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Can't believe I'm writing a post??

Hi, we’ll as title suggest’s I can’t believe I am writing a post on here…

My story so far…

Started IVF in Nov as desperate for a second child. Two weeks into IVF drugs my legs went numb and both feet freezing cold. I thought it was just drugs I was on. After a week of this I told IVF docs who told me to go to GP. GP instantly referred me to Neurologist and was seen within a week. I reluctantly stopped IVF drugs at this point as docs etc didn’t think this was anything to do with IVF and suggested I needed to sort out what was going on before getting pregnant.

Neuro referred me for MRI of spine, which i had two weeks ago. Neuro phoned saying they had results and we arranged to meet. I have two areas of inflamation on spine. He wouldn’t diagnose MS as I have only had one episode and mentioned you need multiple episodes to diagnose but has sent me for, blood tests and nerve tests (next monday, called provoked essentials or something) and I am waiting for MRI of brain.

I am so scared, although he didn’t diagnose me with MS we spent the whole hour appointment talking about MS and I am sure this is what he thinks it is. I have a follow up appointment on the 21st Feb by which time they will have more results and know more.

I can’t believe two months ago I was happy and excited about Christmas and IVF and future seemed so bright, we are moving to a lovely new house and things all looking so good…and now this…I am scared about what the future holds, I am only 35 and I dont want to be ill.

Hi Vicki… me again !!

I am 34 and now feel scared too ! Mine started with cold sweats but no fever followed by slurred speech, then vertigo and not able to walk in straight line ( people thought id been drinking during the day…ha ha ) pins and needles in hands, loss of sensation to the right side of my face,neck and scalp and a hazy right eye ! Ooooh lucky us !!

The hospital consultant said the same as yours… CIS was what id originally been diagnosed as but he said really MS was likely with the amount of lesions on my brain ! Great…Terrific I thought it was a stupid middle ear infection !!

I got moved to a professor as I never wanted to feel this rotten again and wanted to take part in clinical trial, and lets be honest…they are far more likely to monitor the MS in trials than not ! Although in hindsight I think I prefered being in the dark and thinking I was as normal and healthy as I was 6 months ago !

So here we are, both of us having some good days and some bad eh ? Im trying to stay positive and naturally sarcastic around my friends and family so they wont worry about me and wrap me in cotton wool.

I know it seems uncertain and frightening… but we’ll be ok ! There seems to be some really nice people on here and maybe some good future advice for us ??

Nella xx

Hi Vicky - welcome to the site

You must feel a bit like you’re in a whirlwind, it’s all happening so fast

It’s really good that you are being taken seriously, your GP and neuro seem to be on the ball and you don’t have all that long to get a full report though!

You nearly got the provoked essentials bit right - they’re called evoked potentials They basically measure the electrical signals in whatever bit of the nervous system that they are testing. If there is damage along the pathway, the signals can be delayed and/or slower than normal.

To be diagnosed with MS, you need to have multiple parts of your nervous system affected and to have had multiple attacks. If your brain scan shows ups lesions then you definitely satisfy the first bit. That will mean a diagnosis of “probable MS”, one down from a full diagnosis of MS.

Being scared is a completely normal and sane response to all of this. Time will show that what I am about to say is right, but for now you’ll just have to try and trust me… Having MS does not mean that you won’t be able to have children, move house, or have a bright future - all of these things are still possible. Yes, MS brings challenges and changes that we’d rather not have to deal with, but it is not the end of the world. MSers can still have a long, happy and fulfilled life. Promise.

Karen x

Hahahaha…‘evoked potentials’ is what i mean…bet your thinking we’ve got a right blond here!!! (truth is I was too lazy to go and get the letter from the kitchen so as I could get it right, although I am blond…)

Nella, I think your right about advice on here. Everyone seems really nice.

I think you must be abit further down the line than me. Just opened the post and I have a brain scan on 28th feb but my next appointment with the neurologist is on the 21st so am annoyed they wont be able to give me result of brain scan then. Taking part in a clinical trial sounds a good idea and I will definately do this too if offered.

Your symptoms seem far more than mine too, I initially had numb and freezing cold feet for about 4 weeks but now have just this internal tremor feeling in my lower half. I get tired quickly too.

Do you do any exercise? I used to run and was gonna start again in the new year but after all this I don’t think I have the energy, was thinking about swimming instead?

I always say,“don’t think about lack of energy” especially with running My SO said to leave it till the New Year but could not resist starting back running the day of diagnosis back in November. Not fast but it brings the endorphins to try to swim again. Always start somewhere for excercise and thought best to start with something I love doing!!

Hi again,

Im not that much further ahead of you by the sounds of it…its just that my ‘episode’ was very severe and the professor that im under now is concerned that I have had 3 ‘episodes’ in 6 weeks due to sheer number of lesions on the brain and another on my lung.

1 week after steroids, I saw the neuro consultant and he told me that I was unique for first episode and that there were worldwide emails flying around because of me…yay !!

3 weeks later, I was meeting with a Professor Hobart who was really helpful and sat and explained everything he could to me and my husband and ordered more tests to prove how aggressive my ms is…and a week later i was in for a 50minute mri… and thats the story so far, im still waiting for the evoked potentials and lumber puncture but he seems very on the ball so thankfully i dont think i’ll be waiting too long.

As for exercise…ive begun walking to school and energy levels are returning now, but im not ready to do aerobic type exercise yet… i keep looking at my cross trainer and think…hmmmm maybe tomorrow ! ha ha. Swimming will probably do you some good and oooh if your pool has a hot tub jump in that too !!

I have had a couple of sunbeds and i felt a bit better, and ive also been to see a kinesiologist to see if he can lessen the symptoms…keep you posted on that…

nella xx

Hiya, sorry would of replied before but spent yesterday afternoon and evening being sick, urgh …thanks to my 6yr old daughter who brought a bug home from school at the weekend. What is a Kinesiologist? sunbeds sounds a good idea too.

My evoked potentials is next tuesday, and then i go back to neuro the following tuesday.

How do you feel about all this? I feel so upset. I have always battled against tiredness, my husband says i would sleep 24/7 if anyone let me, but I always battled against it and have made myself go running and walk dog everyday. Now i feel like I have lost this battling spirit, like something bigger (MS)is going to take over me and stop me getting out there and living my life.

Sorry to sound so depressing when you sound so upbeat.

Sorry for taking ages to reply … internet crashed !!

So hey,

Dont apologise for feeling low… I get days like that too ! I was surly to my special nurse the other day because well…I bloody well felt like it ! So I was having a bad day and tough luck nursie ! So dont worry !

Pretty much all through the end of November and December I slept on and off all day, watching re-runs of two and a half men ( bit of comedy can be good ) Neuro guy says that its perfectly normal to feel dog tired after these episodes for months and for me not to feel guilty…yeah ok, easier said than done when the husband is doing everything and looks tired and stressed out himself eh ?

Ive done the burying my head in sand bit. to feeling sorry for myself bit, then the angry part where I just want to shout at anyone in my path and goad them into an argument. Now im beginning to come to terms with things and just have hope that it wont get too bad, and that the meds will help to carry on with life and all the shite it has to offer i suppose !! ha ha

Kinesiology is where someone taps into your central energy field, the body has meridians that can become blocked for various reasons. Ive done the first session and i had blockage in my central meridian which was causing a pain between my ribs, that was caused by stress apparently and today the pain has gone and my hazy eye is clearing too… voila !! Roll on next session in 10 days time… Though I was told by Kinesiologist to cut down massively on my sugar and cigarette intake… boo hoo.

It feels lonely sometimes though, and although I dont want ms to define me, or become a victim of it, its damn hard without people to talk to who can understand these emotions that we have. Im getting more and more determined everyday that this wont beat me down… not yet anyway !!!

Here if you need me… to vent, rant etc,

Nella xx

Hi…hang in there…it seems a god crowd on here…I too am in early stages of a dx…and the uncertainty isnt easy to deal with…I would say do what you can re exercise…swimming is good…I do yoga and some weights on good days and some cardio even if its 10 mins here or 10 mins there during the day…I walk my dogs every day with a power trike which turns my wheelie into a trike…My energy levels are not great some days and I just accept things will get done as and when…I live on my own…am pretty positive and independant and go with the flow sort of person…but lately I have foind being in limbo difficult at times…so just wanted to offer my support…I too am waiting on mri brain scan and not sure if they will want me to have any other tests.I think from reading the posts on here is can all be scarey…no matter whether you dlevelope acute probs or have had past probs and undiagnosed…its a shame in my view that they cant do a fast track system for the MS diagnosis route…my parents live in france…and there when you have a scan mri or ct or x ray the Dr sits down with you and goes through the scan and results same day…no hanging about …no waiting…and therefore this reduces worry.fear anxiety and ultimately you get to see the right peole and have access to treatment quickly…