Last year I had some balance issues, I kept misjudging spaces and banging my shoulders on the door frame, walls etc. I also had blurry vision for things up close. The blurry vision lasted a week and the banging into things last 3 weeks. I had it in the back of my mind about MS as my Mum had it, but put it to the back of my mind.
This year I have had a few clusters of strange symptoms which include LOTS of bad headaches that paracetamol doesn’t cure, waking up with dead arms and/or hands, blurry vision, stumbling (when I look down, I’m not lifting my foot up high enough and stumble), banging into the walls/door frames, clumsy ness and a tiredness that is totally consuming. Again, I put these to the back of my mind as getting a doctors appointment is hard to come by these days and these symptoms aren’t life limiting, just difficult and annoying.
3 months ago, my toes got cold and numb. I could barely feel the hot water bottle put directly on them. Then I got pins and needles on the soles of my feet. Taking my shoes off gave me some relief. Over the course of a week, the pins and needles spread up my calf’s and thighs and even my groin and on a few occasions my legs have felt so heavy and disconnected I’ve had to stop to give my legs a good talking to and get them going again. It was at this point that I finally got round to making an appointment with the doctor, which will be on the telephone on the 4th January.
My symptoms are now back to just tingling in the soles of my feet and groan, made worse by exercise.
My question is this … how much detail do I go into? I have no faith in doctors at the moment. I started suffering with awful allergy symptoms 3 years ago and found the doctor was extremely unhelpful, especially when she diagnosed me with stress and anxiety (I have neither!!). They seemed to take exception to the fact that I had googled and taken a list with me. This has put me off for doctors taking me seriously.
i know I should mention everything, but when your call is limited to 10 mins and you know that they don’t like suggestions or ideas, it makes me wonder if it’s worth it.
Hi Foxy. Sorry to hear you’re experiencing these unpleasant symptoms. I’m by no means an expert, I haven’t had a diagnosis of even a referral to a neuro but I’m experiencing similar symptoms since Sept now and the two GP consultations I have had (10 mins over the phone) have been really frustrating. I wish l in hindsight I had listed everything and been more pushy about going through each one. I only focused on the sensory symptoms - tingling and pain - as I felt the balance issues were maybe vague. Both times I was asked if I was stressed or anxious and advised it probably wasn’t anything serious as I wasn’t falling over and my bloods look ok. So based on my limited but sympathetic perspective I’d say get it all down on paper and make sure you’re heard and the GP addresses each point. It’s too easy for them to write it off as malingering, neurosis or stress. Good luck - hope you get a way forward from your next consultation.
Hi Anne and Carol. Thanks for taking to the to read and answer. I wasn’t sure whether to mention that I bang into things because I don’t really feel unbalanced at the time, I just seem to misjudge the space needed, if that makes sense. Another symptom I have is struggling to say the word. I might want to say pass me the salt shaker, but I just get as far as pass me the erm … you know … the erm … the thingy! Sometimes I do this a lot and sometimes not at all. It will just be one single word that I get stuck on. I know what I want to say and can see the word in my mind, but can’t get it to travel to my mouth! I’m worse when I’m tired.
I guess my actual question was … should I actually say that I feel MS is a possibility? Or should I say nothing and let the doctor dictate?
Anne - what are your symptoms? What made you think of MS? Mine was because of my Mum having it and the symptoms I know she experienced.
Hi Foxy. I think it’s better to cover everything, and not worry about things not being connected - I fell foul of worrying I was throwing too many things into the mix but what Carole said about jigsaw pieces sums it up I think. I have a habit of being over polite and a bit apologetic when I see a GP - especially when they’re so stretched - but I wish I’d been more pushy with the two surgery GPs I spoke to. Between these two appointments I ended up in A&E when I lost feeling in one leg and had difficulty breathing out one night due to feeling of tightness just under my chest. It had settled by the time my partner got me over there and I was seen but the A&E GP mentioned the possibly needing an MRI ‘to rule out things like MS’ but she sent me back to my own GP saying politely that they needed to pull their finger out basically. She did say I looked ok and as my oxygen sats and blood pressure were normal she felt it was likely covid recovery (I was 4-5 weeks post covid) but she also said as I left ‘you will need to push’ - now I know what she meant!!
In terms of symptoms, it started with fleeting pains in my hands and feet; like electrical currents. I felt exhausted and wondered if maybe I had arthritis or some kind of virus. Bouts of tingling in hands and feet followed and I found I was struggling to stay on top of a job I enjoy. I normally thrive on pressure but I felt like I was unravelling a bit, forgetting things & making mistakes and I was finding it hard to express myself when normally you can’t shut me up! Just like you describe, I was losing words and getting frustrated, even snapping at people - ‘you know what I mean!!’ cos I’d just go blank. I then improved and felt better for a few weeks and put it down to stress. Shortly after I caught covid and that seemed to stoke it all up again. The pains and tingling sensations got a lot worse - sometimes my whole upper or lower body would feel under attack from different jabs and stabs and needling. I asked my partner if I was going crazy and he admitted he was worried and that I was slurring my speech at times. Around then I sought GP advice and started to Google. Since then it’s calmed down a lot and my speech and energy have returned almost to normal but I’m still getting pains and tingling in extremities and the ‘jabs and stabs’ in random places like neck, arm, face. Not constantly but here and there. I’m changing GP surgeries at the mo, finally registering in the village I moved to last year. I’m hoping a small, friendly surgery will be easier to navigate than the hectic London surgery im still with now.
Oh and flipping dropping things! All the time! I love to cook and I lost count of the breakages and the cleanups over those weeks I was worst. But that has resolved now, not feeling it so much.
Thanks for your reply Carole. I know you’re 100% right - I just need to steel myself before I face starting from scratch with another GP - I’m changing surgeries right now, long overdue aw I moved areas a year ago. I’ve heard this new surgery is great and it’s a quieter area so fingers crossed! Thanks again for the moral support x
Wow! We really are describing each other. Due to my stumbling and dropping things at work, I am known as being terribly clumsy! I’ve only been there 6 months so they don’t really know me all that well to know I’m not usually that bad. I’d put it down to rushing. The speech thing is not bad at the moment, but 4 years ago I went through a stage which lasted a couple of months ish where I was doing it constantly in every conversation along with extreme tiredness. I was like a child on ‘You’ve Been Framed’. Totally unable to keep my eyes open, falling asleep into my tea. At the time, my husband spent every evening with me snoring on the sofa by 8pm latest.
I think for my first appointment, I am going to keep back things like that. It almost makes me sound like I am stretching for an MS diagnosis. I’m going to talk about dead arms at night, pins and needles in feet spreading up to my groin, the numbness (feels like freshly shaved legs, numb but not numb), the stumbling, dropping things and always tired.
Is there anything that makes the tingling in your feet/legs feel better or worse? Does it feel worse with exercise or better with rest?
Thanks Anne - you are making me feel like I’m not going mad after all!!
No probs, it’s a comfort to share experiences. It’s hard to say whether anything makes the tingling worse but I do notice it more at night and often after a hot bath - that could either be temperature or time of day related I guess. I’ve started to exercise again in the last week, just gentle walking, but that’s cos I have been feeling less exhausted and wobbly. I think that’s helped me feel mentally better but it hasn’t stopped the pains and the sensations. I often find as the day goes on that leggings and jogging bottoms make my legs feel horribly constricted and itchy so I’ve started changing into loose cotton trousers. That helps my legs. And massaging them helps me feel more comfortable too. I read that topical hemp/CBD products are good to rub into the skin but I haven’t got around to buying any.