Help, no diagnosis, just need to talk

hello, I’ve not got a Ms diagnosis, I fact I’ve been told fnd and I also have fibro. I’m awaiting an mri and for once in my life I’m praying something shows… Weird I know but I feel I’m going mad… I’m pregnant too so… Pretty much all symptoms have vanished but prior to that I was so ill. Permanent pins and needles in left foot and lower leg. Also spread to arm and hand both sides though this did abate sometimes hours or days after. Drunk walking, always funny as I love leaning against stuff to stay upright. Muscle weakness, migraines, blurry vision specially in left eye but no vision loss or ON. Cognitive difficulties. Extreme tiredness, you know, the sort where someone drains your complete battery, brain shaking. Dizziness Muscle spasm, tremors (visible to the eye), in my head and body. And a problem with heat. In fact, I still have a problem with heat lol. It brings back majority of symptoms, and I have to cool down or I get really ill. I had a shower last night, normally I have a cool shower but thought I’ve got lots of pain prehaps a hotter shower will help. Got out, got dressed and then dizziness, weakness etc comes flooding back. Have to be careful out in sunshine too. Discovered drinking lots of cold water helps and minimal clothing. It evens happens in winter, normally I wear a vest top and a light coat specially if I’m out walking (which I still try to do despite having mobility issues) because if I got hot I start to feel really unwell… Neuro agreed to an mri but has said it will show nothing so it’s pointless. I’ve read about fnd and yes I can see why but not like this. Prior to pregnancy over a 2 year period I got so ill. I’ve had intermittent things before, like migraines only started in last 5 years, pins and needles used to come and go. Muscle weakness as well. Always been affected by heat, wouldn’t have baths before after 10 mins or so I started to feel unwell… And that’s where my confusion and desperation lay. I phoned brain and spine foundation and had a lengthy chat with neuro nurse. She said if what I was saying is true then she would be pushing me to rule out ms. I can’t find any info regarding fnd and pregnancy but I have been told that stress would make the fnd worse, if that’s true I should be bed bound lol. (My bean is ill). I just feel like I’m going round in circles. Last year I could have sworn it was ms but now after all this I don’t know. Just anyone who can help or comment etc please. I’m desperate. I’m stuck. Xx


Hello Lizzie

I can see a few things from your post

1)You are stressed

2)it is good you are getting an mri

If you ring a brain and spine foundation they are going to tell you to rule out ms. If you go to an anxiety forum they are likely to say it is anxiety.

I feel if you rule out ms then you may need to stop searching for answers. I think you need to look at relaxation techniques. Also have you ever had cognitive behavioural therapy. I hope you can gain some peace and enjoy your pregnancy

Kat x

HI Lizze

Firstly congratulations on baby news …when’s baby due ? …and sorry you’re having such a worry at what should be a wonderful time .

I am newly diagnosed , but can relate to some of your symptoms . The road to diagnosis is often long and with many other explanations along the way ( one locum Dr once laughed when I mentioned someone had suggested MS …and said I was too old …i have just turned 44 and symptoms started in my 30,s …I left feeling like a hypochondriac ) thankfully my own G.P was far more helpful …

I have no way of knowing if you have MS but suggest you go for Mri regardless of Neuro view it will show nothing …if he is right hopefully will help reassure you …if he is wrong at least you know and can get the help and support u need …

In meantime try not to worry too much and enjoy your pregnancy ( easier said than done I know ) …be kind to yourself on bad days and embrace the good …and take comfort in the fact that you are on the road to hopefully getting answers

Lastly remember you aren,t alone …I,m New to this forum but have found there is some good advice and support on here

Hope you have a brighter day today …thinking of you x

Hi Lizzie

i kind of know where your coming from but then everyone is individual in all this

ive had issues since December and they have come one after the other tingking, burning, cramps, aches, pinching pains and issues with needing loo all the time, so far nothing on mri so they’re leaving it go which I think is mad but what do I know

how are you getting on now? By the way your not alone

hi i have not got a diagnosis yet my symptoms started feb last year by having vertigo being signed of work, 3 months later my eye sight had become blurry optician said he wanted me to see the eye specialist at he hospital as stronger lenses made no difference.

Then in june last year i was in the supermarket and i felt like i was dragging my leg it felt heavy in the eve watching tv i went to stand my left leg had gone numb and i fell back on to the sofa, i could not feel it even when i hit it it was like rubber.

When the leg returned it came back with pins needles that didnt go away on the sunday night i woke up screaming convinced there were fleas i felt like i was being bitten in my bed, my husband rang an ambulance they gave me morphine and said my nerves were causing the pain.

the next day i saw gp who put me on medication 3 days later i stopped weeing and was taken in to hospital catherised to drain the fluid away.

My memory is awful and i loose what im saying or cant find the words i need or they come out wrong

i remained in hospital for 2 weeks i had a brain scan and an mri they found 2 grey matter in the brain i was diagnosed with fibromyalgia, but going to a support group my symptoms are very different from the others.

i have gone 6 months with no more symptoms and apart from my sight i thought it had all stopped and what ever it was has now gone

The arches in my feet have dropped pins needles are everywhere even up my nose

the eye doc wants me to have a lumba punch and another brain scan as he is worried about my optic nerve i am getting a lot of pain at the back of my eye they have become dry and i get like a juddering from the eye.

today i have had pain and sensations under my arm pit a squeezing around my head and top of my ear fatigue is really bad

i could go on but i just want to hear what others think on here hugs to everyone