Undiagnosed and dont know where to go from here...

Hey everyone…

Not sure where to start but here goes! I was recently referred to a neurologist due to scoliosis and lots of strange symptoms I’ve been experiencing over the past year or so. It started with muscle pain in my right shoulder (which I thought was occurring due to some lifting tasks at work). This has since developed into tingling in my shoulder and upper arm every day, often while at rest. Initially I dismissed this but since then I’ve been having other issues. I occasionally feel sharp pains in my chest (the best way to describe this is like precordial catch)… I had an ECG and all was fine. Then came the persistent acid reflux. I tried to cut back on acidic foods and was put on a daily prescription of lansoprazole. This keeps the issue at bay but if I stop taking it, the acid reflux returns within a couple of days. I’ve also had pellet stool for as long as I can remember. As a kid my diet wasnt great (not much of a fruit and veg fan) but these days I certainly eat my 5 a day and drink plenty fluids. I also walk every evening after work for at least 40 mins at a brisk pace. I also eat a fibre rich diet, i’ve tried adding extra fibre just in case i’m not quite eating enough of it (fibre bars, prunes). Over the past few months i’ve noticed that every time I need to pee I also have an urge to pass a stool. Only tiny amounts each time. TMI but I also sometimes pass stringy vegetable skins :frowning: its not pleasant.

I’ve also been experiencing pain in my right foot and ankle (especially in the mornings). Sometimes its an intense burning sensation and other times a dull ache. I also sometimes suffer with restless legs and recently I’m experiencing what I believe it known as ‘sleep starts’ each night when I’m drifting off to sleep. Also, I noticed that I’m wearing out my bed sheets where my feet are positioned… like I’m fidgeting in my sleep. They aren’t old sheets… its quite unusual.

I also experience vertigo occasionally or I think that’s what it is. I have a weird feeling that I’m falling forward and then it disappears very quickly.

I’m tired all the time, I struggle to get out of bed each morning but I do it. Late to work every day.

When I seen the neurologist he sent me for Xrays and MRI scans of my spine. His initially concern was that I might have a ‘tethered cord’ as my reflexes were brisk.

I’ve since had my follow up with the neurologist who explained that I have a lumbar scoliosis of 30 degrees but no damage to my spinal cord. He’s referred me for physio. The remainder of my symptoms are unexplained.

As my MRI scans were clear of spinal cord damage, does this mean I wouldn’t have something like MS?

I’m really not sure where to go from here… so many strange things and what do I tackle first :frowning:

It is good news that your MRI scans were clear. Doesn’t completely rule out MS, but does strongly suggest that it is from something else.

Has the physiotherapy started yet?

Paradoxically acid reflux is often due to too little stomach acid. Some people find cider vinegar helps.

Have you tried magnesium? Many people are deficient in it. It may help with the restless leg symptoms.

Thank you so much for responding!

My symptoms got worse this week (heavy, weak legs) so I called the doctor. Got blood tests taken on Thursday so hopefully will get some answers from those. I also spoke to the neurologist and he’s suggested that if nothing comes up on my tests that I come back for more mris, including one on my brain. Will see what happens next.

I got a very small rash appear on my stomach yesterday, I believe it’s a Petechiae rash. Something definitely not quite right with me at the moment.

Physio hasn’t started yet but I got my letter through yesterday so will be booking my first appointment tomorrow :slight_smile:

Angela

Hope you get some answers soon. At least they haven’t given up with you and will be doing further testing. It often takes time with neurological stuff for them to figure out what is going on, get enough evidence and reach a diagnosis. Sometimes they can’t reach a diagnosis if it is rare. Sometimes things clear up of their own accord. Good luck with the physiotherapy.

Thank you!!

My blood results show that I have low ferritin levels. Have an appointment with the doctor this week to discuss. I assume this means my body isn’t getting enough iron however on an average day I definitely consume the recommended quantity… maybe an absorption issue. Regardless, I’m glad some progress is being made and that I’m not imagining things!!

Angela