Not sure if I have MS or not?

Hi,

I am new to the website and really worried and in limbo about what’s to come. I was admitted to hospital as both my legs suddenly became numb. Such a scary and worrying time. I spent 8 days in hospital having MRI scans which showed high levels of inflammation of the spine. Brain scan was normal but now waiting lumbar puncture results back from Addenbrooke Hospital in Cambridge. Doctor in the hospital mentioned MS as a possibility or it may be a “one off” episode. Since being discharged from hospital 2 weeks ago I still have weakness in the legs but now new symptoms too. Arms, fingers and facial tingling, extreme tiredness, forgetfulness, and extremely low in mood. Not sure if it’s anxiety or new symptoms really. Not sure if I have MS or not and the waiting is really getting to me. It’s been 2 1/2 weeks since hospital discharge! Is anyone in the same situation as me or can relate to anything? Advice would be appreciated x

Hi Bunters, welcome to the forum.

Sounds like you’re having a bit of a time of it. It’s scary stuff being admitted to hospital, however, the investigations are well under way, and you’re home again, so hang in there.

I remember being in limbo, and being in denial, and the whole uncertainty of the time. It’s horrid, you want answers and you want them quick, and you fear that when you get the answers - you may not like them. Unfortunately, an MS diagnosis is very rarely quick. There are a lot of tests to be done, and sometimes repeated. I’m glad you understand you may not have MS, clearly the doctors aren’t sure - so they’re being honest with you. Don’t try to jump ahead, and don’t google every little symptom you get (difficult, I know) for as you say - they could be caused by anxiety. You’re in limbo - of course you’re anxious. If you’ve read some of the other posts on the forum, you’ll know it stresses everyone and that you certainly aren’t alone.

Keep hanging in there,

Ben

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Hi Ben. Thanks for your reply. It’s comforting to know (not in a horrible way of course) that there are people who have similar experiences and can relate. One of the reasons I joined the MS society is because although friends and family sympathise with you they don’t fully know what you’re going through as they can’t feel what you feel and trying to explain to them is difficult. Being a mother of 6 I’m desperately trying to play my role but it’s so hard when you feel ill all the time. Especially my 3 year old that wants to go to the park etc, when all I want to do is go to bed! I’ll keep updating to let you know how I’m getting on. Thankyou so much for the reply and for the advice

Gosh Bunters - mother of six, including a three year old - you have my respect.

I’m sure there are other young mothers on the forum who could empathise with your situation, but I don’t think they find much time to post, as I’m sure you’ll appreciate.

Here’s hoping you get some answers soon.

Ben

Hi Bunters,

I know exactly how you feel but please try not to worry too much as I promise you - from my research MS is really not always the devastating disease that people think it is. I am 35 with two beautiful children and like you, all of a sudden -I had a one off episode which landed me in hospital this March. Previous to this, I was for as a flea with no health concerns at all. Other than the exhaustion that comes with rearing two small children!!!

So one morning I just woke up and my legs didn’t work properly… I was admitted to hospital and diagnosed with something called transverse myelitis. Because I had a lesion in my brain as well as a few on my spine, they told me I had an 80% chance of developing MS. It hit me very badly but since then I have distanced myself from it all because after steroid treatment my legs fortunately returned to normal.

I have since battled to get on treatment ASAP and will luckily be starting a new drug called pledigry very soon. Not all neurologists will want to start people with a one off episode on treatment / otherwise known as clinically isolated syndrome - but so many studies have shown that treating it early will reduce relapses by almost 40%!! If you don’t treat it early then damage may be caused that is irreversible. So we are really both very lucky that we can fight to get treatment as soon as possible!!

there is so much research going into MS right now - if there was ever a time to get diagnosed - and you might not even have it!! / this is the time!! So many experts are saying that right now!!

So pour your glass of wine and love your children - if it turns out you do have MS - it is really not the end of the world at all - just the start of a new journey and when your children are old enough to understand what you have gone through - they will be prouder than words can say

kxx

Oops sorry!! Sorry about the children references - thought you said that you had some but from reading back your post you don’t - ignore me! X x x

Sorry Bunters!! Just wanted to say one last thing. It’s so positive that your brain scan was normal as a one off episode of MS related symptoms is much more likely to convert to MS if coupled with abnormal brain scan.

So this may well just be a one off episode for you! Its far more common than you think

when should your lumbar puncture results be back?

kx

Hi everyone, in the last month lots of strange things have been happening random numb patches right side forehead,right side of heal,patch on top of right foot and also patch on side of lower leg all of which are still numb,bad pins and needles down whole of left side, I’m having episodes of vertigo my mind seems foggy and I’m muddling some words up.i was sent to a&e twice last week and they done a ct scan that thankfully was clear,the doctors have referd me for an mri scan and told me to think about MS a lot is happening, and I’m fearing what will happen next,and will things go back to normal.the fatigue has made me house bound unable to do daily chores can MS come on this quick like this??

Hello I am waiting for diagnosis and MRI scan , but I haven’t been able to empty my bladder and lost a kidney because of it. I have been having episodes of pain, tingling and slurring words , GP thought it was B12 levels but that has now been ruled out. Any advice would be gratefully received

Undiagnosed yet , but used to have episodes with about 6 months between them but now I am in constant pain. Has it progressed ???