Not sure what to believe [No diagnosis yet]

Hi all,

I predict this will be a long post as this is the first time me putting down in writing was have been happening for 4 months now. I’d like to start by saying I have not been dxed with MS - drs are saying i might have a psychomatic disorder. If you take the time to read this thank you very much, but if you don’t want to hear yet another story of how someone’s struggling to get dxed then please go ahead and skip :slight_smile:

My current situation/past trauma

I’m 28 - male. Not very satisfied at work, hung up on a an old flame - no real relationship for about a year and sudden passing of my mom from an accident 6 years ago. I suspect I have been maybe not clinically depressed, but just repressing a lot of feeling for a while now.

January

Sports injury in left shoulder that moved to neck for a week, and then went away with anti-inflammatory medication

March

On my last day of a trip to London (I live in France), I started getting quite strong localized headaches around my left temple/top of head. That lasted maybe a couple of hours. After that came tension headaches that lasted 3 weeks, paired with dizziness, low grade fever, night sweats, a fear of dying (first time) and cognitive fog. My veins seemed to pop out a lot more also. After 3 visits to the GP, that month, I had a blood test done which showed nothing of significance except for low vitamin D. I also insisted to have a brain MRI with contrast, which came back clear. Was put on sinus medication (?!)

April

Post-MRI my symptoms came down a bit and I had 4-5 days of feeling like I was recovering, until I woke up one morning with both my feet feeling cold, not to the touch, but they felt cold. Blamed it on bad circulation. Except both my hands started feeling that way 4 days later. I subsequently started having sensations of burning in my biceps. Went back to Dr because at that point i started panicking, dismissed it as it did not fit into any pattern and since I had no weakness in limbs. But put me on Lyrica, apart for doubling my appetite and making me dizzy again did not help much

May

So many symptoms I am forgetting about, a lot which go away and don’t come back, but during that whole time I’ve had overall body tingling, dizziness, belching (belching has stayed throughout), sometimes brain fog, eye fog in both eyes for a couple of minutes at a time. Joint point in right knee then left knee then both wrists. I decided to I was not having this and (I know this may sound extreme now) saw: 1 MS specialist, 1 well accredited neurologist, yet another neurologist, another GP - I went all in and asked for: a cervical spine MRI (which came back clear), a vitamin B12 test which came back at 300 ng/l (low but in normal range), thyroid which came back clear, and vitamin b6 which came back high (as i started taking supplements i guess). EMG test which came back clear.

The MS specialist told me it was psychosomatic, the second neurologist said I could be starting a fibro and the third one I have not seen again.

June

After a week off work, i came back early june and the first two days I had what felt like anxiety attacks/conscious seizure in that I could act normal but my brain was shut off, I could not think logically and could not get any work done. This last two days and waned progressively.

Right now my symptoms are still very much present. I have overall body twitching that seems to be getting stronger, the numbness in my hands is not strong but constant and limited to my last two fingers on both my hands. Jaw tingling and slight numbness more on the right side but overall on both. Fatigue is making it difficult to get anything done, i have persistent floaters in both eyes. Overall symmetrical symptoms but sometimes more here and there.

Started seeing a psychologist, because one can always use professional guidance :), but I wanted to have advice from this community on what to do as I feel the doctors are ‘closing my case’. I have started to accept that everyday will be full of odd sensations (which are almost exclusively sensory), so I am less panicky about it but I wonder if i should just wait it out, take a long break, push for a Lumbar puncture, lyme test (is lyme common in big European cities like london and paris?) etc.

Any input would be much appreciated. Also, I am new to this, so I hope my post is not insensitive to anyone.

Best

x

Well yeh…there’s a lot going on in recent months.

Difficult for any of us to say what it could be.

Don’t mean to offend you, but could any of these physical symptoms be due to your dissatisfaction with your job, sadness over losing your mum…it’s possibly very delayed PTSD…plus not getting over your lost relationship?

You’ve had a lot of tests, which have shown zilch.

Maybe your psychologist can find what’s going on.I hope so.

Pollsx

Hey Boudica,

thanks a lot for reading and answering. I guess that could be it, at this point i am open to any diagnosis as long as i get one. I do realize 4 months is not a long time for an auto-immune dx. But the symptomps i’ve been getting from polyneuropathy to cognitive fog to tingling all over keep redirecting me to ms and are there daily and difficult to ignore. Also, since i’ve had no ‘good’ days in 4 months it made me wonder if a flare could last for that long and still not show up in two MRIs?

Anyways very kind of you to answer.

x