MS or Carpal Tunnel???

New diagnosis and before diagnosis
1

Could I have some advice please?

I’ve suffered with dizzy spells for a long long time, and more recently I’ve had two nasty episodes of head spinning / motion sickness which lasted for a couple of days. I have also had some episodes of a really painful leg that feels like sciatica. Along with all this, my middle finger went numb about a year ago, and still is, along with some constant numbness in other parts of my hands too. I also have intermittent numbness in my ankles and feet. Two years ago I went through a period of horrendous chest pains, but no diagnosis was made. I have reflux issues which affect my voice, and have the most horrendous hot flushes which also affect my voice. They could just be down to the menopause, but does that last 6 years?

I have had some nerve conduction and EMG tests today, and have been diagnosed with carpal tunnel syndrome in both wrists. My real worry is that neurology will discharge me back to my GP to treat the carpal tunnel syndrome.

I’m slowly losing my mind with worry about all my symptoms! I’m also a breast cancer survivor. My GP referred me to the Community Mental Health Team as they think I have general health anxiety! What am I supposed to do now? No one listens to me, I haven’t had an MRI scan, and I am unlikely to because I’ve been diagnosed with carpal tunnel syndrome. That can’t be causing the dizzy spells, numb feet, clumsiness, memory loss, leg pain, and everything else! I’m exhausted and feel like I’m constantly fighting the professionals! No one will take me seriously and I’m at the end of my tether! I just don’t know what to do next? I’m being classed as a raving lunatic, but I know my own body. Any tips please?

2

Hello Lunat1c2020

The bad news is that menopause can last up to 14 years, and unfortunately, some of the symptoms of menopause are similar to/the same as some MS symptoms, which can also be symptoms of B12 deficiency. All of which makes diagnosis very tricky.

OK, now that the bad news is out of the way - time to make a plan to tackle the professionals and take control, as far as you can, of how things progress from here.

It is always good to remember that we can, unfortunately, have multiple conditions and need to look at the whole picture, not just one part of it.

Are you keeping a symptom diary? If not, get a notebook and start keeping track of when symptoms occur, what the symptom is, how long, how bad etc. This is a useful tool to a) see exactly what and when symptoms occur, and to reference when seeing GPs, Neuros etc. Also, use this to make notes at each appointment you attend.

Has B12 deficiency been ruled out? If not, insist on blood tests to check that (and Vitamin D levels).

With regard to the dizziness - have you been checked out by the ENT (Ear, Nose & Throat) for vestibular issues - this would be a good move if you haven’t already had physical vestibular issues ruled out.

Be strong and insist on a referral to Neurology - the carpal tunnel issue is not causing any of the other issues you have going on.

Regarding the referral to the Community Mental Health Team - I think most of the people on the Forum have been referred to Mental Health at some point in their journey. Go with the flow, if as and when you get an appointment with them, go have a good talk, get some of the frustration off your chest. I self-referred because I was being told my symptoms were being caused by stress/anxiety - turns out, I’m not an anxious person, nor am I unduly stressed. Not long after, I developed further symptoms and an MRI proved without a doubt that I have MS.

In the meantime, to help get things back on track, you could try a couple of things. Squaring your Breath: Sit up straight, breathe in for a count of 4, hold your breath for a count of 4, breathe out for a count of 4, hold your breath for a count of 4; and repeat. Do this 4 or 5 times in a row. It will help calm your mind and body.

Mindfulness/Meditation. You don’t need any special equipment or to learn any chants - you need to be in a comfortable, safe place, sitting down or lying in bed (quite handy as you can meditate then go to sleep); focus on a point roughly where you would hold a book whilst reading, relax your eyes (you can close them if you want) and clear your mind. At first it will be difficult, thoughts will pop up - acknowledge the thought and put it aside for later and continue to clear your mind. Do this for 5 minutes to start with, and work your way up to 20 minutes. Once you can do 10 minutes, you could change the routine by focussing on an object - say a flower, paying close attention to every detail of the flower for between 5 and 20 minutes.

You can do small bouts of mindfulness throughout the day - take a couple of minutes to study a flower in detail, or the view from your window, or enjoying a cup of coffee before the day really gets going. Small moments of being in the moment. Grab them as often as you can.

3

You might like to use the search function to look for carpal tunnel-related posts on here. You will be able to read of many people’s experiences.

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Thank you for your advice, and for taking the time to reply!

5

Thank you for your reply. I received a letter from Neurology today confirming Carpal Tunnel Syndrome and for the GP to treat accordingly. No mention of any other symptoms, and certainly no MRI. I have also been diagnosed with health anxiety, so now no one will take me seriously!

I have a GP appointment to discuss things on Thursday, as I don’t want Neurology to discharge me, based on carpal tunnel! I haven’t even had an appointment with them to discuss my symptoms. Just nerve testing for Carpal Tunnel!

I am not surprised that they have pinned this onto a non physical reason - it’s easy to label things in that way.

Vitamin D deficiency has been confirmed previously, and I will be taking supplements for life.

Have had appointments with ENT for different issues, but not for the reason you mentioned.

Why do we have to become our own doctors to determine what’s going on, and not with the help of the professionals?

I’ll see how stupid I’m made to feel on Thursday, and move on from there. Seems that it could be a very long road to any diagnosis, other than a mental one!

Thank you for taking the time to reply to me!

1 Like
6

I know this post is old, but I was wondering if there was any update.
I had my carpal tunnel operated seven years ago. I didn’t get an MRI, and it was a prevention because the results from the needle test were inconclusive.
Now my GP mentioned that it might be MS, but my iron is low.
It’s so confusing!!