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PAIN!!!

Anyone else suffering stiffness in the fingers and hands and pain in arm with a tight band at the top? 

Poppy

I had a tight painful band round my wrist last september. My fingers also cramp occasionally too.

Reemz

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oh really? i seem to get a tight band at the top of my  right arm, feeling like when your having your blood pressure done? or like a belt? Have you been diagnosed?x

 

No - no diagnosis yet. Been in limbo for the last 8months. Neuro (who is a * - sorry!) says I've had an episode of spinal inflammation and won't say much further than that. Waiting for NMO blood tests results (I think it's unlikely as no optic neuritis just trigeminal neurlagia and spine issues).

Supposedly the band sensation is mean to be a bit like the hug you get round your waist/chest which I've also had but people can also get it on an arm or leg. I can relate to the blood pressure taking feeling. My wrist pain was so bad I was convinced I'd broken my elbow/wrist perhaps (I bashed it on the tube 1 month before). The X-rays found nothing. Looking back I think it was related- co-codamol wouldn't shift the pain even.

Where are you at in the diagnostic stage?

Reemz

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Hi Poppy - read this thread and see if this is what you mean or if it helps at least: http://www.mssociety.org.uk/node/639258

Dx

Thankyou Deb, yes that is exactly what i mean! Atleast i know im not going mad and it is actually a symptom! Oh really Reemz? I'm in limbo to, was admitted into hospital 4 weeks ago because i couldnt stop jerking (mycolonus) didnt know what it was at the time and i cudnt walk. Had mri on brain and spine, xrays, blood and now waiting for neuro appt. So what does ur neurologist say about the band and other symptoms? he cant jst ignore them. My mum has MS and our neuro has been exactly the same u must fight and fight, keep ringing, keep asking until they help you, trust me its the only way. It gets tiring though and especially now with me feeling so unwell constantly. Do you ever just feel unwell but cant explain it but know u feel poorly in some way? Oh and yes co-codamol doesnt help with the discomfort/pain either so your not alone with that either. 

 

Poppy xx

Hi Poppy

It's scary to think your body can just suddenly go wrong isn't it.

I can definitely relate to a general feeling of unwell. I go through bouts of being absolutely shattered and craving lots of sleep and its very hard for people not in the situation to understand. Or worst is I feel a bit off balance and I can't explain. It's almost like if I move my head too fast it feels like I've moved loads - sounds stupid I know. I try not to over do it as I know if I do'll end up regretting it afterwards.

The neuro is terrible doesn't explain anything about my symptoms and just brushes it all aside. I had my fourth review since my offcial epsiode of symptoms in october and he just said I think things are great just get on with it and ignore but tell me if anythign gets worse. (My MRI's have shown non-specific subcortical lesions last 2 the same). I felt like bashing him across the head as I'd emailed him as I'd had facial pain and jaw spasms so what seemed like trigeminal nerve symptoms and had been sturggling though by the time my review came my symptoms were subsiding. I've spoken to my GP and am now waiting to be referred for a second opinion to another neurologist. Fingers crossed they actually listen - if I'm honest I suspect things started way before my first obvious problem.

Have you had your MRI results through? Hope you get a good neuro.X

Reemz

X

Yeah i know all those feeling exactly! It doesnt sound stupid at all. I thought id do some cleaning and now ive sat down it feels like ive got a drill going through me like tremors :(. So yeah i also regret over doing it to!

I would definately get yourself a second opinions, with my mum weve had an opinion from northampton (waste of time) Oxford (waste of time) and London (semi good) haha doesnt sound good but u might have a better going on, weve had a nightmare time with them but everyone is different so dont give up. the brain MRI came back with no lesions and i suspect my spine one will to but that means nothing!! I know many people with MS whom are in a very bad way now whom started of like us and the mri's showed up nothing. So always argue that with your neurologist, they havent got far enough with technology to actually be able to diagnosis through tests alone. It has 2 be mainly symptom based.

I ended up at kettering hospital so ill see what this neuro is like fingers crossed!

I hope you get some sort of news or some sort of progress soon, sounds like you've had a bad going on like many.

just remember you've got us guys and keep you chin up :)

 

Poppy xx

Oh no Poppy - yes definitely take it easy. My last episode of symptoms (TN) I initially thought was pseudo bacuse I had over done it. Unfortunately not as it continued for 3 weeks.

My first neuro opinion was with a central london hospital (he's an MS specialist) and now my second one will be with another neurologist based in central london but different trust. My neuro has labelled me as spinal inflammation based on symptoms (though spinal MRI was normal and TN is not spinal). 

This forum is amazing - don't know what I'd do without it. Hope you get some answers from your neuro in kettering. Keep me updated - I'd love to hear how you get on.

Feel Better soon.

Reemz

X

Oh we are actually all the same. I totally feel like an 'ill' person. My skin feels 'ill'. Poppy, I also had unrelenting myoclonic jerks which landed me in hospital in December. They've gone way down to not many a day since then bar a few episodes where they have whacked back up again for a week or so. They only happen mildly at night at the moment or when I'm resting on the sofa. My feet, legs and pelvic area buzz like mad constantly like I'm a bottle of fizzy lemonade! My right foot burns madly too and my muscles in my right leg and right arm twitch with a life of their own. My right arm has that 'tourniquet' feeling. I'm not sure how we're just supposed to just 'get on with it and ignore it' and cope with all this as if it was normal!!

Poppy, who did you see in Oxford? I'm going there on 9th July for a 2nd opinion from a more knowledgable neuro 'jerk' professor on order by my own neurologist. 

Thinking of you both lots and sending hugs

Dxx

I meant to say my muscles in my right leg and left arm twitch with a life of their own. My left arm has that ‘tourniquet’ feeling.

I never was very good at left and right lol!!

Aww deb very much the same as me then!! that includes the left and right business haha. I'll see if i can dig out the letters from oxford for the neuro's name. What doc are you going to see? You look after yourself and keep me updated on how you get on at Oxford. Sending lots of hugs back sweet!! xxx

 

Reemz Thankyou for the chat, ill keep you updated please keep me updated and as i sed before keep pushing. Look after yourself and hope you get some answers soon. Keep your chin up and my fingers are crossed you get some relief from it all soon xxx

 

Definitely will keep you updated. PM me whenever you feel like a chat. Just saw your message about the hug - it really scared me when I had it. Mine lasted a week but was very mild pain and awareness in a band to begin with then progressed to difficulty taking a deep breath like I was being squashed by a boa constrictor - i almost took myself to A&E. 

Get well soon and keep in touch

Reemz

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