Hello i was wondering if anyone would like to have a look through my symptoms and see if im barking up the wrong tree here or not , Much appreciated. as a note i have had the following checks so far
CT - head , clear
MRI - head , clear (no contrast)
Awaiting neurology appointment (up to 31 weeks)
I had an on and off numb left thigh for about 2 years which i ignored until around Christmas time 2019 it appeared to ramp up in severity , it would range from just light numbness to burning , crawling painful and once or twice it went ice cold. There have been quite a few symptoms iv had over the years but hadn’t put them together , until a colleague mentioned MS when i was telling him what was going on around Christmas time. Fatigue has always been a problem , i can sleep so much and end up tired after being awake and about for a short time , GP was playing with the idea of a chronic fatigue syndrome but wasnt pursued.
My left thigh numbness has finally pretty much gone since last christmas , only present now when i go to bed . however over the last 2-3 weeks has been replaced by burning/stabbing sensations in the top right of my head , right eye and behind right ear with varying severity and frequency . i also hadnt noticed that the vision in my right eye has reduced/gone blurry which has come as a bit of a shock . i just happened to check with 1 hand over the left eye and switch to see the difference . i occasionally have flashes of colour during movements aswell.
Last night i had moderate stabbing in my left eye aswell so im concerned my vision in both eyes are going to get effected soon. as im typing now i got top right burning. heres a brief list of other things i experience :
some sexual dysfunction around christmas time 2019
Dermatographia as of march this year
facial numbness/burning
arms/legs tingle or get numb very easily , hands get tingly driving long distances.
waves of tingling/crawling that move up or down a limb
squeezing sensation arm or tummy.
moodswings , irritablilty , depression, anxiety , at one point some hystatical laughter at simple things.
short term memory issues , not consistant at work with ensuring sensors are turned on e.t.c
fatigue , my god the fatigue!
feet agony in the morning
tension headaches
I apologise for the essay , id like to explain that there are times i am 100% sure i have Ms then there are times i dont know even with all the above, perhaps because i have good days/weeks before decending back into things. i dont want to be thought of as a hypochondriac or something and as stated above im on my own at the moment , i can email my gp symptoms to add to my medical record to save keep phoning them but even with that i dont want to keep pestering them . what can i do if anything at this stage and well is this all in my head as some people try to tell me? i would appreciate your responses good or bad. many thanks.
Yes some of those symptoms can be caused by MS but the great news is your clear brain MRI statistically makes it very unlikely in your case. There can be many other explanations and it’s only natural to worry about the more serious ones but do keep reminding yourself that there are many alternative conditions that could explain your symptoms too.
Have you had your vitamin d and b12 levels checked? If not I’d ask your GP to arrange a blood test for you and also maybe consider taking daily vitamin d if you don’t already.
31 weeks is a long wait so you could also try calling and saying that you’re happy to go in any day or time if a cancellation becomes available. It’s prob worth ringing every couple of weeks to check. It can be hard to nag but it’s your health and so important and in my experience nagging does go a long way! So don’t let any feelings of should I be calling again/using their time again stop you. It’s not all in your head and even if it was were that still means you need some help. Whatever the cause, symptoms are symptoms and no one should have to put up with feeling rubbish all the time.
if it helps as a little tip, when I was waiting ages for an appointment I’d actually write in my diary the next time I was going to call up to check earlier avialabilty. That way it helped me to switch off from it until that day came around, rather than it always being on my mind as something I needed to do.
Start keeping a symptom diary too - will make the next appointment easier if you have it all written down.
lots of love xx
The first thing that was done when i went about this was a blood test , which came back fine . then the gp said the route would be CT-MRI-Neuro in that order. if things were clear that is , part of me wonders could the scans have stuff they missed or for example contrast not used , or maybe it was a simple case of they were only looking for the jump out obvious things.
I have always tried to find a non MS to each individual thing , like maybe im just lazy when im so tired im nodding off on my machine hehe . or maybe i have bad circulation so thats why my arms and legs go numb in bed and when i sit down or when i get stiff muscles because i excert myself a little at work maybe im just getting old . headaches ?, glasses? .
But what has me stumped atm and i havnt looked to deeply but is the daily stabbing , if it isnt my head its my eyes, arms , legs . i swear someone has a voodoo doll u know?
I have been keeping a symptom diary for about a month and iv tried to recall as much as i could from as far back as i can. I might go ahead and ring them again and just express that i can be available anytime , although i think they are still in the process of liasing with my GP for how urgent it is . hence why i asked for them to add my symptoms to my records for review as the GP didnt have the whole picture .
It sounds like things are moving forward then and it’s good you’ve already had blood tests too. Would you say you’re someone who gets stressed/anxious much (aside from about this - think we’re all in that boat!) I’ve seen a few people on here have been told their symptoms could have a psychological cause which is why I ask. That could too explain the stabbing pains.
If you’re concerned about your mri coming back clear - I was with mine too! Couldn’t believe it. Then you can ask for a copy of the report to be sent to you and also the disc with the images on. My new neurologist asked to see it so it’s worth getting hold of especially if you’re worried the results may have missed something.
I don’t think no contrast matters - it’s not normal for them to use it routinely. Hope you’ve managed to have as happy as weekend as possible with all this going on! Xx
Yeah i defiantly get some anxiety and alot of stress at times at work , most of my symptoms occur at work , its also really hot in there this time of year , although the worst time was around christmas 2019 in winter, i keep a journal at work also . my partner says it could all be stress/heat related but i always come back with “then surely everybody would have these things going on and it would be well documented” and that surely there is some underlying issue that is aggrevated by my environment not the sole cause???
some thing’s have been going on way further back however so im not sure . i guess its good right now that most things have calmed down to just a few stabbing pains here and there but that christmas period just gone it was alot of things all the time. like a characteristic “flair up” .
if my vision in my right eye has changed , along with the stabbings in those areas i was looking into it being optical neuritis which is a pretty common thing for MS , but not exclusive either . Also why the hell have i suddenly developed dermatographia out of the blue . apparently this is an auto immune problem aswell and very rare at that!??!
I just dont want to return to ignoring it like i have the past few years, wake up one day with partial blindness or god knows what else.
I will try ringing the hospital to see if they can give me copies of the mri and the reports , i had wondered if it was possible to get that.
im very grateful that things have moved fast cos i know some people are not as fortunate, if it wasnt for the lockdown it would of been an even quicker process so to get so far along so quickly i feel lucky on that part. i cant really moan about the 31 week wait for neuro at this point as everything prior has been quick.
The weekend was quick but enjoyable , i hope you had a fantastic time !
Hi Am in sane boat though waiting for 1st neuro appt. I do same as you in thinking…if i wasnt worried about MS…what would this be. So far I’d have 6 different things! Im now also looking back at recurring things and concluding that with recent issues they could be attributable to it but blaming migraine etc. This weeks joy is a buzzing vibrating foot…last weeks was face pain and stabbing in my ears. Alongside bladder issues. Am desperate for appt as not sure can cope with uncertainty- though would be delighted with a clear MRI!! I know functional neuro dosrder often noted in lack of scanning evidence/other results Hope you get sone result soon. Psychological responses to this would be reactive rather than cause if symptoms!
I had a flare up around Xmas too and it was always way worse on days I worked. I think just being busy, leaning and standing all day (I’m a teacher of young children) just seemed to aggregate all the symptoms and make them worse. By saying it got worse at work my doctors were very quick to want to link it to stress and I kept having to explain that I really don’t find my job itself that stressful - I’m stressed cause I’m ill not the other way round!
I think it’s quite common for certain environments and certainly certain movements to trigger symptoms. For me it was leaning forward, like if I was looking over their shoulder at their work, and then standing up again. Heat is well know to cause symptoms to play up too.
Thats great you’re not being made to wait too long and yeah, def think it’s worth chasing up for a copy of the mri images and report in the meantime.
Know what you mean worried24 about ignorance being bliss. But then I worry that if it is MS and I go for years more without treatment what the implications of that could be for the future. But it’s definitely tempting to ignore it and get on with having a happy life instead of all this worry!
Tingling hands, feet and head. Head was the worst! Gave me a horrible tension headache by the end of the day. And then a few weeks later it calmed down a bit - late Jan/early Feb had horrible eye pain, dizziness
, altered sensations (things felt cold) and numbness. Also randomly pins and needles in my legs every time I had a shower, would stop after the shower. Assumed it was all one long drawn out thing at the time but knowing what I do now must’ve been two flare ups close together I guess. MRI done in March was clear, but had it repeated in May and it wasn’t. Hence why my neurologist now wants to see the first MRI for himself x
Just to add an update , i finally saw a neurologist today . based on my clear mri and clear cts of my head he’s not convinced i have anything wrong and wants to send me to a psychiatric hospital to pursue a FND diagnosis . he said hes not ordering anymore tests be done unless refered back from the psychiatric place. i dont know why we wouldnt of got an mri of my spine done aswell just to be 100% but here we are.
i took my symptom diary but was just met with a raised eyebrows and moved along in the conversation . so apparently it isnt a physical problem . admittedly most things have calmed down with now numbness only occuring when i get in bed now , the examination went fine.
Not sure why functional neurological disorder would come after referral to psychiatry- as far as i knew it was neurologists who diagnosed this. I think altered sensations whilst an early symptom ( esp when people are subsequently diagnosed and then look back), isn’t always blatant enough for them to jump to MS. It’s good all tests are clear but am always dismayed by how much medics then jump to it being mental illness- who wouldn’t be anxious or depressed in reaction to feeling unwell. Hope you get answers soon
. so apparently it isnt a physical problem . admittedly most things have calmed down with now numbness only occuring when i get in bed now , the examination went fine.