Probable diagnosis & myoclonus

New diagnosis and before diagnosis
1

Hi everyone, I joined the forum a few months back but haven’t really been active so far as I feel as if I’m in limbo. Last Nov I had 3 days of severe and constant myoclonic jerks and was referred to neuro by the GP. MRI in March showed demyelinating lesions on brain and a lower cervical cord lesion so I was referred for a lumbar puncture. This showed oligoclonal bands in the CSF so had another MRI with contrast at beginning of September.

This whole process has been so stressful, my lumbar puncture referral was lost 3 times, my neuro has left but referred me for follow up after latest MRI by MS specialist neuro and somehow I got lost so have found out the results of latest MRI through receiving a copy of a letter between two neurologists giving results and saying I wasn’t on system for follow-up and that I should be seen asap. Apparently latest MRI shows two new lesions, one of which is enhancing. The last neuro I said seemed to say that if more lesions showed up he would be diagnosing MS.

Since about March I now have myoclonic jerks on a daily basis. Some days are better than others as they vary in violence and frequency, seeming to be worse if tired or stressed. This seems to be a slightly unusual symptom and I am also now 51 years of age so am older than most for a diagnosis.

I’m due to finally see MS specialist neuro on 19 Dec and really just need to have diagnosis! I have a severely disabled daughter who is completely dependent for all her care needs and my main concern is for her and how this may affect my ability to care for her.

From people’s experience, does this sound like MS to you and does it sound as if there’s enough evidence to make diagnosis?

Thank you.

2

hi snuzz

it does sound like ms but i can’t make the diagnosis.

i know several people who have been diagnosed at 50 plus.

i was diagnosed myself the week before my 50th.

as for caring for your daughter, a multi-agency care plan needs to be made.

your ms nurse should be able to help with this.

prioritise your own health and well being because you are no use to your daughter if you are ill.

i say this a lot but avoid getting over stressed.

mindfulness meditation is a big help for this.

good luck

carole x

3

Thanks Carol. My daughter has CHC funding already so I already employ PAS part of the time, just don’t want to accept that I may need to take a step back in her care in the future! However at the moment my symptoms aren’t too bad so it’s manageable. As you say, I’m learning to accept I need to minimise stress, get rest etc. The tip about mindfulness is a good one and something I will explore.

I’m used to fighting and being strong for my daughter, just need to learn to apply that for myself now. I’m sure you understand - I just want the diagnosis now, then I can make a plan of action once I know what I’m dealing with!

Snuzz x

4

hi snuzz

great that there is already some funding in place for your daughter.

mindfulness is fab.

just get it on your i-pod or mp3 and you’re off.

i went on a course at trafford ms therapy centre.

they have such a lot on offer.

find out where your nearest one is.

you sound like a strong person and you love your daughter to bits.

best of luck to you both

carole x