My version of Limbo

New diagnosis and before diagnosis
1

Hi,

I’m a 32 year old female and another new one here not yet officially diagnosed.

If this isn’t limbo I don’t know what is.

Had Brain MRI, now waiting for first Neuro appointment

Anyone had similar back to front experience?

Thanks in advance for reading.

August last year woke up, felt off balance, put it down to late night and alcohol. Next day vertigo, No balance, cant walk, stand unaided. Walk in centre diagnosed Labyrinthitis (Away visiting family and stuck there for 2 weeks)

Then it changed.

Started to get on and off tinnitus, low whooshing like blood flow but not in time with pulse. Pins and needles in left side of chest when neck flexed, relieved by extending. Told due to tense muscles or anxiety by GP.

by November vertigo mild intermittent but balance and tinnitus still a problem.

Saw ENT January. By which time I was feeling almost feeling normal, Only thing noted was Nystagmus. Month later balance goes again so make follow up appointment.

In the time I waited the pins and needles spread to tingling/crawling feeling left side of my back. Severe spasms in my lower legs. A numb right foot for 4 days, pins and Pins and needles in my left hand.

Electric shock pains in my back and feet. chest pain, difficulty speaking (physically and finding words, understanding what people are saying) Difficulty walking, dragging my legs. The fatigue is horrendous.

By this time I knew my ears were not to blame and suspected MS as a possibility, but went to ENT anyway. They requested an MRI Brain.

Had MRI a month ago with results ‘suggestive of multiple sclerosis‘

A week after the MRI my thumb on my left hand started twitching, hand went into spasm, then numb for 2 days. I feel the chest tingling, electric shocks, and tingling in left hand everyday. Difficulty walking and fatigue has returned. Also had what I think may have been mild optic neuritis (my mum reminded me I had this pain in my eye severely about 8 years ago when a nasty flu type virus was going around)

I have a my first Neurology appointment at the end of July.

In the meantime what do I do?

2

Keep a symptom diary and formulate a list of questions for the neurologist. I went to my optician before my Neurology appointment to get my sight prescription checked as I was struggling to read drug ampoules on nights, was given slightly stronger prescription and clean bill of health for my eyes. See the GP if you get new symptoms in the meantime so they get logged. Not a lot else you can do, easier said than done but try not to stress as it does make symptoms worse.

Snowqueen x

3

Thanks, I made an appointment to see GP on Tuesday, just to make record of new symptoms. I’ve had so much time off work intermittently over last year, been off Longest was 6 weeks, then a 6 week phased return. Luckily my work knows exactly what’s going on so very supportive. I’m not stressed fortunately, Just need to get work sorted officially, been taken out off some duties and shifts on a temprary basis despite not having a diagnosis.