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Any advice received gratefully!

I am a not yet diagnosed 38 year old female. I’ll set out my long story, as after a trip to orthopaedics this week (for numbness I incorrectly assumed was bought on by a herniated disc) I have been referred to a neurologist plus brain/full spine MRIs with MS being talked about as a possible cause. Please excuse the wall of text but I’m finding it strangely cathartic getting it all out in writing.

Obviously this has shaken me up a lot, I had never even considered this as a possible diagnosis, but the more I research the more all my disparate symptoms over the past 5 years seem connected.

Back in 2013 I believe I had glandular fever (EBV) which led to extreme exhaustion. The fatigue led to a fibromyalgia diagnosis in 2014, which then changed to a vitamin D deficiency diagnosis in 2015.

Over that time and since I have been suffering from extreme fatigue, balance issues and numbness/loss of feeling in my saddle region and tops of legs, with pins and needles, itching, weak hands that turn it to what I call ‘claw hands’ patches of numbness, reoccurring double vision, forgetfulness and brain fog, sometimes I can’t find the right words to say and I am hyper emotional, I also have what I call electric shocks occasionally in my sides and chest.

I am always tripping and falling over and have spent so much time in A&E from coccyx bruising and sprained ankles, people ask me how I injure myself and I literally just fall, one minute I’m standing and the next I’m on the floor! I just thought I was unlucky and clumsy!

I have just been living with it and trying to ignore all these weird symptoms but in mid 2017 the numbness had become extreme, I couldn’t stand or sit for more than 5 minutes without everything from my bum to my knees losing all feeling and a lot of pain!

I visited my GP again and he rushed me to hospital with suspected cauda equina syndrome, I had an MRI which showed I had a herniated L4/L5 disc (but luckily no evidence of cauda equina) I thought hooray, I clearly have an orthopaedic answer to these horribly debilitating symptoms, they can decide on a treatment plan and I’ll get better!

My orthopaedic consultant sent me for another MRI and a nerve conduction study this month and on Friday I was very excited to find out what steps we would now be taking.

My orthopaedic consultant then explained that yes I have a herniated disc, but my nerve conduction study came back fine so in his opinion there was no way the disc was causing my symptoms and he wants to refer me to neuro and get brain and full spine MRIs to look at MS as a diagnosis.

So that’s that, I am throughly depressed about it all and I was hoping my story may sound familiar to some or others may be able to offer any advise on the right questions to be asking!

Dear Jodie2018,

I was very interested to read your post as I have just posted my own story and yours sounds very similar.

The “Over that time and since I have been suffering from extreme fatigue, balance issues and numbness/loss of feeling in my saddle region and tops of legs, with pins and needles, itching, weak hands that turn it to what I call ‘claw hands’ patches of numbness, reoccurring double vision, forgetfulness and brain fog, sometimes I can’t find the right words to say and I am hyper emotional, I also have what I call electric shocks occasionally in my sides and chest.”

Apart from the electric shocks, I have all the same symptoms, but sometimes I have stiffness in my chest, like a squeezing sensation. I have been diagnosed with Ms, the not MS, then MS, and now not MS again. I do have herniated disks in my neck C4,5,6 and am waiting for an operation. I think this could attribute to the weakness in my hands and arms but not my walking.

I can’t give you any advice, but just to say that I understand completely what you are going through and I wish you better health and more than anything an answer.

It doesn’t sound familiar exactly: my simple history might have been taken straight from ‘The Ladybird Book of Neurology’ because diagnosis with MS was so quick and straightforward. So I don’t have much to offer, I’m afraid, beyond saying that I really feel for you in this worrying situation and I hope that you get to the bottom of things soon.

For what it’s worth, you do sound like someone who is good at dealing with calm good sense with whatever comes along in life. If you do turn out to have MS (and I hope you don’t) then that will stand you in good stead, that’s for sure. But let’s hope it doesn’t come to that. In any case, you are on the way to finding out more, and that always has more benefits than drawbacks, I think, however unsettling it feels.

Good luck with it all.

Alison

Thank you both for your kind words at this worrying time. I do always put on a brave face and just get on with things, but lately the mask has been slipping. I’m having issues with staff members getting stroppy about me working from home so much, and although I’m the boss I feel terrible. But how do you explain not being able to get out of bed for hours because your legs don’t work and stay professional, especially without a firm diagnosis. I have just had my spine MRI appointment booked in for 2nd June, seems an age away.

Hi Jodie,

Some of this sounds familiar to me regarding my wife.She was injured at work in Nov 2015 which seemed to cause a lower back and shoulder problem.Eventually Mri’s showed this to be a problem with disc at c6/7 in neck which was trapping and damaging nerves here and much much later another Mri showed problems with herniated disc at l4/5 i think.Pain relief didn’t seem to do do a lot and problems just didn’t seem to recover at all,which the specialist couldn’t understand and seemed surprised by.

She was always fatigued and by about Sept 16 i had noticed her stumbling occasionally but we assumed this was down to all the pain killers etc,so didn’t really give it a lot of thought at that time. She took to using a stick for support a few months later if we went out and was very slow walking due to pain etc we thought at time!

Then in March last year she had a massive attack which forced her to get an emergency Gp appointment and the first mention of Ms was made.Although obviously this was a devastating suggestion the more i read and the more i looked back and thought about what had happened with her it made sense and kind of all fitted.She was finally officially diagnosed a year later this March with RRMS(for now).She has been left with a reasonably high level of disability but are starting to get to the acceptance stage and trying to make the most of the life she can now.

I don’t know if all the disc damage is linked or just a coincidence but it was there.

All the best

Ollie