Hi everyone, this is my first ever post! I came out of hospital 2 weeks ago, originally went in with stroke like symptoms… had a MRI scan which showed 2 lesions, so went on to have a Lumbar puncture… still awaiting results of that! I had 5 days IV steroids, and the moment the doc said I should mentally prepare for a MS diagnosis I was shocked! Looking back over the last few months it seems to all makes sense. I have had a tremor in my left hand for month and the tiredness… my goodness the tiredness feels like your body is shutting down! Since leaving hospital I feel like my body is constantly being charged?! Almost like its vibrating?! And I get headaches like never before, crushing headaches that leave me unable to function, I just need to sleep them off! The feeling of not knowing what the results are gonna be and what the future holds is kinda rubbish! Im sure there are plenty of you out there that know exactly what im feeling… im 29 with 2 children and a full time job thats quite heavy going… so many worries! Sorry for the long message but it feels good to express my concerns with people who know exactly how im feeling! Thanks guys Whilesy
Hi Whilesy, sorry your having such a hard time at the moment. Limboland is not a good land to be in and the diagnosis when it comes whatever it may be is usually a shock but a relief too as you at least know there is something causing all your pain and problems and it’s not you going mad. Hopefully if you do have MS they will start you on DMD’s as soon as possible to try and get your symptoms under control. It is a hard and long road filled with a lot of lows and a few highs when you get stuff under control and may well feel like your old self again for a period. I wish you well. Lx
I was admitted two years with stroke like symptoms had all the tests most of which came back normal. It was only this year that I was diagnosed after ticking all the boxes. Am on meds that control most symptoms, also to help to control my bladder which had decided it didn’t want to behave anymore!
The fatigue is what I find one of the hardest things to cope with, and am lucky that I have a strong family. Have three daughters aged 14, 12, and 10. They do most of the housework and even cook. My oldest does all the ironing, I’ve not done any in months!
Limboland is not a nice place to be, but once they make a diagnosis I am sure you will get all the help you need It,s important to stay positive, and talk to people.
This is a great place to start everyone on here is really friendly and always have the answers to evrything I have asked!
Just a thought - the headache could be the resul of the lumbar puncture you had! Did they warn you that that was a possibility? Teresa xx
Limboland is miserable - from first symptoms to diagnosis for me took 10 years. In the end I diagnosed myself by reading books in the library (bg =before google!) Went to Dr before my scan and told her my thoughts, she confirmed that’s what she thought too.
Diagnosis was a relief - I wasn’t going mad.
Look after yourself and rest as much as you can.
Know there’s a limboland forum but this is a better forum as people with MS are on it.
Teresa could be right when she says that the lumbar puncture may be the cause of your headaches. When I had my lumbar puncture over 16 years ago I suffered the most horrendous headaches for a few weeks due to spinal fluid leakage. Best thing I was advised to do was to lie down - headaches mostly stayed away then.
I had to take two weeks off work till headached stopped
Thank you so much for your replies everyone. Spoke to the hospital again today and LP results are still not back. Im currently still off work and havent attempted to drive as still walking with the aid of a stick im really struggling today, feel like I have completely lost all my independence. My partner doesnt seem to understand, he thinks the answer is to wrap me in cotton wool! I want to go back to work next week, just for a few hours a day to ease myself in, im lucky enough to work for my brother so im under know pressure at all to return full time straight away. I just cant seem to get through to anyone though that I need to keep busy rather than sit and wait for the diagnosis! My first neuro appointment isnt till 10th Jan … my partner thinks I should stay off until then!! He is over reacting right?! Im also having to stay with my mum at the momebt as its within walking distance of my girls school… I feel like im going mad! I just want my life back! Or at least to know what my future holds! Rant over haha! Thank goodness I found this site with all you lovely people who understand! Keep well everyone and thank you again
And still no LP results ill be phoning again tomorrow to nag the secretary! Work xmas party on saturday… not sure im ready for all the questions! I work with a load of mechanics and everyday is full of banter with them… I just know my walking stick will provide them with lots of ammo for mickey taking… unfortunately im feeling so low im not sure ill be able to laugh it off! Oh well, it’ll be good to see everyone after being off for nearly a month. Hope everyone is keeping well Sian