasonable adjustments’ which will help you to continue working.
Many people have a flurry of m.s. activity initially and then things settle down.
3 things - never feel apologetic for being unwell, familiarise yourself with your rights. And don’t assume your managers always have your best interests at heart.
Can I just ask are you covered under Equality Act with CIS diagnosis?
Im due to have another MRI around May I think, but no I haven’t been offered anything, im going to see my GP this Friday with my symptoms going into my hand and legs, as the neurologist did mention to get anything checked out that affected my limbs or any worsening etc fingers crossed I can get something sorted! thank you for your reply x
Thank You for your reply, im looking into PIP as we speak, getting my form through in a few weeks, if not ill go to ESA and see what they can offer very very strict guidelines now lol x
I think ill do that thanks! its all so confusing ill have to do some hardcore research haha i think it depends how long you’ve worked for the NHS to be honest, ill query this actually! ive already been to OH and they suggested doing admin work which is fine, but ill have to go to a different department which is mildly terrifying as i tend to have my dizzy spells when im overwhelmed with new information lol im due a rescan in May time and im off to my GP this week so ill ask about anything i can have to help
Thats a very good point thanks for bringing this up, ill look into this as im on the NHS pension scheme!
thanks for the link, ill check it out
I would think so, I went to see my GP last week and she confirmed a CIS diagnosis would be sufficient enough for claiming benefits, so I don’t see why not
Thanks for that. I’ve not had to use it yet but thinking of if I need it for reasonable adjustment for work. I’m generally ok at present and still able to do my job. Just forward planning.
That sounds like a good idea, they should make reasonable adjustments to allow you to continue your work anyway