Not yet diagnosed. So scared.

Hi all. Im a 38 female. Im expecting ms diagnosis based on symtoms and one lesion found on mri. 2012 ish had fall due to numbness down right hand side and vision in right eye was solid grey. Admitted to hospial for 7/8 days. Had ct scan and mri. Lumber puncture ordered but not done. Diagnosed lesion on occipital lobe. Was told early onset m.s then discharged. Follow up neuro appt was told migraine. And to wait until something else happens. 2014 may/june. numbness and pins and needles in right arm, hand, leg and foot. Arm has felt heavy at times and unable to use it. Been ongoing ever since. Not all the time though I also started with a tremor in hands and feet …when i go to put foot in shoe etc my foot feels odd and tremors. When holding mobile phone my thumb twitches left hand.Not everytime. Sometimes i have spasms in legs or arms where they will flip out. Similar to when your just falling asleep and jump awake. Deep electric shock, elastic band snapping kind of pain in palm of hand when doing something like opening jars etc. Stumble over my words sometimes and struggle mid sentence with remembering what i was talking about. Late 2017 dizziness and fall in supermarket. 2018 started waking to a burning feeling in right toes which has gradually spread to whole right foot and halfway way up lower leg. Starts when duvet touches my feet. Feels like cigerettes being put out all over foot. Vibrating pain sensations and crawling ants feeling under skin. Horrible pain like your just about to get cramp but dont. Calf pain in both legs and tightness. Dragging feet when walking on occasion as stiffness to tight to lift them. Feet also feel freezing cold during day but normal temp to touch. Odd sensations and pain present all day. Overwhelming exhaustion. Could be down to waking through night with burning feet but feels more than that. Deep elastic band pain in left foot. Underneath and all pain left side from little toe to heel. Lump in throat. Difficulty swallowing as golf ball feeling. Maybe anxiety as hair falling out too. Pain and stiffnes in hands and fingers. Feel swollen. Hurts to bend them. Sorry for long post im just all over the place with this and so scared. X

Hello Avril

I’m not surprised you’re scared, anyone would be with a history like that and your current horrible symptoms.

But where are you with regard to diagnosis? Have you seen a neurologist? Or are you waiting for a referral? Had any tests yet (since the first MRI back in 2012?) And have you seen anyone in the intervening years when you’ve had symptoms?

It’s difficult to know what to say unless you let us know where you are with the medical professionals.


Ah yes sorry. Thanks for replying. I had a neuro appt on tuesday just gone but got there and it had been cancelled so new appointment now on mon 23rd. Since the first mri ive not seen anyone as i also have ocd and anxiety disorders. I dont leave the house very much as worry about sickness germs. I went to the gp a few months ago to report most recent symptoms and he referred me for this neuro appointment. X

I was going to put in my earlier post that your experience sounds very similar to mine. What happened to me was that I had my first MS symptoms and all the associated testing (which included LP and VEP as well as MRI) in 1997. Back then, they didn’t think it necessary to tell a patient that it’s likely to be the onset of MS, in fact they told me it wasn’t, despite evidence to show that it probably was. I then spent 5 years having relapses, optic neuritis, sensory symptoms, some motor issues, times of numbness and spasms, but I just kept ignoring them and pretending they didn’t exist.

This sounds like what you’ve done.

Eventually in 2002, I had a more severe relapse and saw another neurologist. He asked what I thought, by this time I’d done a bit more research and answered, ‘I think it’s MS’, ‘so do I’ he said. Another MRI to check and that was that. I’d had the LP in 1997 which showed O bands in the CSF, so it was more of a rubber stamping than anything.

I am not by the way, pre judging your neurologist. It’s still possible that it’s not MS. Things have changed in the last few years, and it’s possible you’ll not get the news you sound as if you are expecting.

What an absolute pig that you got to the appointment before they told you it was cancelled. And if it’s hard for you to leave the house anyway, it’s a double whammy. Poor you.

At least it’s not long till your next appointment. I know that still leaves you with 10 days of anxiety, which you could do without. But hopefully when you do get the appointment you’ll be able to start getting some medication to help with the current symptoms. Also, if you are diagnosed with relapsing remitting MS, you’ll be able to get some disease modifying drugs to reduce the number and severity of relapses.

In the meantime, why not write yourself a timeline of exactly what has happened to you and when, so that when you get to the appointment, you’ll have all the information to hand (much like you put in your original post). And if you have someone available to come with you to the appointment, it might be a good idea. The problem is that often we walk out of an appointment asking ‘what did s/he say?’ And ‘what did s/he say happens next?’ Since you already suffer from anxiety, it might be a bit worse for you to remember everything.

Best of luck for the next week. Hopefully the horrible sensory symptoms will get a bit better. If you find your feet and leg are burning, try ice packs, I’ve even put a wet flannel in a sealable bag, frozen it and used that to cool down burning feet. It works a treat!


Thankyou so much for the advice!! I will let you know what happens x