Skip navigation
MS Society
  • Translations
  • Contact us
  • A-Z
  • Donate now
  • Login
  • Register
Welcome guest
  • Normal
  • Muted contrast
  • High contrast
  • Low graphics / Text only
  • Home
  • What is MS?
  • MS support
  • MS news & research
  • Near me
  • Get involved
  • About us

Home » Forum home » New diagnosis and before diagnosis

Just Need Some Advice/Reassurance

8 posts / 0 new
Login or register to post comments
Last post
Just Need Some Advice/Reassurance
Author
Post
cherryXbomb
26 May 2012 at 2:43PM
Top

Hey everybody. Hope everyones keeping well. Couple of months ago, probibly about 4 or 5 now, i started experiencing extremely strange symptoms. I was in the library and went to take something off my wrist and it was if my hand just froze, it was ok after a while but the feeling of stiffness intermitently rears it's crappy head on and off. After the initial bout of stiffness the shaking started, first night was the worst, after that ive had shaking in both my hands,and toes.....worse when i try to put my fingers together and worse when i bend my toes. Sometimes it makes typing more of a chore, i can still hold a pen but fiddly stuff can be a pain in the [filtered word]. My lower back also shakes when i bend over, i don't know how visibly noticeable it is, ive tried assessing that myself in the mirror to not much avail. Also when i bring my legs up high and put them back down theres shaking in the hip/thigh, also bit of shaking in my ankles which makes going down the stairs a total joy, as you can imagine. I'm on absolutely no meds, stopped taking propanalol a couple of days ago(which i was presceibed for migraine profylaxus -thats absolutely not how you spell that!- because i want to keep a clear head for uni exams, at my peril. My arms have felt extremely weak and so have my legs but the last two days i havn't felt quite as bad, the week before was a COMPLETE catastrophe, just felt like crying every morning because i knew how difficult the day was going to be. I'm going to my neurologist soon and hopefully will gleam some answers from him....ill shake them out of him if i have to *boom boom chiiiish*. My back is also in complete agony most of the time but seems alright. Lots of pain in other places on and off as well. I think all these symptoms may be related to MS as i have had the pain for a couple of years maybe, used to be in my abdomen for a while, there was a year where i had an onslaught of constant UTI's and bouts of crippling cystitus, which eventually just disappeared (WTF! however i didn'y question it i just counted my blessings and got on with things. These shakes however is driving my absolutely insane as well as the intermitant weaknesses. When i look back on my symptoms it suprises/infuriates me that the circus of doctors i visitied during the 2 year period i was desperately ill didnt send me for tests perhaps realting to MS. Can anyone share some of thier stories, comment on mine or just give me some kind of inkling at what i may be experiencing. Thanks for your help.

cherryXbomb
26 May 2012 at 2:45PM
Top

Also have only had one maybe two at the most of where my hands have seemed to stop shaking but they seem stiff when they do. Just started back up again though *sigh*.

choochy
27 May 2012 at 8:07AM
Top

Hi there,

Sounds like you've been through the mill a bit. You sound a bit similar to me - suddenly a whole bunch of symptoms and no idea why. If I could go back and give myself advice, the main thing would be, write it ALL down. Get a timeline going, because when you see a neuro (if they're anything like mine) they will fire rapid 'symptom' questions at you, one after the other. So, be succinct, write down dates, symptoms, effects, etc. Study it before you go in so you can answer quickly. I'm very grateful to my neuro but if it's one thing I learned, I was just a walking bunch of symptoms, not a real, live person with feelings and fears and anxiety. Guess that's where the MS nurses really come into play.

Your symptoms are scary and it can be a really confusing time - believe me, I've been through hell this last year. I was absolutely fine, then BAM, everything went wrong and it's like your mind can't catch up quick enough. You just want answers and SOON. The hardest thing is that the diagnostic process can take so darned long (I knew nothing of this at the start) and often you have to wait until you get worse to get a diagnosis.

But you're in the right place here. Everyone has been fantastic and supportive to me, so keep coming back, even just to have a good old moan. I know I did, lol.

Choochyx

rubina
27 May 2012 at 10:25AM
Top

Hi Cherry and welcome happy2

Looking back I've had various symptoms for years but I just didn't realise they were all connected.

But one day - just before Christmas several years ago - I was in a shop, my back & feet were killing me and I was having trouble walking. I tried to pick a book up off the shelf which was difficult to do, but when I did manage too my hands just went into some kind of spasm and I was hurling this book up in the air like a set of juggling balls - eventually it landed on the floor. Throughout the whole thing this guy was just standing there watching me. I was so embarrassed that I just left the shop.

I had an accident some years before which resulted in an operation but I had other injuries which no one seemed to be able to help me with and I just assumed it was all to do with that. So I booked to see a chirpractor. He helped me immensley with my injuries but one day he sat me down and asked me to tell him everything!!

I was a bit stunned that he'd noticed so much to be honest! So for the very first time I spoke of all my symptoms and from that day on he worked on me to make an appt with my GP for a referral to a neurologist. In the end I did and 6 months later I was dx with ms. Exactly as my chiro and GP had suspected I would be.

It can be a rocky road to finding out what's causing your symptoms which is something that I don't think many people are prepared for. I wasn't. There are so many things that could be responsible and so many conditions that have similar symptoms that it's best to try and keep an open mind, because they all need to be ruled out which can take time.

As Choochy has said - keep notes. Brief but concise ones, starting with your main symptoms. Take them with you to your neuro appt. and go from there. One step at at time.

Try not to freak out too much, your symptoms could easily be something simple and easy to sort out and don't forget there's always someone here who can offer a listening ear or a bit of advice & support - which is one of the fabby things about this site thumbsup 

Good luck & let us know how you get on - Oh, and sorry about the long post too....LOL..

Debbie xx

cherryXbomb
27 May 2012 at 2:47PM
Top

My eyes feel like sand paper today and my tremors are really freaking me out. To be fair they could be getting worse as a result of the evil triad i've semi-inflicted on myself, Heat, Caffeine and Propananlol withdrawl, exam-o-rama. However i'm still freaked and now my face is going all twitchy, again this may be a result of me sometimes going over my notes and squinting, occasionally but i don't think it is. Does anybody else have problems with a-symmetrical tremors and a tremor in the lower back, plus burning sensations on skin and some fascillations.....or am i just as mentally unhinged as i sound?

cherryXbomb
27 May 2012 at 2:53PM
Top

p.s. Thanks for all the positive comments guys. Just need to hold myself together until diagnosis, which hopefully won't take as long as these symptoms did to group together to form the ultimate task force in torture

.  

cherryXbomb
27 May 2012 at 2:56PM
Top

p.p.s!!! i meant symmetrical tremors, ah duh.

 

choochy
28 May 2012 at 4:55AM
Top

Hi Cherry,

I really do sympathise with you. It can be a horrible time, not knowing what is wrong, just knowing that something IS wrong.( I'm on steroids, hence early post! )

Sounds like you're having such a hard time. Funnily enough, it was my chiropractor who 'diagnosed' me first! Hang in there. Read up on the McDonald criteria for diagnosing MS, it's the gold standard and most neuros stick to it, as mine did. It can be difficult realising you have to sometimes get worse before you can have a diagnosis,. i.e. wait for a second relapse.

Anyway, hope things go ok, let us know?

Choochy.x

» Back to New diagnosis and before diagnosis forum
‹ Previous topic: I don't laugh as much..? Next topic: How much more :( ›

Free MS Helpline
Phone: 0808 800 8000
helpline@mssociety.org.uk
  • Facebook
  • Twitter
  • Youtube
  • Accessibility
  • Contact us
  • Cookies
  • Media
  • Privacy
  • Terms of use

Multiple Sclerosis Society. Registered charity nos 1139257 / SC041990. Registered as a limited company in England and Wales 07451571

Fundraising Standards Board

Designed and developed by Precedent