Clinically isolated syndrome

New diagnosis and before diagnosis
1

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.

X

2

Hi Melanie,

I just wanted to say hello, really, and let you know your post wasn’t unseen/ignored. But I’m sorry I don’t really have any answers.

Logically, it must have happened before, but I do not know anyone - personally, or through these forums - who had such a large single lesion on first presentation. By bumping you back up to the top, it may trigger someone with direct experience to reply.

Alternatively, you may want to try Everyday Living, as not everyone who’s been where you are will necessarily be newly diagnosed or undiagnosed - you will reach a wider spectrum - of mostly diagnosed people - on EL, so more likely to find someone whose case resembles yours.

CIS does not always convert to MS - although I am sure you have already been told that. I do not know what the statistics are for this particular type of presentation, but even if I did, you’re NOT a statistic - you’re you. Statistics do not tell fortunes - there’s no way of telling if an individual will be like the majority, or unlike the majority. Even if the conversion rate is high, it wouldn’t make it inevitable.

It may be from me that you have read of relapses lasting a year, as I’m someone who’s had one like that. You are right not to abandon hope of further improvement, as it remains possible.

It is quite rare for treatment to be offered for CIS (they usually wait to see if it turns into MS). However, in view of how serious yours was, I wonder if treatment has been discussed at all?

If it hasn’t, this might be something you want to raise, rather than playing “wait and see”. You are entitled to a second opinion - whether or not you have issues with your current neurologist. It may be helpful to speak to a neurologist who has a specific interest in tumefactive MS. I know you don’t have that at the moment, but as you know, what you’ve had so far is already rare, and might not be something most neuros have encountered often - or at all. So you might want to ask your GP about a referral to someone specialising in this field.

I’m sorry - I don’t know any names to recommend, but your doctor should be able to find out!

Tina

x

3

Hi Melanie,

i think you are very brave and although I can’t offer any advice I just wanted to send my best wishes.

Tina, your post is blooming lovely and spot on! If I were you Melanie I would definitely have the same concerns and I back up what Tina recommends - campaign for treatment to prevent another one of these super lesions x

i wish you all the best and sending love and hugs x x

stacey

4

Hi Tina and Stacey, thanks for your comments, I appreciate you getting back to me.

My problems are still here 8 months on but I can live with these . It’s the unknown that is worrying for me.

My neuro is the head of the neuro science centre at Salford Royal . She is lovely clearly is the head of her game but I haven’t really asked a lot for fear of the answers…

Ive never been offered meds just have had intravenous steroids and take gabapentin for nerve pain.

ill also post on everyday living as per your suggestion thanks you.

take care

thanks

mel