I dont know if I am in the right place and in all honesty I dont think I am I feel incredibly guilty even writing on this forum or visiting this site. Around 4 weeks ago I lost the vision in my right eye for around 30 mins. I panicked, called husband, got scared and then it came back and I laughed if off. For a week after this is felt exhausted, dizzy, bouts of vertigo etc. Tried to speak to GP to no avail and then spoke to optitian given the initial problem started in my eye. They did all their checks etc and confirmed that since my last eye test 2 years prior. The vision in both eyes has significantly deteriorated and suspected an eye stroke that cause the temp vision loss. There was no damage to the retina or optic nerve that he could see. Advised GP appointment. Managed to speak to GP the next day and was invited into the surgery for full blood count and a check up. 24 hours later I was at the stroke clinic in the local hospital. After all their tests they concluded it was unlikely to be a TIA but ordered a MRI of the brain (urgent) and a referral to the neuro. Signed off woff work and advised not to drive until diagnosis or further investigation. Fast forward to now, I am having very very strange symtoms and every time I do the worst thing possible I know, and ask DR google, I am pointed to this website, or a forum on early onset parkinsons disease. My symptoms consist of the following. Tierd / fatigued / vertigo Headaches Emotional Strange feeling down my arms (I can only describe this as an elastic band being stretched and twanged) Numbness or tingling in right arm Tremors of my right index finger Restless right leg Electric shock type pulses in my arm and leg (again right side) Co ordination issues Pain in big toe Right said feels heavier Confusion (when speaking I am saying the word in my head but it won’t come out my mouth) My MRI has come through for 3 weeks time and I am told the wait for neuro is normally a long one. I feel i am going mad! Since all of these symtoms and the last few weeks I am remembering things that have happened over the past years (around 8 years) that have happened that I thought nothing of until now. GP said keep a diary and write all down. Diagnosised zoplicone to be used as and when for restless legs. I am sos scared something is really wrong and the waiting is horrendous. How can I get past this waiting stage without going insane?? I do apologise if I’m in the wrong place. Just hoping for someone to put my mond at rest
Here is as good a place as any! Many here have been through limboland, and quite a few still in it, like myself. Whether it is MS or something else, limboland is the same. It is tough emotionally though. The longer you are in it the more you get used to it … I think the term ‘patient’ is very apt, for those seeking medical attention.
Just take each day at a time. Try to find time to do things that you like doing - depends on your interests though. I love wildlife, so something as simple as feeding my tame robin, or watching a hoverfly go about its business helps calm me. The 3 weeks to the MRI will go past pretty quickly - it seems like an eternity now though. As for the wait for a neuro - some seem to get that pretty quickly, others it may take a long time. You should get the results from the MRI relatively quickly though, which I presume will go to your GP.
No need to apologise or feel guilty for asking here.
We were all terrified when we first experienced odd symptoms.
Waiting times without covid were usually long, but now are even worse.
Just wait it out and stop googling!
Boudsx
I can’t really offer much advise, as I’m also undiagnosed with odd symptoms, but I’ll wait it out with you as I have an MRI booked for just under 3 weeks.
Limbo land is definitely hard, but it’s been 4 weeks since my GP referred me so I just keep reminding myself that I’m over half way to my MRI now. The way I’m trying to think of it is that this time until my MRI and hopefully follow up with Neuro is a good opportunity to really monitor symptoms and try to identify any triggers.
I’m in limbo land as well at the moment. I’ve been discharged by neurosurgery / orthopaedics, so I’m now waiting on neurology.
Ah all of you on this page are waiting for a diagnosis.
I remember my own road to here.
some parts were really slow and difficult and others were fast and easy.
There’s one thing left to say - you are all warriors and brave warriors at that.
Believe in yourself, Be kind to yourself, treat yourself.
I hope your outcome is a good one.
whatever it is though, it doesn’t have to bring you down.
Don’t let it!
Carole xx
Unfortunately none of my MRI scans were done with a contrast agent. Although I think the reason they did the scans were to look for signs of stroke in brain, or issues with spinal cord in neck and lumbar spine caused by herniated discs etc. Perhaps that’s something I’ll discuss with neurology when I see them