Tomorrow evening is my first appointment and I’m really nervous, worried I won’t explain myself properly. At the moment I feel as if someone has put clamps on various bits of me and are pushing down. I can’t even wear jeans as they feel as if they’re cutting into me - but they’re not. Yesterday the pressure around my chest was almost like I’d been told a heart attack feels, and then it’s painful to breath.
I have cold pins and needles in my shoulder and I just have no energy, the lead suit again.
Does anyone recognise these feelings please?
Hello Owl
Recognise symptoms? Ha, if MS was that easy, there’d be no point of having neurologists!
The trouble is that there are many, many symptoms of MS. Many of these also fit other diagnoses, both neurological and those within other body areas (rheumatology for eg).
So hearing whether people recognise your symptoms isn’t that useful.
What is perhaps useful is you spending a little (and I mean a little, don’t get too stressed about the appointment - it won’t help) time writing down your symptoms.
Try to attach rough dates and/or timescales to what you’ve experienced. This will give the neurologist something to help them. Meanwhile (I assume - maybe wrongly - that it’s an in person rather than a phone or virtual appointment?) their neurological exam will tell them more about your body.
Whichever type of appointment it is, try not to worry. Let us know what happens.
Sue
It sounds like part of your current problem is the MS hug. That’s where you feel like there’s a boa constrictor around your chest. As for the clothes, I went through a spell many years ago when I couldn’t bear having my skin touched by anything. Since I didn’t live alone, that was a bit of problem, but I wore the loosest clothing possible during that time period. Fortunately, it passed, but I haven’t been able to wear jewelry every since.
Hi LittleOwl yes some of it from anxiety which you are obviously experiencing.
OK the best thing for a visit to neuro is to just write down the main issues. If you go in with a list of odd things they switch off lol.
so what is the most important thing that is bothering you which got you to neurology?
for example. Mine was left sided weakness, and i couldnt feel my left foot, and had pains in my eye. Yes i had lots of other little things odd sensations creepy scary, but mostly for sure it was left sided weakness, left foot when walking felt like it was encased in concrete then other days like i was walking through wet grass with a hole in my welly lol.
i had blindness left side on 2 occasions.
so take a deep breath, when did it start, how did it start and only focus on the most important things.
I have had MS since 2000 but i think over that time i have only ever had the MS hug once (around my left side), yes i get days when i cant stand tight stuff as it makes me hot and heat exacerbates my symptoms. but they are not too troublesome. just nuisance lol, alongside so many other weird things too many to write down lol.
remember you only get so long with the neurolgoist and they need to really listen quickly, and if they think its needed will do the body tests, then if they find anything out of the ordinary will start you on the road to MRI testing.
so deep breaths, calm down and go get em…xxxx good luck and please let us know how you got in. xxx
I support the advice to wear loose clothing, without visible seams (like babies)
Hello, it was a lift to see the messages thank you . My appointment went well in that he was a nice man and poked and prodded and stuck me with a pin! He didn’t comment much but has recommended a brain and spine MRI within 10 days.
I wrote everything I could remember down and some timescales, that was invaluable advice. Although I forgot to mention the lead body suit which I am wearing today!!
I wouldn’t pass a sobriety test as my left finger missed my nose and I poked myself in the eye, I also wobbled on the walking heel to toe.
So I don’t know much more apart from the fact he believes it’s a brain issue. After the scan I will be referred to his neurology clinic.
I’m scared but feel better that I’ve seen someone and they may find out what’s going on.
But I do get angry, I’ve coped with abuse, rape, cancer, bankruptcy and the death of both my parents, my mum only 2 years ago. As I put my life back together I start to feel unwell!
My Dad once said to me that if we expect life to be fair then we lack the ability to learn and develop. Life wasn’t fair to him so whenever the Vodka bottle looks tempting I think of him.
And of course the people here who’s messages have made a real difference and stopped me whining!!!
AND I have puppies and sunshine and a lot to be grateful for.
Oh, puppies!
Sounds like you might’ve lucked out with your neuro. Getting the MRI scheduled so quickly is a good thing.
Oh wow he was a good neuro and took you seriously Littleowl. thats a great sign he wants to keep testing.
I am relieved for you. sadly life isnt fair is it. I lost my mum 2016 2 weeks before i got my diagnosis, and then in 2017 i lost my beloved husband of 30 years and am left in retirement on my own. i had to move from my big house and put in a sheltered accommodation which wasnt big enough and was moved again to this place. Now the physio is talking about me moving again to an adapted place.
the journey to a diagnosis can be long and weary but you will get there hun. have a good neuro from the start is a blessing. xxx
Oh Little Owl
You’ve weathered some of the worst things a human can and now you’re facing a neurological problem too.
Whether it’s MS or something else, clearly the neuro saw enough in the physical exam to warrant brain and spine MRIs. As the others have said at least you saw a human being. Some neurologists may not be!
And puppies
! Life with puppies is always better!
Sue