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Newby saying Hello

Hello Everybody

I have just signed up after many months of reading posts and just wanted to say Hello to start with. I am undiagnosed and currently undergoing tests and I don’t know even if I have anything like ms but the symptoms point to some sort of neuro problem, possibly a neurodegenerative disease as that is what the neuro put on the bloods slip! Anyhow, will post my story so far next post, just a hello for now.

Cathy

Hi Cathy Nice to meet you. This is a great place to talk to like-minded people. Please come back and tell us your story. See you soon, Teresa xx

Hi Cathy

You’re in exactly the right place for support & advice. I’m still undiagnosed as yet too, but have learnt so much from the folk on here & they have been sooo supportive.

So, do keep joining us - we’re here for each other & many of us are in exactly your situation.

Take good care

Bren x

Hello Cathy and welcome to the site :smiley: Karen x

hi cathy

welcome, this is a great place for support and help and sometimes its just nice to have a good old moan.

ive been ill for 7 years and have had diagnosis of fibromyalgia, likely ms, ME/CFS and now i have the label “its all in your head” but im still fighting on.

i dont know how i would have managed without this site its been an absolute gem for me!

please let us know how you are.

love mandy xxx

Hi All,

Thanks for the welcomes, I will post again with my ‘progress’ so to speak.

oooo… I do love smileys LOL!

Cathy

Hi and welcome…I too am new. I have loads of symptoms…and am going to see my Rheum Consultant on Fri. and I have an appointment with a Neuro in two weeks. I feel like I am wishing my life away…but the Neuro appointment can’t come soon enough. …I feel rubbish every day…although the symptoms change sometimes. Arrrrrgh…!

Hi Cathy and Claire, lots of support on here

Vince

[quote=clairex]

Hi everyone,

This seems to be the place for new comers so thought i would start here. I dont know what is wrong with me yet. I went for an eye test last week as my eye sight had deteriated and the optician found i had inflammation on my fibre optic nerve, i was then told to go to my doctor immediately which i did who then told me in his words “i want to be open and honest you with i think we maybe dealing with MS” i am waiting to see a Neurologist in the next couple of days.

Im in shock and i dont know what to think. After researching MS i have decided two things, 1 i cant believe my doctor suggested MS without me having more tests and 2 the symptoms i have had over the last 3 years could make sense. I have gained 4 stone in 3 years from a size 8 - 14/16 and along with this weight gain (or so i thought) came numerous aches and pains specifically in my back and tops of my legs and knees, extreme fatigue, depression and anxiety, dizziness and toilet problems. I put everything down to me gaining weight and feeling really sh** about myself. I didnt go to the doctor about anything apart from the depression and anxiety as it started to scare me more than anything. I have also had hyperthyroidism on and off over the last 6 years it is however stable at the moment. The anxiety and depression has got worse over the last three months and so has my concentration levels, i was / am doing an OU course and cant concentrate long enough to study reading is really difficult - hence the eye test lol. So now im here not knowing whats the matter and feeling very scared. Im a single parent to a beautifull 9 year old little girl. Im feeling very alone. Sorry to be so morbid.

Any messages would be appreciated right now.

Claire

x

[/quote

hi claire

welcome to the site, its great here for support and help so any questions just fire away and someone will try and help

i dont really know whats worse, if the gp gives you an indication of what they think is going on or if they just tell you its nothing to worry about!

i do think though that the majority of gp’s do whatever they think is best for each person, wether we agree with that or not is another matter. maybe he did think about it some time previously in your history and now he thinks that its time to give you an indication.?

personally i would rather be told of there being a possibilty rather than be told there’s nothing wrong with you or similar.

having said that it does need to be a neuro who diagnoses it and they will only do that if there is enough evidence, they have to follow the “mc donald criteria”

if you google that you will see what i mean, its not just about going to the neuro and he tells you that day, it can take a long time to get formally diagnosed.

i know i had no idea what ms was about i think people straight away think about being in a wheelchair when thats far from true for a lot of people.

i have been ill for 7 years and have had diagnosis of fibromyalgia, likely ms, CFS/ME and no i have the “its all in your head” label but ive been ill for long enough to know that i am actually ill and one day i will be able to prove it.

there are drugs that help too, but its just about you giving yourself time to get your head around it and maybe it could be something else entirely, i know its been said that a lot of other problems have symptoms similar to ms, so dont be too hard on yourself.

please feel free to message me if you feel you need to.

love mandy xxx

Hello and welcome to you too Claire

Your GP is right in that optic nerve problems often happen in MS, but wrong in that they also happen in other things and even on their own. So, as you thought yourself, it really is too early to be thinking it is MS.

The good news is that you’re on the right path. A neurologist will give you a clinical exam and, depending on what he/she finds, order various tests (e.g. MRI). The whole process can take a while, so be prepared for a bit of a long haul. If it turns out to be quicker, well then that’s a bonus!

You don’t need to wait until diagnosis to get some help for your symptoms though. There are meds for all sorts of things these days, so make sure and ask your GP and your neuro for help.

Karen x

hi claire

i think a lot of us do try and put things to the back of our mind or just put it down to ageing, i think women do generally “just carry on”

i think the advert on tv where it shows two women with flu doing the shopping, as well as getting ready to do a presentation for work, decorating the bedroom (ready for guests) and looking after the kids, all while their hubbies are in bed with a cold is actually quite true in my experience. (sorry guys)

its only when it gets too bad to be ignored that we sit up and listen.

best wishes

mandy xxx

It’s a good idea to take a list of symptoms/events with you to the neurology appointment. Try and keep it concise - detail can be added verbally, if needed. Do not hand the list over to the neuro. The list is for your benefit. You can give the neuro a copy at the end though, to go into your medical file.

Take a written list of questions too. No matter how well prepared and organised people are in “real” life - it tends to go to pot in front of a consultant and things get forgotten!

Google Polman et al 2011, Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria to get the most up to date version of the McDonald criteria.

Please don’t feel remotely guilty about posting on here! You are precisely the sort of person that this forum is designed to help.

Kx