Diagnosed with HM but now being tested for MS???


i am a newbie here, looking for someone with similar experiences that could offer advice/information please??

i was admitted to hospital on March 1st after a suspected stroke… I lost vision, hearing and then my left side went cold and numb. The CT came back clear and I was diagnosed with hemiplegic migraines ( although I had no headache or migraine at the time) I have however suffered with migraines for almost 12 years.

The numb feeling has not gone since then and I have days where I find it hard to walk as my leg feels so heavy. My left eye hurts and I feel like I am wearing a pho Tim of the opera cold numbing mask (had my eyes checked and I don’t need glasses)

i hadn’t realised that I suffered with my balance until co-workers pointed out that I often walk into door frames or the corners of the desks. I used to just laugh it off.

I also suffer with extreme tiredness daily and since March I struggle remembering words and occasionally stutter. My memory seems so bad right now. I am struggling at work and trying to be a mum and housewife.

I was referred back to neurology and had my appointment yesterday, we covered many of my symptoms but I forgot to mention my lack of balance. She is sending me for an MRI and a lumber puncture to rule out MS. (Also a huge blood work to be taken)

have any of you suffered the same symptoms or previously been misdiagnosed??

hi bear

not in the same situation as you (diagnosed 2008).

everything appears to be in place for you with your medical issues.

rest as much as you can and then a bit more.

if and when you are diagnosed then the DDA will protect you at work.

i’d prescribe lots of CITV and CBBC with your children.

carole x

Hi Carole.

Im trying my best to rest but my boss, husband and children don’t seem to understand how poorly I am feeling.

The frustration is making me cry. :frowning:

x x


Sometimes the path to diagnosis of MS, or indeed of something different, can take time. People are often diagnosed with one thing which is later changed to a different diagnosis.

So I imagine that an initial diagnosis of hemiplegic migraine is fairly common, but further investigation leads a neurologist to rediagnosis.

Its a very good thing that your neuro is getting both an MRI scan and a lumbar puncture. You could, unfortunately, still end up with no confirmed diagnosis following these two, but you are at least on the way to finding some answers.

It’s easy to say though hard to do, but try to relax a little. It is likely to be several months before you have a definitive answer to the questions you have related to your symptoms.

If you don’t get appointment letters for the MRI and LP within a couple of weeks, phone your hospital appointments team and check that they have received the referrals. It’s possible that so long as they have the referrals, they can book you in there and then. If they haven’t got the referrals, phone the neurologists secretary and ask why there is a delay?

Best of luck


I have to say, I am really quite impressed with my Drs and hospital so far. It was only March that I was admitted to hospital.

i saw my gp two weeks ago, he referred me to neurology, attended my appointment there on Monday 5th June and today I have received my appointment for my MRI on the 20th June. Now to wait for the very much dreaded LP appointment.

That being said, I am having an awful day today. :frowning:

my co-ordination is awful, I managed to stab myself with a sharp knife (twice) I have a cut on my thumb and one on my finger… as I type this I realise they don’t hurt because my left side side feels numb apart from my left calf muscle that really seems to be aching/hurting?? Is that normal. (Well normal for MS)? Lol.

How are you all feeling??