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Limbo Land :( feeling very lonely

Hi everyone, my name is Laura and I am 25. I am currently off work and feeling very frustrated.

I started this unsettled journey in October last year when I was rushed to hospital with a suspected stroke. I felt incredibly heavy on one side and had facial droopness, my speech was slurred. My Mum took me to hospital and I was seen straight away but whilst I was there I found it hard to lift my leg or arm on the left side. I was sent for CAT scans and MRIs, a few days later. I was admitted and stayed on the stroke ward for a week, I was finally let home with a zimmer frame and walking stick. I then had 3 months off of work where I slept pretty much ALL day. During my time off, 1 month later in the November I was rushed back in to hospital with the same symptoms. I was sent home thankfully the following day, the Consultant there at the time said she would see me for Stress.

I managed to get an initial consultation with a Private Neurologist in London, I met him and my left side was still incredibly weak with impaired feeling. He agreed to see me under NHS and to run further tests, blood tests and MRIs with and without contrast dye.

I have had both tests back - in letter form but no follow up until July/August. A lesion has been found in my lower spine but the head MRI and contrast test has come back inconclusive, which is promising but I still have no clue what any of this means.

Today, I am sat at home with severe tingling (a regular reoccurring symptom) after 2 days of sleeping all day, I have been on the phone to MS society and they suggested reaching out to others. I find physical tasks exasperating, which really upsets me as doing anything with my 5 year old hard.

Other symptoms I have suffered is constipation, vertigo, falling over and recently I have had a really horrible feeling around my chest. It feels like someone has a belt around me and is pulling it really tight, followed by tingly ankles and legs up. I don’t always feel in control driving, quite spaced out.

To say I am scared is an understatement until I know what’s wrong I have to carry on as normal but am scared of my lack of ability and what to do about this…help please.

Hi Loobie - looks like you’re reaching out in the right direction. Most people here are going through the limbo of diagnosis, or have recently been diagnosed (dx). All of us with a variety of different symptoms although fatigue is one of the most aggravating symptoms we have - the sleeping all day and still having no energy, learning to manage what energy we have is essential, I have gotten into the habit of planning each day, including time for resting.

The horrible feeling around your chest is known as the MS Hug - a number of people on the forum have this from time to time, I haven’t had it myself.

Don’t have hot baths/showers - getting too hot may make the symptoms worse. Try to keep cool in this warm muggy weather we are having right now. Drink plenty of water, will help keep you cooler and may also help with the constipation.

Make sure you use that frame/walking stick - lots of us on here do already, may not be the sexyist look going but is one heck of a lot better than face planting, and helps reduce fatigue a bit (brain doesn’t have to work so hard on maintaining balance).

Have you been prescribed anything? If not, have a word with your GP - get your VitD/B12 levels checked (if they haven’t been already). There are a lot of medications out there that can help with the symptoms and hopefully once you are more comfortable it wont be quite as scary as it is right now.

Hi Loobie

Sorry to hear of your problems, hope things get better soon, if its any help I have been in and out of the Dr’s for around a year now, with various issues some the same as yours some different… its is very difficult because you think sometimes your going mad… I just want to know what it is, and could do with a little help… sounds like you need it too… good luck Ben

Thanks TheresaB - I am on pregablim for the pain and sertalline for anxiety.

They haven’t checked my other levels and I am reluctant to keep going back to the doctors, I have been keeping a journal though.

One consultant thinks it may be Functional Neurological Symptom (however he hasn’t seen my results that show the lesion) I know that lots of people get misdiagnosed, it’s a complicated one isn’t it?

Thanks for the tips I’m sitting in the shade for now. :slight_smile: