Clinically isolated syndrome

Hi all, I’m new to this so please bear with me re questions etc.

My problems began after the birth of my child last March. I had a great birth no issues yet felt shocking . Constantly tired and very weak … To pick the baby up I had to lean on a wall. When I stood up I walked side wards like a crab… So bizarre . I knew people would put it down to birth so I conducted my own research and just knew it was Ms related. I even voiced this to my partner, I knew of no one with Ms but knew something was seriously wrong with me. It reached a crescendo in August last year when I became fully paralysed from the neck down I could do nothing but scream . I was hospitalised and an MRI discovered a large mass/lesion measuring 3 inches, hence why they thought I had a brain tumour . Lumbar puncture ensued and the fact that I responded well to steroids suggested inflammation as opposed to a tumour so I was diagnosed with clinically isolated syndrome. If I had another incident such as this one I would have tumefactive Ms. I know of one other lady with this. Does anyone know of anyone with clinically isolated syndrome with a lesion this large? I am still suffering the effects but as someone has recently pointed out this can take about a year. I still have continued pins and needles, my right hand side even my breast and bum are numb and I feel as though I have been permanently attached to a drill and then let go so I feel as though I have a tremor or vibration within me permanently!! I feel the odds are high that I’ll get Ms but I constantly worry that my brain won’t take many more tumour sized ones… I know of only one lady who has 4 but can I die of this if a do get the tumefactive one and I continue to get lesions. .? Sorry for the 20 questions I feel I have no where to turn as the size of the lesion was so rare and large, hence causing my paralysis.

Thanks in in advance and sorry for rambling.



hi melanie

sorry to hear of ms spoiling the birth of your baby. it has no respect this damn disease!

are you under a specialist? has he/she suggested any treatment (meds) for your symptoms?

i was prescribed thiamine tablets for pins and needles before my diagnosis.

thiamine is one of the B vits and it worked although they came back eventually.

ask your gp for a full range of blood tests, including B12 and D3.

symptom management won’t give you answers but will make things less unpleasant.

your questions specifically about tumefactive ms should be put to your consultant.

try not to get too worked up about it all (easier said than done, i know) because nothing good comes of it.

try to enjoy your baby.

you can give your baby love which is what they want and need.

you can have loads of cuddles even on the days when you can’t be bothered to get dressed.

be strong sweetheart

carole x

Some neuros are now prescribing dmds for cis, have a look at the barts ms blog. do your reasearch and go and see a more agressive team in dealing with ms. I drive 4 hrs to see a different neuro you just have to get your gp to refer you. If you are not happy with the information you have been given or the lack of it you need to assertive and get the care you need. Some people with cis never have another episode but due to the nature of your lesion if I was you I would be looking for more information. Hope this helps xxx

Thank you both for the above information . This is greatly appreciated. I will have a look at the blog Zoe , thank you .