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Awaiting a diagnosis - advice would be really appreciated x

Hi,

I hope this is ok, really sorry for long post and spelling (takes a while with one hand!)

A bit of background…3 weeks ago i fell in the night whilst going for water, i passed out and had a very bad fall cutting open my face on the kitchen counter and falling onto the broken mug cutting my foot open. went to hospital had ct scans and all clear, had stitches and sent home. over the next few days developed numbness in my right side, beginning on my leg and foot then arm torso and hand. after several visits to a&e i was sent home to have a hot bath (great advice).

a few days later it got so bad i couldn’t even change my 14 moths olds nappy let alone bathe him so i went to a private dr who straight away sent me to a neurologist. he sent me for mri that same day, it showed up lesions in my brain and one on my spine going from c2 to c4. i had the mri over 2 days at it started that evening, the scanners called the dr after first lot saying they found some lesions in the brain and that they should use the dye the next day. on the report the conclusion said they believed the lesions on the brain to be non-monophasic (is this old and new?)

anyway, went to hospital for 3 days to have LP and steroid drip for 3 days. My main worry was caring for my baby which is still hard and heartbreaking.

i was discharged a week ago now, thankfully feeling back in leg and foot but not fully in arm, hand and torso. also still have an incredible itch on my right side chest and occasional pain under ribs. the neurologist said he can’t say whether its ADEM (very rare?) a one off (is this common?) or MS. He said the LP will take another few weeks.

Im trying to keep calm etc and focusing on my baby etc but I cant help but get engrossed in finding out if i do or don’t have MS. The neurologist was being very sit on the fence but I wondered with lesions on the brain and a clear one of neck spine (and scanner reporting they seem old and new on brain) what your experiences are and if you think MS likely (and if it is I think im ok with that just want to get on a good programme etc). Also, how likely you think it is i’ll get feeling back as was in arm and hand?

Im sorry for long post and am aware no one has all the answers Im just desperate to get some advice from people who are going through possibly the same thing.

wishing you all a restful night

xxx

Hello, it’s my first time here on the forum after 18 months of a ‘possible’ me diagnosis, and I am feeling as worried and confused as you at the moment and feel for you! My background : after a really stressful year with nine and my boyfriend’s work situations, as well as moving house, I started getting pins and needles in 1 foot and numbness in my leg, and over the next couple of days it moved to my other leg and up to my trunk. I called an ambulance when I started to lose feeling down below, and after mri scan revealed lesions on my brain and spinal chord they said possible ms due to me saying I had numbness in the same leg the year before - which which I thought was related to a bad back I’ve had for years. They said it could also be an isolated clinical event, and sent me away to ‘forget about it and live my life’(!) - which I have tried to do but last week after another extremely stressful time in my life I have been having similar symptoms - my nurse said to wait and see if it gets worse as it may just be old symptoms flaring up and they probably wouldn’t give me steroids for it - and they still cannot say for sure if it is ms but it seems likely! Not knowing is horrible as sometimes I tell myself I haven’t got it, but I feel in myself I must have if I’m getting symptoms again, but am also confused as both things have happened after periods of high stress. anyway sorry for rambling on - what I wanted to say was that I know how you feel driving yourself crazy wanting to know if you have ms or not, but we can only try and take it easy, keep calm and give our bodies the best chance to recover :slight_smile: stay well, and I hope you get some answers and recover more from the recent episode soon :slight_smile: xx

Allo hun.

Oh dear, you really could do without all this to-ing and fro-ing. Of course you want to be able to care for your little one safely and with as much strength as poss. I can imagine the little person being all over the place, with learning to walk, or very close to that stage, eh? I call that stage eyes in your backside time.

Our children and grandchildren are all way past that stage, but I remember it well. Plus as we have just got a new pup, we have to be constantly on guard, as she thinks everything is edible, or at least worth a lick!

So, about your condition. The thing with sensory neurological problems, is so many conditions mimic MS…as they did in my case and it took many years to decide what I dont have, rather than what I do have!

Do you have family and friends who could help you with the baby? I hope you do, as no matter what condition the medics decide you have, you will need to pace your activities and get good rest periods when you can.

Lets us know how you go on, yeh?

Love Granny Pollxx

hi there

So sorry to hear that this is all happening to you. Its awful especially when you have such a young baby to care for.

I am awaiting news for a mri i had last week (to see if my symptoms which are like ms actually are) the not knowing and the waiting is driving me mad too lol.

The only thing i can say for certain is the whole process does appear to take such a long time, its not just a case of saying what it is but also ruling what its not … i think in your case the consultant is right to query whether it is ADEM in light of the fact you passed out, had you been poorly prior to this? If you are still being cared for under private health care i would imagine you will gets answers/tests done much faster than nhs

Numbness is one of the many symptoms of ms so it is possible that its ms. i started experiencing numbness in my chin/lip in December and its still numb to this day as far as i know there is no answer as to how long the numbness will last … (i hope im wrong)

This is a wonderful site and im sure people will offer you lots of support whatever the outcome, try not to become (like me) too focussed on researching ms/like conditions, as useful as they can be in reality only a neurologist can give you the answer which you desperately need.

I have twin 5 year old boys and i am also experiencing weakness in my arms and legs so can relate to how upsetting and frustrating it is (especially not knowing what the cause of all of this is) Try to stay positive, i really hope and pray that you get answers quickly … keep us posted :slight_smile:

best wishes

Vanessa x

Thank you so much for your comment Fairy Lucy… I am so sorry for you and what you are going through, your words are reassuring . I hope you too find some answers soon and that the episode you are going through gets better real soon. I agree, stress really does affect our bodies… when i get upset now my arm and hand starts having a mind of its own and wont stop moving!

xxx

Thank you Granny Poll! Yes you are right, lots of evergy required with my little boy, he isnt walking yet but sure trying to! I luckily have my parents nearby who have been amazing and have certainly been an intense training few weeks for them!

Thank you for your advice, I hope you are well

xxx

Wow Vanessa you certainly have your hands full with twin boys! I find it so hard with just my one little boy and am sure you are an amazing mummy. Thank you for your words/ advice…I really hope you get answers soon too.

Yes, it can be amazingly fast privately and am extremely lucky to have that as I know how awfully slow the NHS can be. I am told that the lumbar results just take time and even then with the esults there may be now yes/no. My pondering with ADEM is that i see its SO rare and much more common in children but cannot rule anything out. I must say the Steroids have done a big job in helping my symptoms, i now have feeling back in my leg and foot, its just my hand and arm that are behaving oddly. I also have this odd vibrating in my bottom which ive read is normal!

I am so glad I found this site and hope to be of support to other in the future as you lguys have been to me.

With love to you all

xxx

Hi just an update…

still no diagnosis but my lumbar results tested positive for oligoclonal bands. Specalist has ruled out most things and has said its either CIS or MS. He avoids answering most of my questions but I wondered does testing positive make MS more likely in the future?

Still recovering and although leg and foot good my arm and hand still has no sensation but I can look after my baby so that’s great! I know this will take time as well as my dizziness etc.

if anyone has any advise in the oligoclonal bands being positive that would be great. Oh and I have a lesion on my spine and a few on brain.

Thanks xxx