I’m currently having the weirdest and possibly most frightening symptom I’ve ever had!
(I’m currently in the process of diagnosis, seeing neurologist in 3 weeks)
This all started about 4-5 weeks ago when I began experiencing dizziness, when I say dizzy, i don’t mean the room spinning, but more like the feeling of being a little drunk. That sort of spaced out sort of feeling. It’s still present now, and in the meantime I’ve had a whole range of other symptoms from muscle twitches, pins and needles/tingling on both sides of body, mostly legs and feet, also been having a lot of numbness in my face, but not completely numb. I’m still able to move facial muscles but the feeling of the skin being numb is there.
NEW SYMPTOM - this is really frightening me and I’m trying not to panic. I’d be really grateful if anyone could possibly shed some light or if they have similar symptoms and know if this could be an MS symptom.
It started out as the feeling of pressure in my head. So it sort of felt like someone had their palms on both sides of my head and pushing slightly. This started 3 days ago, it’s now turned into this horrid sensation of hard pressure and it also feels like movement. So when it happens its like severe tightening around my head and face, it’s almost as if i can feel my nose moving out of position (it’s not moving) But it feels like someone is putting very harsh pressure on it. So there could be pressure on the left side of my face pushing one way, then pressure on the right side of my nose pishing the other way. This is the only way I can think do describe it. It’s happening right now as i type, the left side of my head just feels like its being pressed against. It almost feels as if my head is magnetised and I’m trying to keep my head/face straight whilst there’s a magnet trying to pull me in the opposite direction …
Does anyone else experience this?
I have heard of the MS hug, and i do know of occasions where people feel this elsewhere, for example in the feet/head/legs, rather than the common place of the chest/ribs.
I cant wait to see the neurologist and find out what is going on. It’s really scary Please let me know if anyone has the symptom or can relate to it? It would put my mind at ease…
Thank you, I hope everyone is doing as well as can be.
Hi i would talk to your GP. Not everything is or should be put down to MS or whatever it is you may have.
You could simply be having tension headaches caused through anxiety as you are worried about your appointment with the neurologist, but really i would talk to GP just to put your mind at rest.
Good luck with your appointment. Until then anything your really worried about i would talk to GP.
The MS hug is usually found around the chest its one of those odd symptoms that can happen in other places but its not usual.
Hi, Thank you for your reply. I will definetly mention it to my gp. I wondered about a tension headache, however whatever it isn’t actually painful. It’s just a sensation with no pain, just uncomfortable. I’ve never had a tension headace before not sure if they’re meant to be painful or not.
That was my second symptom in My 3 week ordeal leading to my diagnosis of MS. I started feeling pins and needles first week the second week my left side had that numb feeling I also felt a sense of euphoria from it. It was like a shiver that would not release feeling it felt wrong and almost relaxing at the same time. With trips to the ER that week I could no longer pass the symptom as work fatigue like the first week. The third week I woke up with double vision I could no longer function at that point back to the Er I went. It wasn’t till the numbness started wrapping around my face that I returned once again where they admitted me and started running the more vigorous test. Mri and lumbar puncture. They were telling me from my second week symptoms that it was a possible ms case. My double vision confirmed it but they decided not to wait for anymore symptom after my entire face went numb and started me on the 5 day IV steroids.
Sorry to hear about your situation I’m glad that you got the treatment though and I hope you’re doing as well as can be now.
I’m still the same, and when you said that ‘shiver’ feeling, I was like, YES! I get that too, mostly when I’m lying down, it sort of reminds me of the feeling you get on a ride, that sort of tingling, except it’s arms and legs instead of tummy.
I went to the emergency dept the other day, they were very rude and dismissive of me, and I cried the whole way home. I waited for hours, feeling very unwell, mostly dizzy, unsteady and very very tired…for a dr to say he wasn’t concerned and for me to go home. He just wasn’t taking my symptoms seriously at all. He did a very quick standard neurology test and told me there’s nothing wrong with me. And i hated that, because I know that there is something not right. Given I have a blood clotting disorder and Lupus, you’d think they would have taken these symptoms more seriously as they could be a sign of anything autoimmune related that can be very dangerous if not treated…I’ve now been referred to the neurologist but god knows how long that is going to take. I have a feeling things will turn for the worse soon enough, as it’s been four weeks now and this, whatever it is, isn’t going away. Dr had suspected low b12 as a deficiency can mimic MS symptoms, but that came back today as normal, so, now to wait for neuro…
Just worried about if things go sideways in the meantime, that experience of going to the ER has really put me off asking for help again …
Thanks again for replying, and I hipe you’re as well as can be!
Hi, Yes originally i was linking it to lupus but they have done bloods and my inflammatory markers are fine. Apperently if it was lupus related, those markers would be high. Hence why they’ve said it could be neurological. I never yhought about MS until the dr mentioned it. She said she wanted rule it out. So I guess that’s the next step. Sorry to hear your dad had lupus. It sure isn’t a nice thing at all. Thanks for your responses xx
I had positive ANA for Lupis at the start of my journey so they did another test six weeks later but it was negative. I did find out that Lupus is very complex and can throw quite a few markers that are positive but negative and vice versa.
I would like to be re tested for lupus to be honest. I sometimes wonder if i do have it. I have reactive to sunlight, i darnt sit out in the sun too long, at one point i had purpura on my legs, but as usual doctors dismissed it has my second lupus was negative.
Lupus and MS share a lot of similar things, including being hard to diagnosis lol. Thats for sure. Although thankfully i dont have organ involvement.
I hope you are feeling a bit better now though its so hard trying to get answers. xxx
Please let me know if anyone has the symptom or can relate to it? It would put my mind at ease…