Nobody to talk to

Symptoms and treatments
1

It’s taken me a while to pluck up the courage to even talk about this but guess if anyone can help it’s this site so here goes…

I am 50 but about 7 years ago I had a freaky episode, numbness down my left side, confusion, temporary sight issues in left eye and just general feeling of walking on sponge legs. I took myself to A&E and because of the numbness was tested and prodded and admitted to a stroke ward (even though a CT scan had confirmed I hadn’t had a stroke!). I had a head MRI done and a lumber puncture to check for MS but all came back fine. After a week I was advised it could be down to stress and working too hard so after a week in hospital I was sent home.

The symptoms did subside and I actually felt good for a long time and led a normal lifestyle working, going the gym holidays etc etc.

I had a referral about 3 years later with a neurologist as I was concerned I was losing my marbles and had started with dementia?Think I had a head MRI but can’t quite remember? I couldn’t remember peoples names and was looking at household objects and making my own names up for them as I couldn’t remember what they were called, and have constant tinnitus, it was scary but again I was told nothing was picked up and was discharged.

Around 12 months ago I noticed no matter what I did my hands and feet were constantly cold, even in bed my partner said my feet were that cold they burnt his legs when I touched him! Then came the fatigue, dizziness and blurry eyes and pins an needles in my fingers, but somehow I always found another excuse for it all and not once did I link any of it to the possibility it could be serious.

Things seemed to be getting a little worse, confusion with words and working in customer service I was making too many errors when responding to messages and emails (thank god for spellcheck) but again I joked and blamed my age!
The worst bit was around 3 months ago I almost collapsed as it felt like the floor was spinning and my legs buckled, if my partner hadn’t been next to me I would have hit the floor. I called the GP and was sent for blood tests and they said I was low on iron so started a course of iron tablets, it helped for a few weeks but then I was hit by the constant fatigue, numbness, and dizzy feelings again, even having to nap in the afternoon like a toddler, waking in the middle of the night to pee several times, waking with pins and needles in my hands and feet and just staring into space feeling confused and trouble remembering things.
4 weeks ago I woke with a tingling on the top of my left thigh but this was under the skin and was more annoying than painful, this then worked its way to the inside of my thigh and then to the right side of my leg, I had never experienced anything like this and waited a few days to see if it subsided but it didn’t. Again I called the GP and due to me having issues with a previous lower back problem (slipped disc) she arranged for an MRI to be done.

2 days after the MRI my left side was numb and constant pins and needles so I was again advised to go to A&E where they quickly tested the FAST tests to check for stroke symptoms and bloods taken again which came back normal, I was sent home saying I could just be stressed and anxious waiting for the MRI results. I did tell them that I am not and have a fabulous home life, I have a job, a loving family and although nobody is perfect I just felt I was being fobbed off.
The numbness did not subside and I started getting worse - felt like my legs were attached to lead weights, my left eye felt gritty and kept blurring over and caused me to squint. Headaches every morning on the left side just above my eye, getting out of bed I had to sit on the edge of the bed until the room stopped swirling, hand tremors, dropping things, weakness in arms and hands, aching neck and top of my spine, the dragging of my left leg and that tightening feeling across the chest, just that feeling that something is definitely not right.
By this time I had already been off work for a week as I just couldn’t function on the computer not to mention deal with irate customers so I called the GP again and spoke to one of the locums who just didn’t seem interested and basically said that they cannot do anything until the MRI Results were back and signed me off work for a further 2 weeks.
All the time I have been trying to function as normal as possible and as most of the symptoms are not physical people must think I am some sort of a hypochondriac so I would just plod on and not say anything, even though inside I was getting myself all wound up knowing that there is something not right.
I started googling stuff (always tell people not to do that too!) and all seemed to point to the same thing MS!!
I wasn’t gonna just be fobbed off so called for a over the phone consultation with a GP. When she called I gave it to her with both barrels and got so upset as I felt they weren’t listening. After I told her everything she just said “wow that’s a very varied scope of symptoms” no shit Sherlock I thought and told her I wanted them to refer me to be tested for MS! She has sent a referral to a neurologist and requested a head scan so all I can do now is just wait, still no update on the MRI from my back and that was almost 3 weeks ago.

So sorry for the long story and hopefully Things will start moving soon. All I know is that I am feeling a little lost at the moment and just wanted to tell someone.
Thanks Tracey :blush:

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I’m sorry you’re going through all of this right now. It is very difficult to get an MS diagnosis these days. I won’t discourage you by telling you how long it took me to find a doctor who’d take me seriously, but just keep documenting your symptoms and don’t give up!

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Thanks,
I had a good day yesterday but been floored again today so spent most of the day in bed. I just want something I can tell people , ie work and family. I can imagine it’s gonna be a long wait :disappointed:. I have also listed everything, even things from years ago as they could shine a light on what’s goin on at the moment.

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Hey, weather you have MS or not just keep talking, we are here and you are not alone! Hopefully you will get a MRI date soon and some answers. In the meantime we have your back. K

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I have decided that today I am not gonna let this take over my body and am pushing myself to do “normal” things. I drove my daughter to work, still felt a little heavy footed but it’s only a short distance so was ok and I’m cooking a roast for dinner. Sifting through paperwork that has been left for weeks so trying to keep my mind occupied. Nothing more I can do and some of the physical symptoms are still there (jelly legs, sore neck, numb hands and feet) guess after almost 4 weeks feeling like this I’m getting used to it. It has helped knowing I can now talk about these things and at least the sun is shining so I can sit outside a little instead of watching movies in bed :kissing_heart:

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Much better! Sitting in the sunshine has become a daily part of my life, although we did have snow yesterday…Just keep in mind that your new normal may be different from your old normal, and there’s nothing wrong with that.

I rarely drive any more and only cook about once a week, but I’m okay with that now. I use the computer when my hands work and read when they don’t. I dust and sweep when the legs are functional, and watch TV when they aren’t. It’s a constant give and take, but you’ll develop a pattern that works for you.

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7

Wow it really sounds like you have been through it.

Please take this in the vein it is offered, you may have MS, you may not. You might have B12 Deficiency or other conditions which can fire up neurological responses. The best thing you can do is be your best advocate, diarise your symptoms, feelings and severity so that you have information to look back on.

Diagnosis for anything will be slow and will involve a lot of people, it’s a big diagnosis and they will only make it if the are 100% sure it is what you have. I mean that from a place of kindness.

You will have a lot of tests, Blood Tests for all sorts, MRI’s, Vision Checks. You may see a number of specialists as they will want to rule in or out Rheumatology etc.

Record your visits as you can listen to it back, take your notes with you and list out questions you have so that you don’t forget.

I have had MS since I was about 19 according to my Neuro, I was diagnosed at 38. It took 4 years after a big flare up to get a diagnosis. My MRI’s had issues but my spinal tap was conclusive proof.

Good luck and try to put too much weight behind this at the moment, be quietly assertive.

Hope you feel better x

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Tracey, I’ve just read your story, on a personal note it was and is like looking into a mirror, I still feel alone but with this site I’m hoping that with you to talk through what is going on and what may happen.
It took a while for diagnosis but keep your chin up and keep smiling put your feet on your hubby that should keep you smiling hehe!!!

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My sympathies! It is a horrible and very testing time waiting to get a diagnosis. My thoughts/ advice are that as others including yourself have said, it might be MS but it might be something else. It’s not easy but the best you can do for yourself is to try and relax. Meditation is a good thing - have a look at Future Learn courses where there is an online course on Mindfulness delivered by Monash University (Australian University). One of the course leaders also does Mindfulness session for MS people but I don’t know where to find these. Whether your symptoms are a result of MS or something else, meditation/ mindfulness to calm the mind and body is going to be of benefit.

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Thanks, I do try and listen to meditating music while having a bath, it is relaxing.
I’m trying every day to tell myself that I don’t have ms and that I’ll be back to normal and at my desk working in no time, although I still have the numb hands and feet, pain now in my calves, thighs, upper back, neck, arms and wrists. It does seem to be getting worse, not better and I seem to be spending longer in bed too.
I contacted GP again last Friday asking if my sick note could be extended as not only unable physically but at the moment also mentally, unfit to deal with day to day retail complaints. Work have been great though and I have confided in my boss what I think my symptoms could be, tbh she has seen me struggle for a while in work, with my back, dizziness and also fatigue and is coming to see me next week at home for one of those “health reviews”
So anyway not had my lower back MRI results (this was requested by the doctor 5 weeks ago, after tingling sensations in my upper thighs), although the receptionist yesterday did make me aware, after telling me my note for work was ready, that if the results were urgent I would have been contacted!!
So, I’ll wait and wait but in the meantime I have an appointment with my optician today. I’ve not had loss of vision but I wake every morning with a dull headache over my left side just across the eye socket and keep getting like a fog like blurring. I had twitching in this eye a couple of months ago for about a week which I can only remember because it was annoying while trying to drive.
Anyway, getting harder to hold my phone for as long :joy: so I’ll update once I have any news xxx

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It’s been almost 6 weeks now with my symptoms and no signs of letting up, the optician said my eyes seem fine at the front but are referring me to an eye specialist to check the nerves at the back, hopefully in the next 2 weeks, she said this would be faster than waiting for the appointment with the neurologist that my GP has sent a referral to.
I’m finding it difficult to sleep as I now have pain almost everywhere, shaking getting worse and walking like a drunkard all the time. Just feels like someone has poured cement in my legs.
Finding myself looking back to things that could have been tell tale signs from years ago but I have also gently mentioned to my partner that this could possibly be MS. I think he is now as concerned as me but frustrated because we just don’t know.
I watched a short video yesterday about people coping with MS and it spurred me to get out of bed, get dressed and drive to the supermarket. It was strange but I just wanted to try and do something “normal” that I would have just taken for granted a few weeks back. I was ok but found myself wanting to get the stuff as quickly as possible and get home.
Oh and still no results from my MRI on my back :woman_shrugging:t2:

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If it’s any comfort, my bad spells don’t occur very often, but they last for several months. With any luck, you’ll be feeling fairly normal before much longer.

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So, I contacted my GP again (online service as no chance of getting an appointment if calling the surgery). When I spoke to the neurology team last week about my referral they advised that my GP could expedite the appointment if symptoms were worsened so I thought it’s been 6 weeks and with no let up and now being in pain I really needed someone to help spur things on.
The Dr called (another different one :woman_shrugging:t2:) but she was great, she wanted to see me straight away which none of the other GP’s had suggested, just kept telling me to wait or I’m stressed :weary:.
She did the normal movement tests and actually listened to all my symptoms, couldn’t help but get upset as it’s just so frustrating not knowing what the hell is causing this. She also said that my lower back MRI has no significant chance since my last one a couple of years ago and that the bulge on my disc was not pressing on any nerves? So what is causing the pain, numbness and pins and needles in my legs, hands and feet??? She seems to think it’s not MS as I did manage to pass all the movement tests but like she said she is no neurologist and has assured me she will send an email to them to try and get me in sooner, she also confirmed my head scan had been booked so the appointment letter will be on its way. She did say tho that my bloods had not tested me for diabetes or Vitamin D deficiency or B12 deficiency so gotta go for that to be done too.
Work rang and had a chat today, they have been amazing and have told me not to return until I am 100%. I really really want to get back to my job, miss the social part of work as starting to feel like a bit of a recluse and most COVID restrictions have now been lifted but still not up to even goin for a walk.

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I’m still waiting and still have the same symptoms.
It’s been almost 7-8 weeks from that first tingle in my thigh to now being off balance, parts of my body going into spasms and pain in my legs, neck and feet.
I just want to know what this is and if I’m ever going to be able to get back to working and some sort of social life again instead of living in my pyjamas and sleeping most of the day?
Can I just ask too does anyone feel worse after a nice warm bath, I’ve noticed a few times now that everything seems a little worse after I have one and I just have to lay on the bed for an hour or so until I stop feeling like crap?

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Hello

You really have been having a tough time. I’m so sorry you’ve been going through such hell.

The trouble is surely partly to do with the horrible Covid times we live in. Almost every medical appointment, referral, test, etc comes with a long, long, unhappy wait.

As others have said, don’t talk yourself into ‘it has to be MS’. It may not be. And although your GP is no neurologist, when she said she didn’t think your symptoms/reflexes presented as MS.

There have been so many people over the years that I’ve been a member of this forum, convinced they had MS until absolutely all the tests were completed and MS completely ruled out.

Did you get the blood tests done / results back from the tests for vitamins D & B12? Often vitamin depletion, especially of D and B12 can give rise to symptoms that could look like MS. There are other conditions too that appear similar to MS. For example, functional neurological disorder (see What Is FND - FND Hope International ).

I really hope you get some answers soon. Meanwhile, keep talking to us.

Sue

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Hi there, I had the blood test done today for the vit D snd b12 deficiency and also tested for diabetes so guess I will get any results by the end of next week.

I am keeping everything crossed that is not MS or anything else serious but I have to say after reading everyone’s stories about dealing with MS I have got to applaud you all, even if I have something that has mimicked MS and I don’t have it, all this has given me an understanding of what someone with MS has to go through.

After the blood tests, my partner and I went to the local supermarket. As my legs feel so heavy and I’m like a bowl of jelly I clung onto that shopping trolly for dear life, really concentrating on trying to not let people see me stopping every few minutes with leg, arm and chest cramps, let alone walking at snail pace. Oooh people are so fkn rude though, tutting and barging past me cos I had to stop half way down an aisle. All I kept thinking was what a struggle this is and no wonder so many actual disabled people get pissed off. I did manage to get what we needed but flopped back into the car when we had finished.

Cuppa and nice 3 hour sleep when we got home.

Thanks so much for listening and the advice :blush::blush:

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Still off work. (Think this is week6 but symptoms started about 8 weeks ago).
No appointments through yet but spoke to the neurologist team again who said they’re waiting in notes from the last time I saw them (2019). I have a copy of the report too which was when I was totally forgetting things, (names of people and objects etc…) I had a CT scan at the time and it states all was normal. I just hope they don’t fob me off and say they don’t need to see me :disappointed:
The last few days I’ve not had the shaking but still really heavy lazy legs, tired all the time, headaches and the worst spasms in my arms, neck and feet. You can actually feel the muscle tensing.
I’ve tried not staying in bed and walking round the house more, even turned on my laptop but I have no concentration at all so just switched it back off. Bit of a low day today as I keep expecting to wake up and feel a little more normal, then on the way to the bathroom realise my legs are still like jelly.
Helps reading through some of the messages on here. Xx

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Hi Yelloweye

Did you manage to get any answers yet ?

How are you feeling? I’m on week 6 of feeling exactly the same as you now and just when I think I’m ok to go back to work, I do and I have to cancel the rest of the week.

Hugs

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Hi fizzyfeet

I was actually gonna update this evening. So after 10 weeks off work my sick pay ran out so I returned after my pregabalin was increased. However since being back in for just under a week my hands, wrists, fingers snd feet are so painful which is a nightmare cos my boss is now asking if I am able to do my job???
I had my head MRI on the 15th June and called my GP to check if results were back, receptionist just bluntly told me they were back and were normal-NFA?
Sooooo I am still none the wiser what has hit me?? Got a telephone consultation with the neurologist on the 12th July so I just need to sit and plan what I am going to say, just don’t want to bombard them

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Snap, I went private for a neurology appointment and had a head MRI. I won’t list all my symptoms but very similar to yourself.
My head MRI came back ‘clear’ and when I had my follow up appointment the private neurologist seemed quite dismissive.

He said he can’t see what else he can do for me! I told him, I just want to know why I feel so ill and asked why he didn’t order a full spinal scan to which he replied that as I was self paying he felt it would add the cost up and unlikely to find anything.
Anyway I’ve got the scans posted to me on disk !

Very frustrating trying to explain and left me feeling like it’s all in my mind, but the tremors I can’t hide !

So, luckily I still have my NHS refferal which is in July for the scan and August for the follow up with a different neurologist. My GP also has added a full spinal scan, when I spoke to her, she said if I get any worse to go straight to A and E!

After being quite laid up again the last few days, it seems to have eased today ( I mean, I still have foot cramping, fizzy feet and hands and tremor but no dizziness and not so much fatigue) but I have been resting most of the day and I’m already in bed at 7pm but that’s been the new normal for me since this all started weeks ago.

So, I feel for you, I’m in the same boat !

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