just wanting to get this off my chest

New diagnosis and before diagnosis
1

hello again!

i posted a bit back with ‘my experience of symptoms’ and im writing again because today im feeling pretty down and wanna use this space to just get some of this off my chest knowing alot of you will understand in a way my friends and family wont.

I havent been diagnosed MS. I started with symptoms 24th november with tingley/numb/pins n needles/shakey vibrating feeling to my left side of body (not face or neck) meaning i wasnt able to walk. i was spaced out and having panic attacks too. My left side of body was hyper sensitive so something small like something lightly touching my left leg would send me into a shaking fit and then a panic attack. I went to hospital where i had tests and it came back that a patch of inflamation was found at the top of my spine, that my anti bodys had attacked and damaged my nerves. I was put on a steriod drip and sent home.

Since being home my symptoms are i still have a tingley left hand, a tingley left leg and my rib cage/chest on the left side feels numb. I can walk normally for ten minutes but after that i struggle.

My symptoms are now effecting my right leg almost as much as my left. constant pins and needles/tingley feeling in my right foot and when i walk both legs are very tingley and half numb. It spreads to inbetween my legs then up my stomach and chest.

I am just left feeling so confussed. Am I still under attack from my anti bodies? Is this a new attack on my right side? It has been constant tingleing since november but since being home from hospital it has spread to my right side.

Should i go to my doctor? Is there any help for what im feeling? I have no idea what to do to help myself, im reluctant to ring my doctor as I know she knows nothing about this, but I feel I want to see a neurologist. my MRI scan only showed head and neck, could it be i have other damage futher down on my spine?

Each day I have woke up and felt so sad and dissapointed to feel that my left arm is still numb and all of my body apart from my neck, head and right arm is tingleing/vibrating still. When i move my head a certain way i get a weird electric shock type tingle thing from the bottom of my spine to the top. Its driving me crazy! As a single parent without a car i walked everywhere and was so independant and quite busy. Now all I do is walk my son to school and back and lie in bed hoping it will go away.

Is it time i maybe accept it isn’t going away or is there still a chance it might?

Im emotional today after not sleeping well for the last couple of weeks and really wanted to just write here what i was thinking. I know that nobody can really give me the answers or the cure but writting here will help at the moment.

p.s. the first lumberpuncture i had sent shooting pain and a twichy feeling down my left leg and felt really awfull, i went real hot and almost passed out. the second one didnt feel so bad. could it be my nerves were damaged from the lumberpuncture the first time and this is what im feeling now? Alot of what i feel seems to be centred around the bottom of my spine.

hufffffffff i feel abit better now after all that…thanks! anything you might have, advice, experiences, is welcome. Todays one of those rubbish days for me

amy -x-

2

Hi, yes, a lot going on there. You really ought to see your GP and ask for a referral to see a neurologist. Im pretty sure thats what the GP would do anyway.

Your symptoms do sound MS like…so do mine, but they keep changing my diagnosis from HSP to MS and back again!

he panic attacks are a result of having these weird and frightening symptoms. Perhaps your GP will advise a mild sedative, to take the edge off.

Who ordered the lumber punctures and MRI? These are usually ordered by neuros.

Do make that GP appointment, eh?

luv Pollx

3

I agree with Poll - you should see your GP and ask for a new referral to neurology. The new symptoms are more likely to be a sign of new attack rather than a development of the existing problem or a result of the lumbar puncture. You should also ask your GP for help with your symptoms - a neuropathic painkiller could make a big difference to how you are coping.

Btw, the antibodies explanation you were given in hospital is another way of explaining demyelination, the process underlying MS, where the immune system attacks the protective covering (myelin) on nerves, damaging them and causing symptoms related to whatever those nerves normally do.

Yes, there is a chance you could have damage further down your spine. Most neurologists only scan the head and neck, but demyelination can happen lower down too.

There is still a good chance that your symptoms will continue to improve because it’s really quite early days yet; I’ve heard that neurologists don’t count symptoms as permanent until at least 6 months have gone past without improvement.

Go make an appointment now

Karen x

4

thanks very much for both of your replies. I always worry im being ‘too dramatic’ or ‘making a fuss’ so have put off ringing the doctors. But seen as it feels different i should really and try get seen by a neurologist properly.

when i was in hospital i was given the tests ordered by the consultant on the ward, he wasnt a neurologist but he felt the symptoms were brain or nerve related, so it was just a head and spine MRI. It is earlie days, i suppose im getting run down by pretending everything is ok and it will all go away soon, then going through the dissapointment that its not every day :frowning:

but it certainly does help to just write that down.

thanks for the replies

amy -x-

5

Hi Amy Just wanted to reassure you that you are not making a fuss at all. There is clearly something wrong which needs to be addressed by a Neuro. As Poll and Karen suggest please see your GP and get a referral and also some meds for the problems you are experiencing. No one should have to suffer like this day in day out. You owe this to yourself and your lovely son. Just wanted to let you know that we all understand how you feel on here and want some help and relief for you. Thinking of you, Teresa xx

6

thanks so much, i do feel better just reading the replies and have decided i will ring tomorrow to see my gp. i also need to try track down my my lumberpuncture results as they seem to be floating around lost somewhere. i’ve been putting it off hoping each day it will get better but today it seems worse, like its going back to befor when i couldnt walk. time i try to take this MS bull by the horns and try help myself a bit more.

has anyone had similar feelings and found that any particular exercise or alternative therapies helped?

im thinking maybe lack of sleep, feeling emotional and some stress could be making this worse so im going to try have a few more days of doing nothing and hope it will help.

thanks again i really apprieciate the replies and knowing i can come here to offload a little. if anyone ever needs to offload to me anytime please feel free. its real difficult what we are going through and wish everyone the best

amy -x-

7

i am just 6 months into my diagnosis and i have had a relapse as well in that time and been in hospital both times as i lose mobility completly. it is very worrying and frightening time. but you do get to know when you can do things and when you need to just rest and not do anything.but you do need to see your dr and see a nuero. all my lesions for mty last relapse were on spine so ask for spine mri. i do wish you well .

8

Amy, please don’t ever feel you are making a fuss when it comes to your health. My whole family spent New Years Eve in resuss and ITU because my Mum didn’t like making a fuss.

You know your own body and when it’s not right.

jacqui

x