A little advice please ... :)

Hi. This is my first time here. I’ll give a little back story but try to make it as short as possible. I started having problems with my health after my son was born. Firstly i was diagnosed with endometriosis… then a while later i began to experience chronic pain - i was then diagnosed with fibromyalgia… i also tested positive in many blood tests during an antibody screening … although the specialists were very incnclusive on a diagnoses … they told me they ‘think’ its lupus. But i have no symptoms of lupus. So it was just left with that. I’ve been struggling with chronic pain, all over, sonce I was around 24. I’m now 29. About 3 years ago i randomly began getting muscle twitches. Not just ones beneath the skin that cant be seen, but full on twitches where my linbs were jerking and flying out left right and centre. Gp fobbed me off for a while so i went to my specialist instead who referred me for an mri for brain and cervical spine. Everything was ok there so i was told they, again, ‘think’ it is neuromyotonia. Anyway. Fast foreard to now, the twitching seems to come and go but it worse during times I’m feeling very unwell. Last month i woke one morning, and it was like i was drunk. I hardly made it downstairs before having to crawl back to the bedroom. I was ‘spaced out’ and dizzy for almost 2 weeks. I went to the drs. They did some tests. My heart tate was high so i had an ecg but that was ok. Went back the next day for a follow up and the dr did a neurolical exam. Testing my strength and eyes etc. She said she noticed somethibg with my left eye as i was following her finger, but i can’t remeber what she called it. That was two weeks ago. Ny bloods showed i was a little low in folic acid so i was given then and sent home. For a few days i felt somewhat okay … i was still very dizzy but was able to get around the house. But now its come back with a vengance. I’m dizzy, my ears are on and off ringing, i never have headaches and now I’m getting them, like sharp stabbibg pains in my head and face. The past few nights I’ve been aware of very light pins and needs in my feet and sometimes my hands. It seems to come and go. I’ve had other sensations such as burning patches, numb patches, sharp stabbing type pains and eletric shock type sensations. I looked into ms … i haven’t had any visual symptoms or numbness to the point I’ve lost control of any movement. But whatever is goung on seens to be getting slowly worse. I am thinking it could be MS but i guess ill find out soon as I’ll be going for another mri. I’m not quite sure what I wanted to get out of this post … maybe just to get things off my chest … not to feel alone. And also any advice. Did anyone else have symptoms that weren’t atypical of a flare, but more milder symptoms first? Thank you all. I hioe everyone is well Stacey x

Hello Stacey

Welcome to the forum.

It’s difficult to answer questions like yours because MS is an awkward bugger. We all experience MS quite differently, so some might start with certain types of mild symptom and others with a great big wallop of a relapse.

Then there is the fact that there are many other diagnoses that share symptoms with MS. As you’ve already had one brain and C spine MRI that was clear, it’s entirely likely that your next one will be too, and it’s not MS at all.

You’ve not said whether you were referred to a neurologist for the MRI or if you’re just seeing your GP. If your symptoms persist regardless of the results of the MRI, perhaps you should ask for a referral to a neurologist?

Hopefully the MRI will be soon and you’ll get the results quickly thereafter. Feel free to voice concerns on the forum, we will try to help if we can.


Hello. Thanks for the reply. I’m seeing the gp tomorrow - but last time she said if my symptoms hadn’t improved she would refer me to neurologist. I’m going to ask for a scan again, even just to put my mind at east. I do wonder if anything could have develop since 2 years ago as these are all new symptoms for me. Hope you’re well Stacey

Hi stacey how did you get on with the GP?

I had non A typical symptoms which would come and go and confuse me lol. I never thought of MS and only just 20 years ago facebook and google were just starting so Dr google wasnt quite so prepared and to be honest even though I taught I.T. i had no issue in looking as i had no clue what it was.

I actually thought i had Lupus. My dad had it. My first test for Lupus was positive, then the second one six weeks later was negative so told not Lupus. It would take me ages to write down all the rubbish that hit me over the several years from my first main one going blind in 2000, but i can remember telling one of my fellow educators that I felt like i was being attacked by an evil genie who was sat on my chest sticking pins in me lol. Also in 2004 i had a collapse with massive UTI and fatigue and was off work for six months and told it was all stress related. from 2004 until september 2006 I had some of the weridest things. then the day i found it really hard to walk around a car boot, like my legs were stiff and i was walking through concrete i had to quit and go home which was not me as i loved car boots, then the next morning my legs well i couldnt get up they were stiff and werid and that was the day my real journey began.

but i never concentrated on any one thing, i just said tell me what it is and cure me lol.

ah well they told me what it was but alas no cure for me lol.

Mind you having a baby can have a huge impact on your body and stress is even worse.

I hope you got somewhere with GP. x(one thing i never gave up).

Hi, thanks for replying. I’m glad you got a diagnosis and help in the end. Interesting that you mention a UTI as I have been hospitilized twice for UTI infections that went to my kidneys. I always wondered if they were just random things or related to something else.
GP told me today that my B12 is normal, we were hoping it was low b12 as it mimics the symptoms of MS, but, it came back normal. Now I just have to wait to see the neurologist, i only hope it doesn’t take too long.

Take care,

Stacey x