Hi all, I’m hoping someone can put my mind at ease over Xmas, I’m waiting For an MRI of my brain, the history is I was diagnosed with TM (traverse myelitus) in 2000, I’ve since had 3 relapses all bearable after each child I’ve had (last one 3 yrs ago ). The main symptoms being back pain sciatica and numbness tingling down right side. This relapse I’ve started with stiff neck, band like pressure across the back of my head and soreness up the back of your two main tendons in yr head. Numbness and tingling in hands feet, bad fatigue, ice prickle sensations all over body, sciatica again in left side, occasional tingling tongue and nose. And jaw ache. My eye sight thankfully has never been affected. But because my symptoms are quite different this time I’m so worried it’s something else, more sinister, my emotional state has taken a nose dive and I’m suffering with anxiety (hate bedtimes). My last scan of the neck and bottom part of my cranial part if head showed multiple lesions. Is any one else out there the same - need to hear there’s others out there the same Thanks for reading x
Hi Lisa, I’m assuming you have not been diagnosed with MS? I’m very surprised this is still the case, if you’ve had three confirmed relapses following an episode of TM, and brain lesions on MRI as well but perhaps something still did not quite fit. It’s actually not common for relapses to follow the same pattern every time, but more common for them to be different. So I don’t think it means you have anything different to what you have already known or suspected for some time. Relapses can take almost any form, and aren’t limited to what’s happened in the past. It all depends where the lesions form - which is random, and rarely the same twice. Hope this helps, Tina
I certainly recognise the stiff neck and band like pressure across the back of the head (although I’ve not heard anyone else mention that so I’m sort of glad you did). I also had pins and needles which is very common. I’m also surprised you haven’t been diagnosed if you have already had relapses.
Thanks Anitra that info is consoling. I have alway had a very cloudy diagnosis mainly docs have said TM but now poss leaning to ms with this latest relapse … I’ve only ever had relapses with a child (apart from the first) and this one. I’m so anxious at the moment I think I’m having symptoms with this also eg burning ears and lips. But has anyone experienced the tingling tongue I wouldn’t say its numb as I can feel it still, just a funny tingly furry sensation… Because this relapse feels different I have got myself so enormously worked up it could be a brain tumor …
Pudding lover - this is half my frustrations that I’ve never had a clear diagnosis, I’m generally fit and well until relapses, some stuff is very scary Thanks x
Hi Anitra and pudding lover I’m new to this site so thankyou for the replies. Yes frustratingly I’ve never been clearly diagnosed in fact after my 2nd child I had a 5 yr gap to my third child and I hadn’t had any symptoms and the neuro signed me off!. But I was expecting my third child and 10months later relapsed again… They’ve all lasted around 3-4 months but this time it’s lasting longer (does length if time differ also?) and I’ve not had another child SO I’m wondering why I’ve relapsed… It feels like there has been a build up to this relapse where I don’t feel I’ve had that before hence feeling like something more sinister like a brain tumour or something… Getting myself into such a state over It all… Do u know if tougne tingling is a symptom? This is my latest I’ve had it for about 4-5 weeks now… My sciatica is a little better and so are my muscle spasms but feel this relapse is taking its toll, my mental health is shot!!. Which I don’t think helps symptoms ! Do any of you have an ms nurse?. This is something I’m lacking someone to talk too… Thanks for listening X
Hi Anitra and pudding lover I’m new to this site so thankyou for the replies. Yes frustratingly I’ve never been clearly diagnosed in fact after my 2nd child I had a 5 yr gap to my third child and I hadn’t had any symptoms and the neuro signed me off!. But I was expecting my third child and 10months later relapsed again… They’ve all lasted around 3-4 months but this time it’s lasting longer (does length if time differ also?) and I’ve not had another child SO I’m wondering why I’ve relapsed… It feels like there has been a build up to this relapse where I don’t feel I’ve had that before hence feeling like something more sinister like a brain tumour or something… Getting myself into such a state over It all… Do u know if tougne tingling is a symptom? This is my latest I’ve had it for about 4-5 weeks now… My sciatica is a little better and so are my muscle spasms but feel this relapse is taking its toll, my mental health is shot!!. Which I don’t think helps symptoms ! Do any of you have an ms nurse?. This is something I’m lacking someone to talk too… Thanks for listening X
Sorry not clear how this works yet! Lol x
I’m sure I have heard of others with a tingling tongue. I do have an ms nurse, and they are very good. This site can help you find your local one, from the home page I think it is ‘near me’. Anxiety can certainly make you feel worse so I started meditation which helped me. I’ve been off work since August, had a relapse in October and I’m just starting again, but I have not fully recovered in between. I’m also not yet diagnosed with ms, just CIS but I don’t know if this latest relapse will do it for me or if they will still count it as one episode.
I get the tingling tongue, so know exactly what you mean! I get several weird sensations on my tongue, actually, but the tingling is the most common. I’m sure there are others on here who have mentioned it before, too. Xx
I was going to suggest you speak to your GP or MS nurse too. The MS nurses I’ve spoken to have been brilliant.
I do know someone with TM and from what I can works out, to all intents and purposes it’s really pretty much the same as MS, there’s just no lesions on the brain. She takes similar meds and everything and has the same sorts of issues I hear about on here. That might be why diagnosis is a bit murky.
Good luck
Sonia x
Hi Lisa. I had half a numb tongue with thinking face and my taste was affected. First time everything tasted foul. Second time only cold things tasted foul! I continue to be fascinated ( and pissed off) by this weird and wacky disease!
Tingling face not thinking face!
Hi, I’m new to this site. I’m really scared because my boyfriend has been complaining of pins and needles in his arms lately, occasionally chest pain (tightness) and recently he says sometimes one or both of his arms feel numb. The degree of the pins and needles varies. He also says his anxiety has got worse and lately he struggles to focus his mind.
Alarm bells are ringing in my head that this may be MS
He went to the doctors but they found nothing. I think he should go again.
Any advice would be really appreciated.
Thanks,
Laura
Hi
My boyfriend has recently been complaining of pins and needles in his arms (degree varies on different days). sometimes one or both of his arms being numb and occasionally a tight chest. He also says his anxiety has got worse and he has trouble trying to focus his mind.
He has been to the doctors but they have said it is purely anxiety, alarm bells are ringing in my head though.
Does this sound like MS?
I am getting him to go back to the doctors, but do you have any advice?