Hello, I’m New And These Are My Symptoms.

Welcome and introductions
1

Hello,

I’ve been concerned for the past 2 years about maybe having M.S. but I just don’t really know.

The only reason I feel this way is I have built up a picture over the past 20 years.
I’m now 53.

Firstly I’m worried about explaining all of this to my doctors in case they think I’m being silly and don’t take me serious or do anything about how I feel about my symptoms and pain.
I am in pain every single day.

Around 20 years ago I was told what I was feeling in my chest area was costochondritis, the feeling was like a grappling pain, a little like been kicked in the solar plexus but in the middle of my breast bone which would come on around every 5 mins and last a few days and would happen around twice a year.
Admittedly I haven’t had this for quite a while now.

I also get the most awful pain in between my shoulder blades which feels like it’s on fire and takes a good week to ease. It’s very hard to turn in bed when this happens.

I suffer with pain in all of my joints and if someone went to press every single bone on my spine it would make me say ‘Stop’

I also went to see the same doctor about my arms and legs in 2016 flicking, lashing out on their own accord when I first get in bed and they said this is normal. I’m in no way drowsy when this happens.

Sometimes my upper body will turn rapidly on its own accord when I ‘am’ about to go asleep though but this last bit is rare. The flicking of my arms and legs happens every day.

I have bad incontinence which has been bad for the past 20 years and I have also suffered with constipation for the past 3 years and I’m on medication sachets for this.

In 2017 I had a displaced disc in my L5 S1 area of my lower lumbar spine after having a numb left foot and pins and needles for around 9 months which was operated on having a microdisectomy.

I have permanent numbness on my left inner calf, the size of an orange since this operation or should I say I only noticed this around then.

I was also tested for swallowing difficulties and was told I swallow food before my throat realises, so food gets stuck.
I always have a phlegmy throat which never goes.

I also suffer with Vertigo and Ocular Migraines which are quite infrequent although I do feel dizzy on a regular basis.
I once had vertigo where my eyes were going at such a fast rate sideways back and forth. This with my eyes has only happened once but I still can get vertigo.

When I’m asleep I wake up with choking and gasping for air which has started back up again which first started in 2017.

I have mentioned this to my doctors and they didn’t say anything.

In 2022 I had uncontrollable fatigue where I’d get up, have breakfast and then get drowsy and was tested and had low vitamin D where I had to have tablets for 3 months.

I struggle getting washing out of the washer as my arms feel like they have no energy, even stirring food in a saucepan I have to stop after a minute with strain in my arms.
I now struggle with the stairs and my right knee locks coming down them.

For the past 17 months I have had what I call fascilations in my right calf 24/7 which never ever goes. I can see my calf rippling and I cannot lay on my back without the pain in my right upper and lower leg been so bad. The doctors say’s this can happen?

Where the muscle would be on the outside of my right calf is a big indentation. I’ve noticed this over a year ago.

Apparently I have some nerve compression which could be bilateral and the physio said last May it should ease within the next 3 months. Fast forward 9 months I am still the same.

Now on a regular occurrence my lower leg goes into spasm and locks if I kneel down and try to get up or randomly happens when I’m sat down. The pain in my calf the day after feels like it’s strained which lasts for several days or gets worse on happening again.

My toes keep curling up and back which used to happen mostly when I got in bed at night every time but now it happens a lot during the day and still at night.

My lower back also can go into a spasm and has led to some new symptoms which was a spasm running from the middle of my lower back on both sides reaching around my lower belly which in turned made my legs and feet rigid where I could only shuffle walk. This lasted for around 5 mins.

I suffer with crawling on my face going down each cheek but now I have it over my upper right lip.

Thank you for listening,

Helen.

2

Hi Helen,

Even when the symptoms are ms and very much only can be MS a gp is likely to ask how your mood has been lately and if you’re stressed. They aren’t qualified for anything ms related.

Took me about 20 years for anyone to really listen and I came by my diagnosis because a physio asked for an MRI of my neck and even with a lesion the gp still insisted it was probably nothing.

You need to be firm with the gp. Mention the bladder, fatigue, jerks and numbness and that you want a referral to neurology and an MRI to check for lesions. It could not be MS and something else but in able to move forward and start managing your symptoms you need to know why!

I don’t know how private works, if you’ve got the fund/insurance might be worth taking that route. From the MRI to a full diagnosis it took 8months for me, and it was only sped up due to a pretty big relapse.

I hope you’ve not get MS but it definitely sounds like you need some answers! You do sound a lot like my mum, and a bit of comfort for me with the migraines is that hers disappeared with the menopause, so I’m hoping mine aren’t to do with the ms and at some point they may stop haha!

Please be firm with the GP, you will never get a diagnosis from them you just need to know what to ask for. If you aren’t getting anywhere try signing up with a different gp as well. You’ve obviously got something going on and even if it turns out you can’t treat it at least you know what’s happening.

Also keep taking vitamin D regularly even after you’ve finished the boost. Just take the regular recommended amount. The UK doesn’t get enough sunlight to get sufficient levels

All the best

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3

Hi Helen. I’ve no idea whether your symptoms are a result of MS or not - to be more accurate they sound as if they could be but for all I know they could be symptomatic of other conditions. Either way one thing I can say without doubt is that if I were you I would see my GP ! Whatever the cause of the symptoms I would most definitely and without further delay want to find out what is causing them.

As ‘sunrie’ says , a diagnosis of MS can sometimes take a long time and medics will try to see if symptoms are caused by any other conditions. In my case however, it was all pretty quick. Went to my GP with tingling of my face. GP sent me for a CT scan which didn’t reveal anything but GP said OK but we need to keep an eye on your symptoms. Tingling went away but around a year later I had optic neuritis , had an MRI within a couple of months I think , and then diagnosed by a neurologist. ( all this was 18-19 years ago and wait times for MRI and neurologist might be longer now).

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4

Thank you so much for your quick and kind reply and also the valuable information too.

5

Thank you for your quick and kind reply with lots of information to take in.

6

Hello,

I’ve made an appointment with my doctor which is in the middle of March.

Ive finally done it.

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