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1 year on!

As Im lying in bed wide awake with muscle spasms listening to the other half snoozing away I have just realised the tomorrow (11/06) will be one year since I was diagnosed! I remember going to my GP about 3 years ago after feeling like I was going to black out while talking to a friend in Asda and walking and talking like I was drunk for a few weeks. When I went to the doctors the GP asking me what I thought was wrong… When I told her I suspected MS she told me it wouldnt be. After 2 years of threatening to go private if I wasnt reffered to a neuro, MRIs and neuro appointments I proved her wrong (its just a shame she retired before I had chance to say I told you so). I remember not getting much sleep the night before the appointment I was dx, being up at 6am the day of my appointment and cleaning the kitchen top to bottom before my parents picked me up to take me for my appointment. I remember sitting in a tiny room with a neuro I hadnt met before with my parents and being told I had MS. I wasnt given any info just that an MS nurse would be in touch! Just wanted to share my little dx story and would be interested to hear other peoples and what made them realise something was wrong. Sam xx

Hello Sam It will be a year for me in august, seems to have passed so quick. Having MS never occurred to me, I was referred to Neuro for headaches/migraine. It was quite a shock. I put other problems down to another condition I have. I don’t have a Neuro or MS nurse so beside my lovely gp, this forum is my main support network. My family and friends also :slight_smile: Sorry to hear you had a gp who wouldn’t listen to your concerns. It’s probably good she’s retired. I hope you are getting good support. Take care x

I had symptoms going back a number of years, clumsiness, unexplained falls, even double vision which lasted several months. Only to be told every tine I saw my GP there was nothing wrong. I quite liked the ignore it and it will go away approach, but I knew there was something wrong, just not what it could be. Finally when I started having problems with dropped foot and walking I was referred to a neurologist, then after MRI, which gave probable diagnosis, EVP the results of which never actually found their way to my record, and lumbar puncture which was inconclusive, and a wait of about a year from referral, the neuro said, “you have ms, there is no cure and no treatment” he then dithered a bit about whether it was PPMS or SPMS, before settling on the latter. I’m still not sure which it is and doubt whether he is either. I asked him what I could do to help myself, which brought the response, “Avoid heat, avoid exercise, avoid stress, and if you get an infection get it treated” I felt like I’d been told to go home, sit down and wait for paralysis.

6 years in August for me…

In hindsight I had experinced several odd, mild symptoms in the pevious couple of years but thought little of them, then in 2008 had quite a severe episode of optic neuritis (sudden sight loss) and ended up being seen as an emergency at opthamology. I honestly thought there was something wrong with my eye - and didn’t even consider it being anything else, I remember getting really frustrated as the dr, after a quick look at my eye, started asking about my bowel and bladder, getting me to walk across the room etc… & I couldn’t understand why when the problem was with my eye.

I was immediatly referred to neurology MS was diagnosed a couple of weeks later…

Oh, and I no longer have a neurologist or ms nurse, although I do have a telephone number for the ms nurses in another health authority area, they will answer questions IF they bother to return my call. My GP retired last year and once I got him to take me seriously was very supportive, although in saw him rarely. I’ve met my new one, and being on good health don’t expect to see him much either, but he has assured me of his support too.

I’m 12.5 years since diagnosis - and I had no idea it was MS. I just had pins and needles in my feet. I didn’t look up the symptoms or tests although I should have wondered why I was being sent for a brain scan when my feet were the problem (duh, I know).

JBK xx

I cant understand why some of you dont have MS nurses and neuros! Id be screwed without my nurse! My GP knows nothing about MS. The only reason i suspected MS is because of it being in my family. Its nice to hear other peoples story (although not nice to hear what some of you have been through) x

I’m 6 years dx. I first noticed something wasn’t right when out for a hike my left leg started dragging. A number of walks later and still the same problem my husband begged me to go to doctors. The doctor said she thought it could be Parkinson’s. What a shock!!! I convinced myself it couldn’t be much as there was no pain. So off I trot for tests the usual MRI, lumber puncture then appointment with neuro. I was so convinced it wasn’t much that I told my daughter to sit in the waiting room. Then he said ms. I was in so much shock I really couldn’t take anything in. He said there wasn’t anything that could be done,just go off and get on with life the best you can. I didn’t even realise there was different kinds of ms. I thought I had RRMS but I only recently found I was dx with ppms but it could be spms as I think I did have some earlier symptoms which I ignored. I suppose time will tell. Magsxx

Forgot to say I have a ms nurse and I think she is wonderful, don’t know where I would be without her. Magsxxx

Think we all remember being told the diagnosis very clearly - a life changing moment.

I was told 16 years ago on a September morning, but have had symptoms since 1989.(pins and needles in legs, loss of sense of touch in fingers and feet, numb limbs etc). Did go to the library (pre computers and google) and self diagnosed myself 17 years ago. After MRI / lumber puncture my diagnosis was confirmed. My Dr was so nice, I’d just gone on my own. I left the surgery and just went for a walk along the river.

Jen

Hi, I went to my doctor 15months ago as I had developed a problem with walking. I was surprised to be referred to a Neurologist who sent me for an MRI, at the next appointment with the Neurologist I was told the ‘clinical diagnosis’ was MS. It only took about 2months from my first GP visit and it certainly wasn’t what I was expecting. I got a second opinion from a specialist centre who confirmed MS and told me it was probably PPMS. As I live abroad I find this site a valuable source of information especially as it is difficult to get information here in English. This is the first time I have posted on the site.

Hi Sparkle and welcome!

It’s not quite 6 months since I was diagnosed, and 2 years later this month since the onset of the symptoms that caused me to be referred: I was in Sweden for a cousin’s wedding when the tingling in my hands started. Sadly, the tingling has lasted longer than my cousin’s marriage! I have PPMS.

My GP suspected MS and referred me to a neuro steaight away, shame the neuro wasn’t much use and I decided to go for a second referral. Current neuro is much better, inspires much more confidence that he knows what he is talking about.

I’d been for an MRI and a month or so later was at the surgery to see the nurse for a holiday injection when she asked me how I was with my M.S. I don’t have M.S I replied unless that was the conclusion of my MRI. I actually felt sorry for her, she wasn’t to know I hadn’t yet been to Neuro for my results.