What is going on? Full Timeline History. I need help (non diagnosed)

Hey Everyone!
I am really struggling right now and need some advice, some help and perhaps some support. I will try to break down everything but it is a little complicated as It started in the US health care and now I am living in the UK again. I feel like I am going crazy and it is my head … I am close to the edge and it is not getting better. Please if you have advice I need you. I will shorten it as much as I can.

Quick story
From the UK married an American guy we moved over there in 2015 and then everything was dandy (2 kids and 22 years old) until 2020…

February 2020 In the Bath I was shaving my legs and I realised I couldn’t feel what I was shaving and got a little scared but thought it would be fine.

14th March 2020 Woke up and couldn’t feel my left foot it completely dropped and I was scared, my legs felt numb and fuzzy

16th March Doctors sent me to A&E, They did blood tests and CT with no contrast they didn’t find anything but referred me to have a brain MRI.
Confirmed the foot drop and gave me Methylprednisolone 4 mg

6th April 2020 Brain Mri with and without contrast (all normal)
prescribed Methylprednisolone 20mg

Returned to the UK

8th March 2021 Legs started to feel numb, depressed, weightloss (20+lbs) headaches, tired, pinsand needles hands.

24th April 2021 Neurophyaiology appointment (Nerve conduction, EMG = all normal)

26th May 2021 MRI, head, spine cervical, spine thoracic, lumbar spine, sacral. = lost results

28th September 2021 MRI brain with contrast = nothing heard but chased with the doctor who said it is fine.

5th June 2021 Legs numb, going to the toilet alot, pins and needles in hands, can’t grip, tired so much, headaches, (tripped over my feet at work causing injury)

9th March 2022Extreme red eyes, Itching all over, sickness, shaking, temp, tiredness, weakness, ache, sore throat. Blood test Positive for Epstein Barr Virus (Glandular Fever)

13th June 2022 numbness in the left foot, tingling in both legs, itching legs, Migrains, sleeping all the time, weakness, (During the crazy heat we had)
= The doctor signed me off work, upped my Sertraline to 150mg and booked a Neurology appointment (February 2024).

27th October 2023 Itching all over my body feels like ants crawling all over me, one enlarged gland in the right side of my neck ???

30th October 2023 The Toes on my right foot started Burning like there was a fire under them, almost made me cry it was so painful (lasting around 30 mins) then my body started itching - the back of both legs, under the bra, stap, face, under arms, hair. Then my face started burning on the left side only and it felt so hot.

What is going on with me?? Is it in my head?? I can’t take it anymore :face_exhaling: I am a Teaching assistant 31 years old and this is killing me because no one can see it. **what can I do?? **

Thank you for listening I needed to get it out :pleading_face:

Hi Tori,
That sounds really stressful! Did you only have the one spinal MRI with the results lost? Most of my symptoms are waist down, numbness in feet and legs, spasticity in legs etc, and nearly all of my lesions are in my spine. Can you ask for a spine mri with contrast?

What an ordeal… it’s not surprising you are at the end of your wits. You’ve had all these symptoms and then the associated anxiety as well. No, symptoms like pain are not something you just “imagine”. The fact they are invisible to others does not make them any less real. And it’s hard to cope when everyone expects you to “perform” as normal.

Presumably you’re on this forum because you’ve looked up the symptoms and you’re worried it might be MS. Unfortunately MS is quite hard to diagnose - it needs a combination of symptoms and findings from things like MRI scans, so nobody on here is going to say “that must be MS” or “that can’t be MS”.
The next step is obviously a neurologist and you’ve been referred for that. You may need another brain and spinal cord MRI - the spinal cord might be important since your previous brain MRI was clear but they seem to have lost the spinal cord one if I’ve followed that right.

It’s obviously going to be tough for you to wait until February for a neurology appointment - that’s a long wait from a June referral. If there were anything you could do to bring that forward it might help, but you may be stuck with it given the state of the NHS. You could go back to your GP though (the one who referred you in June) and tell him/her about the new symptoms, just in case they can arrange something a bit sooner. If not, your other option is to try to bring things forward by going to a private MS neurologist if you can pay for it. Try to check out any private neurologist online before you book (e.g. for patient reviews, signs of relevant expertise).

For the immediate symptoms, you might ask your GP for pain relief? They sometimes prescribe amitryptiline for nerve pain, for example, if that might be the cause. It can take a week or two to work, so best to get it going if that might help.

One last point: it sounds like this taking a toll on you. If you need to talk to someone, the I think the MS Society has a helpline. You can also call Samaritans - 24/7 - there is always someone who will be there and listen…Don’t feel alone with this.

On the private referral front, ideally you’ll want to see privately the NHS consultant that you’re hoping to see at his/her NHS clinic. You can find out online who’s who locally and your GP might advise.

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What a time you’ve had, it sounds like a really difficult time. I’m still at the beginning of my diagnosis but really relate to thinking it’s all in my head :no_mouth: if you don’t get the medical validation that what you feel is real, it messes with the head! But I want to tell you that’s it’s not in your head, you know your body and what you are feeling and it’s REAL. Please keep telling yourself that when you doubt yourself, because it will help you advocate for yourself during your appointments. Sending you all the best!!

Thanks so much Kaytea, It is so hard to think positively sometimes.
<3 goodluck to you too xx

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Hey Leonora,
This week has been terrible I have no idea why it’s happening but the burning in my toes and my face has just got worse and the itching comes and goes just after the burning stops.
So the reason why im on this forum is in the US the doctors told me that this is what they are looking in to and wanted me to see a specialist but I came back to the UK before it could happen,
I called my doctor tuesday who gave me a phone appointment for Thursday so hopefully he can help >.< I am already on Amitriptyline but it makes me so tired.
Thank you for all the information I will look in to the costs of private neurology

Hey Anna! Yes only that one full spinal but no results. Hopefully, that is what they will offer me in February :crossed_fingers:t2:

Hi Tori,
Yes it’s a long road to multiple sclerosis dx, even twenty years ago if I remember but, you do get there in the end.
I hope you are offered treatment for your symptoms, in the meantime.
All the best,