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New and need help

Hi all

I need help, I’m trying to get a diagnosis but at present I’m not getting anywhere fast … I had my fist episode 12 years ago after having my first son, he was 6 weeks old and I started getting headaches one afternoon I got very light headed and went for a lay down and after a few hours it wasn’t any better, so my hubby took me to the hospital where I was admitted, the following day I woke up not being able to see, compleat darkness… This lasted for about 6 weeks I had a cat scann and other test but they where all inconclusive so it was put down on my med docs as a psychosomatic disorder (which i wasn’t happy about) anyway it passed and all went back to normal. Until 2 years ago when I had the same thing again but for a much shorter period this time. Again I had a ct scan and they did find an inflammation which was put down to infection I was given antibiotics and again I sorted itself out. but in the mean time I’ve also had problems in the sex department and with pins and needles and stiff neck all at different times… I’m very confused as I’ve read so much now that you know what it’s like you convince yourself you have everything you are reading.
I’m not sure what to do next I don’t want to go to my doctor and say test me I’m a nurse and I know what it’s like when patents start telling you what they think they have wrong with them… But where else can I go? help please! am I going mad or is it likely I could have MS???

Hello Anon x Sorry but you are going to have to bite the bullet & tell you GP your fears!!! Did you have an MRI done? If not then you can ask for one as a CT scan will not normally show lesions x

and you don't get inflammation with a psychosomatic illness - so something is going on. Odds are it's nothing serious but you need to put your mind at rest x

List all your symptoms no matter how insignificant you think they may be & get nagging!!! happyflowerxxxjen 

Hi Anon. I really feel for you. Its awful not knowing whats going on with your body, but you really do need to speak to your GP in my opinion. Im not dx yet, but can now look back over the years and think of all the weird things I have had happen - my first 'migraine' at the age of 24 which put me in hospital for a week as I couldnt move. I was laid flat on a hospital bed, just had blood tests nothing else, and then when I was sent home I was told to lay flat.. which was impossible as I was a single parent with two babies! I coped, purely because I had to (and I do have a great family who always help out).  Then there are so many other strange things that I have had. Im 48 now and for the past 3 years I have been going to my GP and saying that I just dont feel 'well' and that I feel like Im running on 90% instead of 100%. I was dx with Fibromyalgia a couple of years ago, but I was never happy with that dx. I know there is something wrong with me, as I know my own body! These past 3 months have been the hardest ever as I have Optic Neuritis in both eyes, balance issues, numb patches on my face, legs and hands, my right arm twitches and jerks constantly. I get back spasms which I think may be the MS hug, and I have been complaining to my GP about a horrible pain in my left rib which seems to tighten then stop then tighten then stop. I was told I prob had a pulled muscle. Wasnt happy with that either. Now finally I have a GP who is listening to me, and an Opthamologist who took the time and effort to go through my medical history and finally told me he believes I have MS, and an out of hours doctor on Saturday told me he believes I have progressive MS or Parkinsons. Its a scary place to be here in Limboland isnt it. Im sure I speak for everyone else in Limboland when I say we all just want to know what is happening to us and we want to know sooner rather than later so that we can make informed decisions about our future and our treatment (if needed). 

I wish you all the best in this journey Anon (and all of us) and I hope you see your GP and start the ball rolling towards a dx no matter what it is. Forewarned is forearmed as my dear Grandad used to say :) xx

I'm with Jen.  I think you need to have a straight talk to your GP and share your fears and ask him/her to review things with you and recommend how to proceed.  I must admit, my jaw is still hanging open at the effrontery of somebody telling you that your blindness was psychosomatic.  Would I be right in guessing that some pompous arse in a white coat was spouting stuff about you perhaps 'having unresolved internal tensions and anxieties about your role as a new mother'?   Too bad a girl never has a machine gun handy when she needs one, isn't it?

Ah well.  I do hope that you can start to make some progress now.  If you feel there's something going on that needs to be got to the bottom of, you're probably right.   Something not serious, I hope, but it does sound as though you are at a point now when you really need to know.

Good luck with it all.

Alison

x

anon, please see your gp ASAP keep a note of your concerns and symptoms. you do need a ref to neuro cons and MRI with contrast for more info. I would ask your gp to make ref for both and not wait for neuro to make ref for MRI as it will speed the process up.

you may or may not have ms but the sooner you start the road to a diagnosis the better. you will get lots of support from here as many of us are on that road. I hope you have answers soon.

best wishes xxx

anon, please see your gp ASAP keep a note of your concerns and symptoms. you do need a ref to neuro cons and MRI with contrast for more info. I would ask your gp to make ref for both and not wait for neuro to make ref for MRI as it will speed the process up.

you may or may not have ms but the sooner you start the road to a diagnosis the better. you will get lots of support from here as many of us are on that road. I hope you have answers soon.

best wishes xxx

I have taken all advice given I have spent the last few days making a list of all symptoms that I have had over the last 12 years some input from the hubby was given and some symptoms I didn’t even notice have also been added… I have an appointment with my GP next Thursday. Let’s hope knowledge is power and I can make a good case!!! Thanks all xx