Hello All,
I am new to this forum, I live in London and am a single parent of two adult children.
I had a CIS in Sep last year and was put on a steroids for six days which helped with the symptoms, loss of feeling and control of my left side.
My last scan was in Nov 23 which has finally been reported and details that I have multiple T2 hyper intense white matter lesions. They had done a scan in October after my attack and there was no change.
I read that the chances of this developing into MS are between 60 and 80% and I have discussed having a LP with my consultant but am not sure if I should go this route.
I do lose my balance daily, the left side of my body is weaker and I do experience a lot of fatigue. My consultant said this is all due to the damage that has been done.
I would welcome this forums experience and thoughts on this. I do feel getting a LP will give me some answers and allow me to plan if it is MS.
Thank you all.
M
I had one to confirm a dx that was already more-or-less certain, and I’m glad I did. Best to be sure, particularly if you are wanting to start disease-modifying drugs at the first opportunity as I was (and maybe you are too).
A high proportion of CIS go on to ‘develop into MS’ but actually it was already MS in the first place it does not transform if that makes sense. Some people have a genuinely isolated issue due to viruses etc or cause never really known but it doesn’t hit again in the same area or cause multiple lesions.
The question is whether it is autoimmune demyelinating MS underlying disease process causing these symptoms and scan findings or not. I assume MRI brain is completely clear if they have called it a clinically isolated syndrome.
Sounds like you may have some of the broader symptoms eg fatigue, loss of balance and function but it can also be very fatiguing carrying around a limb which does not function well.
I think to be sure its CIS a lumbar puncture needs to be normal- did they offer this to you when you were admitted back in September? If you have ongoing symptoms a year later and ongoing scan changes with multiple lesions this is a bit confusing. If multiple lesions in different areas and of different ages that’s part of the MS diagnosis criteria…
I’d say go ahead with the lumbar puncture to look for the oligoclonal bands. Early diagnosis means early DMT like Alison said. I have a lesion spanning the exact same area since July and a lot of ongoing problems despite starting a DMT but hope it slows down the chance of more future lesions and greater disability.
My key understanding to the disease modifying medication is it cannot undue disability caused by pre-existing lesions but it can stop them from being re-attacked in the same place over time and also slow down new ones. Without this, if it is Multiple Sclerosis, it is not being controlled.
I think of my immune system attacking it like little myelin mice nibbling on cheese (cheese being spinal cord covering) if we can slow down their nibbling it makes sense that when we are 60 or 70 there’ll be more cheese left ie more spinal cord/brain and less disability.
https://www.mssociety.org.uk/about-ms/types-of-ms/clinically-isolated-syndrome-cis#:~:text=The%20doctor%20will%20test%20your,your%20brain%20or%20spinal%20cord.
Hope this helps, best of luck
Hello,
Thank you so much, I am so glad I posted on this forum as have been stewing over this for months.
They did offer a LP but on my last appointment, my consultant asked what my reasons for wanting this were. She said do I want to carry the label of MS and take drugs for the rest of my life which I though was odd.
There are lesions in ny brain that have shown up on both scans but there has been no change in the size or number.
The report does clearly state demyelination.
My question is why is that that when I am over tired or stressed/emotional my symptoms come on. My consultant said it was because of the damage done to the brain previously but I am not convinced with that response.
Thank you once again, I will go ahead an book the LP.
Manisha
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I find that stress, increased body temperature, fatigue, sickness etc all make underlying and background MS symptoms temporarily worse. I think that’s fairly common.
Your consultant’s approach to dx (or not) reminds me of the days before DMDs when there really was no point knowing because there was so little you could do about it. It’s different world now. But of course I do not know anything about what is in your consultant’s mind or about you of your situation, so don’t set to much store by my amateur personal impressions.
I think last year when I came out of hospital I was in denial and just wanted to get on with my life, deliberately avoiding looking online and joining forums.
I am so glad I posted yesterday and the messages I have had have been so insightful and valuable.
@Ridethewaves the cause of my first attack seems to be demyelination, my MRI report stated there are multiple T2 hyperintense white matter lesions in periventricular/juxtacortical/callosal locations suggestive of demyelination.
I will be contacting the hospital and booking a LP.
Thank you again @alison100 and @Ridethewaves.
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Hiya,it’s a hard one to call, I like you had a cis diagnosis Over ten years ago. Had regular MRI for a few years… no change.
My balance was never the same after that but I carried on. I think deep down I knew I had MS. Then I had my big relapse, I couldn’t walk,which scared the hell out of me but eventually it came back albeit my left side has remained numb. Now on vumerity twice daily. I’ve actually a MRI tonight hospital phoned me on Wednesday,which was quite weird. Anyway looking back would have I liked my ms diagnosis ten years earlier or just carried on with my life not really worrying about it or taking meds. I honestly don’t know. I hope your lumby puncture goes well
Thank you @Rocenante, I have asked myself what will I get by finding out as may not have another attack for a while but I think if it is MS, I would rather take the drugs and delay any potential further attacks.
Hope your MRI was manageable and you recover from this relapse.
Hi @ManishaD,
I had optic neuritis 5 months ago and still have no sight in my right eye, MRI showed multiple lesions. I have severe tinnitus in one ear, constant numbness in my fingers, tremors that come and go in my leg and arm and also have pretty bad vertigo/fainting episodes.
I was sent for a lumbar puncture 3 weeks ago and the results were clear. Ive now been told to put the thoughts of MS to the side and get on with my life so Im back at work and doing just that (as best I can).
I suppose Im saying don’t put all your hope into LP results as Ive realised when its clear the neurologist doesnt really want to hear about MS.
Im adjusting to my new life of partial sight and weird symptoms and trying now to put the whole nightmare behind me.
Ive been told my follow up appointment with the Neurologist wont be until next year and its hard to process everything thats happened so please prepare yourself in case that LP result is clear.
All the very best of luck,
Laura
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Goodness, that’s a difficult place that you find yourself, and I’m sorry for it. In your shoes I’m sure I would be feeling completely at sea.
Hi @alison100,
Yes it’s definitely very hard to try ro live my life and work professionally while adjusting to this new normal, but it seems I’ve hit a dead end with investigations and have no other option.
One day at a time is my new motto!
Take care,
Laura
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Hi @Lazza1977,
I am so sorry you have been left without a diagnosis and must feel abandoned. I just read another post from someone who has had the same, has symptoms but LP clear.
I can’t imagine how difficult it is for you to continue to work with all those symptoms. I pray they improve for you and thank you for responding to my message.
God bless.
Manisha
Just a note to say my LP didn’t confirm my MS diagnosis although I had multiple brain and c spine lesions with demylination.
My Neurologist was convinced I had MS.
It took 3 years of investigations and finding a new lesion to get my formal diagnosis last year.
Take care and I do hope you get some help and answers soon.
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@Lazza1977 @alison100 @Rocenante @Ridethewaves @ManishaD . All a bit weird or a reflection of differing practices. My diagnosis was around 18 years ago and based on a singe MRI following optic neuritis, along with a bit of clinical history. No mention at all of a Lumbar.
To be fair , I had experienced some facial numbness and tingling the year before and went to the GP for that. After a CT scan didn’t detect anything obvious the GP said OK let’s keep an eye on that and mentioned MS as a possibility ( or she asked what I thought it might be and I said MS- something my Aunt was living with ) . No one has ever mentioned a Lumbar
Hi @Hank_Dogs sorry for the delay in my response and thank you for your comment. I hope your symptoms are manageable. I guess they were not offering LP then.
Hello all,
So I finally got a LP end of November and results came through late last week, quite a wait ! MS has been confirmed and now waiting for nurse to call to advise on drug options as well as date for another MRI.
Feel better now I know and guess I just need to think about next steps.
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Never nice news to get, but if that the state of things, one might as well know. Thank you for the update.
It’s a strange place you find yourself in now - everything is exactly the same as before and at the same time everything feels different!
Please look after yourself.
Thank you @alison100 you have captured exactly what I am feeling and have not been able to put into words. I have felt so out of sorts since the phone call and really not sure what I should be doing, thinking or feeling.
Am so glad I have posted on this forum, everyone’s messages and support has been really helpful.
I hope you are keeping well
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