Hi I’ve been looking on this group for a while and debating about posting as I guess I’m just looking for support or advice and didnt want to really bother anyone until I had a definite diagnosis but I am finding things a struggle. Basically it all started a few months back after the birth of my second child I started having extremely dizzy spells where I would feel like I was going to fall whilst sitting down, migraines constantly (I suffer with this on a normal basis) then came the spasms which started first in the left side of my face along with tingly feelings then it was my left big toe moving all on its own, then it started going to my shoulder muscle leg muscles and now travels all around deciding on which muscle wants to spasm on its own these can all last from 10 minutes upto a whole day, have tingly feeling in top back of my head, then its started so I would be holding my son and could see my arms shaking as if im cold when I wasn’t then struggling to pick up things off the ground such as a card then pins and needles in my feet then started to feel like my whole body was vibrating, started stumbling into things more and stumbling over my words quite a bit. I spoke to my dr about this back when it was just the dizziness and face tingling and drooping first they thought bells palsy then when the rest of the symptoms came out they’ve said possibly m s. I’ve been for one brain scan which only showed up a small colloid cyst nothing else yet they recommended I go for another scan with a dye injected (this was prior to the spasms moving around my body) when I advised my dr of the newer symptoms she now wants me to be referred to a neurologist which I am currently waiting on seeing. I find if im upset or stressed I struggle a lot more to talk ive also had difficulty writing and when I don’t have the spasm symptoms it seems as though my dizziness is worse yet when I have the spasms my dizziness seems to disappear im just wondering if anything has had anything similar and if it turned out to be m s as the drs suspect or something different sorry for the long post just looking for some advice. Thanks in advance, Hayley.
Hi Haley, well your symptoms do sound neurological.
The best adice I can offer, is to keep a diary, write a list of symptoms and see the neuro.
It could be MS, but then it could be something else.
Let us know how it goes please.
Thank you for that information I have written down basically what I’ve put above but in more detail so hoping to see a neurologist soon and maybe get some answers just wasnt sure whether or not to post and discuss as I feel like I’m in limbo. I will post as soon as I get any updates. Thanks again, Hayley.
On the waiting list now to see a neurologist called Dr hinds privately, had new symptoms too such as vibrating all the way upto my head throughout the day rather than just at night and tingling on the right side of my face upper lip and top of my nose as though I’ve had a dentists injection. Not sure if anyone is going through something similar? Just looking for some support whilst waiting to find out more.
Hi Hayley Ive just had 1st appointment with neuro and waiting for MRI of brain and spine. Ive had twitching…almost about to spasm…and vibrations in my feet and abdomen. Im not diagnosed at this time and have been getting pins and needles and Trigeminal neuralgia too( which i thought were migraine related). I also get lightheaded and nauseated and feel hungover a lot of the time with the lightheadedness. Your symptoms do sound neurological as has been said. MRI will be essential for you again I think
Hi Hayley - I have really similar symptoms to you and am currently seeing a bunch of consultants to rule things out. MS has been mentioned. One thing that really rang true with me were your comments about head/face tingling/numbness - I get this more or less constantly and it is horrible. I also get really bad double vision alongside it. This has been getting worse the last 10 years - went from discrete episodes to now being there all the time. The Rheumatologist I saw recently said it could be hemiplegic migraine. I don’t know if you’ve heard of this? I hadn’t - hoping it is this and not MS, but sounds like the route to diagnosis is a pretty long one. I don’t have a neurologist appointment until January next year. Feeling pretty miserable to be honest!
Thank you for that information, how are you finding things ? I’m starting to struggle on the days where my symptoms seem to be on overdrive it then makes me overthink and stress. I just wish things were quicker even though I know im lucky that things have been as quick as they have so far.
I find my mental health is directly linked to my physical health so I absolutely get the overthinking. So my most debilitiating issue (apart from pain) is the lightheadeness and accompanied nausea. Its been going on for ages, comes and goes but this morning i woke up like that and its been present most of the day which makes me feel blah.
Not able to relax when am ‘symptomatic’ and worry more that if even diagnosed it will just be a background symptom and wont go away/ I have researched everything it can be and cant conclude its anything other than neurological GP wont look at it again until neuro has done their bits and bobs, so I continue just feeling generally under par all the time to a lesser or greater degree
Yes its the worst isnt it when you overthink everything else gets affected regardless of how you try now too. I completely feel your pain as soon as I wake up with any symptoms or things out of my control it just makes me feel rubbish for the rest of the day. Its so difficult because there are so many different things that can come with things like this and until a neurologist sees you and says otherwise you’re just stuck dealing with this without fully knowing what it is or what will help isnt it ? I feel totally frustrated which I’m sure you do too given the circumstances.
Hi im sorry to hear you are going through the same, yes the head tingling and numbness is the one I always worry over. I’ve been lucky with my eye sight only now is it starting to have some issues but I’ve always worn glasses so I didnt really notice any major differences. I suffer with migraines long term and I have had a hemiplegic migraine that would be a blessing to have aside from actually having m s however having additional symptoms and continuous makes me believe otherwise. I can certainly understand where you’re coming from with the miserable feeling as it does leave a deflated feeling when you’re stuck in limbo and have a long way to diagnoses from the sounds of things when my dr was explaining. Here if I can help with anything even though I’m in limbo myself. Hayley x