Hi all - I can see most of you are suffering in this weather and want to send big hugs. Personally, I love the sunshine but (coincidentally??) I had to be sent home from work on Tues and had to have a couple of days off feeling pretty rubbish. I’m still in limboland so maybe nothing to do with the heat (she hopes!)
Anyway, I want to ask those of you with MS if you ever feel as if you have a tourniquet around the top of your arm/shoulder stopping the supply to your arm making it ache/heavy/weak etc? I’m moving my neck around looking like a mad fool to try to release something but that something may not be there if it’s neurological!
I’d just like to know if this is a normal feeling in neuro things/ms or if indeed I need to ‘release’ something pinching my nerves - I see a chiropractor regularly to have my neck clicked so ought to be ok but my arm is driving me nuts.
Thanks in advance,
Gosh I get this type of feeling in my left arm,it feels like someone has cut the supply of blood off and pain.Yes numbness and a sensation go with it.I also get the feeling in the left breast and under my armpit worst of all.
Many of us are suffering badly with this heat and I am one of them.Symptoms are worsend…
Yep I get this too, more so in my arms which then causes weakness.
Mention it to your neuro when you see him - and also to your chiro. Does your chiro know that you’re under a neurologist?
I have to say that my chiro is fantastic - he’s my God LOL. It was he who I first confided in, telling him all of my symptoms. He worked on me until I eventually gave in and saw my GP about it who then referred me to a neuro. And the rest is history, so to speak!
Hope you’re feeling better
Thanks for your responses - yes it feels exactly as if the blood supply is cut off!
I laughed at ‘he’s my God’ - my chiropractor is also fantastic and key to my confidence about voicing my instinct that this is not functional as the neurologist believes. Chirogod says to not accept that as a diagnosis as he’s known me for 14 years and he truly believes it isn’t functional. Along with my GP thinking the same I’m all a muddle! What I’d really really like to work out is how the symptoms differ so I can be knowledgable without seeming like I ‘want’ or am ‘looking for’ ms - I don’t want it at all, I’d rather it was functional because that can get better but I just don’t believe it is - does that make sense?
Before my official flare up of symptoms started last Oct I suffering with a tightness round my wrist and extreme pain. I even took myself to minor accidents as I’d bashed my elbow a month before and kept thinking maybe I’d broken it. I hadn’t! Now it makes sense it was probably the same as what you guys are describing. I was taking paracetmol and it just wasn’t helping - no wonder!
I get the ‘tourniquet’ feeling in my wrists and ankles. Its funny isnt it that when you look back over the years there have been so many ‘minor’ weird things going on that you dont mention to the gp as they seem so kind of trivial. Ive actually been going to my gp for the past 3 years telling him I just dont feel well, that its like running on 90% and that I feel like everything that is going on are strange things… Ive wrote symptoms down on a piece of paper and handed it over so many times (cos I forget everything otherwise!) and never really felt listened to, to the point that i have said to my gp that its not that i want to be at the doctors every month with some other weird thing going on, and its just that all the previous weird things are all still there too, but that there are now other things going on as well. My gp deals with only one thing at a time, and kinda ignores everything else i previously mentioned. Luckily i now am with a gp who is attempting to deal with everything and whilst I am not dx, I am really hoping to get some answers now. Good luck to you all xx
I laughed at ‘he’s my God’ - my chiropractor is also fantastic and key to my confidence about voicing my instinct that this is not functional as the neurologist believes.
I’m glad I made you chuckle…lol…
I’m sorry, I have a brain like a sieve at times and can’t remember how far along the diagnostic process you are?
Presumably as your neuro has mentioned their all time favourite word - ‘functional’ - then nothing has shown up so far in tests etc?
You already know that diagnosing something like ms can - for some - take a while because so many things need to be ruled out along the way and therefore a dx of ms doesn’t necessarily come easily or quickly.
As symptoms vary for all of us - not just between each of us but also as individuals too -maybe keeping your own diary is the answer to you having some kind of ‘tracker’ of your own symptoms. The only thing I would suggest if you do this, is to highlight the main, persistent symptoms and differences for when you see the neuro - summarising it.
There’s lots of info on here and the ms trust website - in fact only last week I found a ‘spasticity diary’ which is included in the booklet Spasticity Triggers (ms trust), which you can download as well. It’s broken down into 6 stages throughout the day and designed to help nail down your own particular triggers of spasticity. Maybe you could do something along a similar vein.
It’s sometimes a case of chipping away at it until enough evidence is gathered for your neuro to be in a position to give you a firm diagnosis of some kind, whilst at the same time keeping an open mind to other things - which isn’t easy.
Does that help Deb?
Hi Debbie - yes that’s really helpful actually to suggest looking for triggers. It’s pretty permanent the last week, legs feel like I’m recovering from running a marathon (as if, lol). Also highlighting the main persistant ones is good advice. Thank you.
Yes indeed my neurologist has mentioned the famous functional word because tests are clear. But even he can’t be that sure because he has voluntarily, without me asking referred me to a more knowledgable professor at the JR for a second opinion! In fact he said “hands up, I’m not sure”. So my next appointment is 9th July with said prof.
I’m really trying to work out logically what is different from functional and MS and looking for any tell tale signs either way. There are lots of the things on the functional website that just don’t fit with me whereas, all along, ever since my first major attack in Nov/Dec, so many people on here with ms respond ‘yep, that’s exactly it’. I’m not being silly about it, I know I don’t know so much about functional or other mysterious things but having a GP who was ready to diagnose me as well gives me a gut feeling about it (whatever that’s worth).