I'm back, and need to lose 2 more stone. I MUST I MUST.

I saw the pictures on FB and you were absolutely stunning! Just as we knew you would be x
 
Oh elle, how absolutely lovely darling.
 
Folks you are too kind! :) The wonders of a corset. However, it seems stress is the best weight loss fix for me - I kept scoffing rubbish and losing weight! Problem was, the corset on my dress couldn't be tightened enough in the right areas so it started dropping, caught me around my waist and left me with a couple of cuts & bruises, as I was sort of dragging the weight of the dress in that area. I felt like My Big Fat Gypsy Wedding when I took it off!! xx
 
Corset be damned, you looked stunning love
 
Fabulous - shame about the cuts and bruises x
 
How is everyone? OK?

I am so shattered, and a wee bit scared. My symptoms are getting worse and I have this awful feeling of inevitability that whatever the doc says (I have a appointment on the 22nd June regarding my lumbar puncture of the 1st Nov 2010! That's the NHS for you) it's going to be 'we can't be sure'. Is it best to know, to have a final answer? The things is, they are testing me for multiple sclerosis, which a few years ago I thought, pah, please, that's not what I have. But now my symptoms are getting worse and when I search them they get described in awful ways like 'the MS hug' 'spacticity'. They've found evidence in my spinal cord but thankfully not scars in my brain as of yet - which I hope never happens. But I'm really struggling - I have a tightness around my chest/waist that can sometimes be redundant and sometimes feel like it's constricting my breathing so badly that Chris keeps trying to take me to hospital as he panics. I'm struggling to walk lots at the moment because I have this awful tightness around my knees and upper thighs. I've stopped going to Zumba because my legs would literally stop moving half way through and if they were, I just couldn't keep up with the music (and not to blow my own whistle but I normally love dancing and it comes naturally to me - to follow steps and dance to the rhythm) My muscles keep sort of contracting, especially in my sleep, and waking me up - i'll sort of wake up with my legs totally stretched out, or I'll get cramps. In the morning I literally feel as though my waist and legs are chained to the bed.

Grrrr. I don't know what to think. Sorry folks, didn't mean to put my miserable mood onto the forum. xx
 
{{{elle}}} I'm so sorry to hear about your health problems love, I hope it can all be resolved.
 
That sounds awful Elle. I hope it's not MS and there is a simple solution for you x
 
Thanks Taz:) One of my bridesmaid's brothers has it and we were having a chat last night. We have exactly the same symptoms, which is mental, only they found scars on his brain. Poor lad. I thankfully don't have any on the brain, hence the non-diagnosis, just something going on with my spinal cord, although this too can mean MS. If they haven't found anything with this lumbar puncture then I'm guessing that they might send me back for another MRI, probably nearer to Autumn time. Whatever they say, I need to get to the bottom of it, as, for one, I was refused life insurance due to the fact that I was being tested for MS. Which is a bit annoying. But they pay off your mortgage were you to get it so I guess if it does turn out to be that, more fool me for not sorting it out sooner. Lol..
 
Morning elle, it doesn't sound nice at all, I hope they get something sorted gor you, and quickly at that love
 
Oh Elle - what a worry it all is.

First I need to say that if it is MS it is important to get it diagnosed sooner rather than later. I know people with MS and mostly they "manage" it well. The girl at work that has it brought her new baby in today - she has been off her medication for 2 years while she's been trying for a baby and, yes, it has got worse - but now she is looking at trialling the new drug they have just licenced which could make a huge difference.

Secondly I have to say that many of those symptoms could be other, more mundane things and may not actually be your worst case scenario.

I hope you get the answers you want and that you can move on with your new life without the hassle of illness or disability.

One thing I have noticed about the people I know with MS and other such things is that they are determined to live as normal a life as possible and, on the whole, they achieve amazing things.

(((Hugs))) and love and loads of good vibes coming your way x
 
Thanks Gem, you always know the right thing to say :) xx
 
Thinking of you as always Elle. Hope things are going well x
 
Hi Elle - new to the forum, so just looking for inspirational piccies, to motivate me and landed on your thread. Not found my way to your photos yet either!
I have HMS and many of the symptoms you describe, I was in a wheelchair for two years, and in bed for one!! I have had loads of tests, inc brain scan etc , and have been given various diagnoses, including Hughes' Syndrome, Mixed Connective Tissue Disorder and Inflammatory Arthritis. I used to feel that getting a diagnosis was the most important thing, so I could deal what was wrong and take the medication and be cured. I know feel that I just have to manage my symptoms, pace myself and take gentle exercise and eat sensibly (not always possible). I am sure you are worried about the test results, and hope that you get a positive outcome, but try not to dwell on it too much, because stress can make you feel worse.
Sometimes not getting any definite feedback is worse than getting a diagnosis, cos you can't really tell anyone 'what it is' and then get a very mixed reaction, from loads of support and sympathy, to people who think you can snap out of it, and its all in the mind, or they know a cure they found on the internet.
Keep me posted, and bug hugs for you , I can imagine how frustrated, worried and uncertain you must be feeling.
Now I am off to try and find your wedding photos!! x
 
Hi Jainw, I have HMS too! I know what you mean about the lack of understanding, I usually just say I have a connective tissue disorder which basically means my joints are f***ed! If they still look confused I usually demonstrate with my knees and they soon get the picture :D
 
Jain and Taz are right - it could be all sorts of things but whatever it is has to be managed and dealt with - I'm sure you are more than capable of that Elle x
 
Oooh, hi there! A new reader. How are you doing Jainw? Lovely to have you.

Well, yeah, I guess I need something solid. At the moment, I'm the member of the family getting odd symptoms. She doesn't complain much, but wishes people would ask her how she's feeling once in a while. I feel perhaps that nobody takes me seriously because I have no diagnosis. Maybe I'm just feeling sorry for myself but it's difficult to explain to people about why I struggled to get out of bed this morning "oh, I know how you feel, you just need more sleep". NO NO NO. I HAD 8 HOURS. I FEEL LIKE IM CHAINED TO THE BLOOMIN' BED. THIS IS NOT THE SAME THING. MY LIMBS FEEL SO WEAK AND FUZZY LIKE THERE'S AN ELECTRIC CURRENT IN THEM. Unfortunately I'm not one for confrontation lol so I just nod my head and move on.

So what does HMS mean then? And what's the prognosis? xx
 
The spoon theory sounds a bit too dramatic for me. Yes, I often find myself struggling, but there is no medicine that I have to take and I don't sound anywhere near as bad as that poor woman. Each day is different - some days I may have to count in 'spoons', but other days I'm ok. The worst days are the ones that start with me unable to get out of bed lol.
 
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