A couple of questions while I'm waiting....

Hi every one.

Im still waiting for a response to my ‘urgent’ referral to a neurologist and have a couple more questions if you don’t mind.

I keep dipping in and out of this forum as I find it really helpful to understand everyone’s different experiences. I’m also mindful however that I’m hyper sensitive to every ache or niggle I’ve had over the last few weeks and don’t want to become neurotic!

My initial symptoms that led to my gp referring me was a six - seven week period of a superficial numbness to my neck on the right side with occasional stinging or sun burn type feelings. I also experienced a ‘wriggly’ feeling in my chin which progressed to a visible twitch. I’m not getting it so often now but when it comes it feels like it’s drooping but it’s not. For a couple of days I also had a twitchy bicep. Not a muscular movement, just a flickery nerve, and I sometimes get a nasty stabbing pain under my chin/jaw bone. On a few occasions I also noticed a burning on my top lip and right eye lid.

The thing is all of these things (except the pulling on my chin) have gone over the space of a couple of days and I now feel like a bit of a fraud! My gp says I should still go to my appointment (when it comes…) but it almost feels like I imagined the whole thing. Also, all of my symptoms were restricted to the right side of my body so could it have just been a trapped nerve through sleeping a bit wonky?

I’m also looking out for every little tweak or twinge which is driving my husband crazy! I’ve noticed (I think!) probably four or five times a slight tingling/buzzing in my left hand. Towards the end of the day I’m also getting a nasty ache in both of my legs. It’s hard to describe, not like achy muscles but more like a sickly dull ‘toothache’ in the bones. Now these two things are not isolated to the right side as everything else was so can it even be connected?

Everything has either been so fleeting and transient (other than the numb skin) am I just making a mountain out of a molehill??? Or maybe suffering a large dose of hypochondria? Or maybe just going a bit mad!

Any thoughts or injections of sanity greatly received

​Betty

x

I’m not sure about the ‘sanity’ bit, but for what it’s worth, these sort of symptoms aren’t unusual… I get a nerve twitching in my right eyelid when I’m over-tired or stressed, and occasionally a strange feeling in my legs, while in bed… like water running over them, but not on the surface… Doesn’t hurt, but is just odd. I just put it down to ‘one of those MS things’ and generally ignore it!

The water running inside the leg is a weird feeling, I use to think it was something to do with my veins and sometimes it felt so real I would have to check I was not bleeding down my leg or worse was when the feeling was in the groin I use to think I had wet myself , all good fun. The achy feeling is what drags me down sometimes , because it’s relentless and you can’t do anything to stop it aching. Today it was in both ankles , feet and in both arms from the elbow to the things, the ache is often a heavy weak feeling . Do keep your appointment the fun with MS it seems, is every day can be different and often on top of that if you are having a relapse then that one annoying thing does not go away.

I hope your symptoms get better soon

Dianne

Betty

I am in a similar place to you, awaiting a neuro referral for what my GP refers to as ‘non-specific’ symptoms for 3-4 years now.

I’ve tried to keep a symptoms diary but you are right, you end up focussing on every little thing and driving yourself mad.

From what I understand of my own symptoms (and please bear in mind I have no diagnosis but GP put that he suspects MS on my neuro referral letter), I have some permanent symptoms (numbness in left hand/wooziness in my head which never really goes away) but most of my other symptoms do come and go (for a period of days/weeks or at the moment just hours). However, if I have been unwell (which I have) or under any sort of stress, all my other vague symptoms (fatigue, lack of balance, numbness elsewhere, tingling, weird sensations) exacerbate and I end up completely debilitated.

I totally understand what you say about feeling a ‘fraud’, I feel like this too at times, but then my symptoms return and I know I’m not imagining it.

All the best

Jane

Thank you Jane

Goodness! 3-4 years seems a mighty long time when I’ve only been dealing with this for a couple of months. Do you have any idea how long your appointment will be?

I think I need to just chill out a bit and be a bit more patient. I’ve now noticed a weird ‘tickly’ feeling under the skin on my right thumb. It’s happened 3 times now over the last two days but I’m not going to mention it to hubby cos I’ll get that look that says ‘for goodness sake we all get that kinda thing’ lol.

I hope you get your appointment soon. Thanks for your reply.

Keep in touch and let me know how you get on.

x

Thank you Betty.

Hopefully referral will be soon but in this area it can be up to a 16 week wait.

My symptoms didn’t really warrant seeing GP initially as I’d just put them down to being tired/busy/stressed and my age! I did go about my hand which he said should resolve and then months later I realised it hadn’t. To be honest it wasn’t until a recent infection that everything was retriggered so I wrote everything down and I guess he joined the dots.

I know exactly what you mean about mentioning symptoms to DH. Mine doesn’t do illness especially if it’s not him! Thankfully I’ve got a few friends who know what’s going on that are a great support though suspect they get fed up too!

Take care

Jane x

Thank you everyone.

I think it’s helped just getting it off my chest so to speak.

Chill pill taken and just need to be a bit more patient

betty x