Clinical loss of left sided sensation and feeling scared

[WorryRaptor]

MRI came back with cervical stenosis. So three of my vertebrae are squishing things and the discs are messed up which is causing the numbness and weakness in my upper left side. Not too sure whats causing the same thing to happen in my left leg, maybe more damage further down which hasn't been scanned yet. The doctor said its very possible that there are multiple areas acting up at once. Having hypermobile joints likely caused my spine to degrade as quickly as it did.

No fun, but at least I have some answers to some of the symptoms I've been feeling and know what my limitations are. Have to avoid any impact sports or heavy lifting, and try to never get whiplash! No idea what's happening from here, as doctors didn't really give me any indication of what to do other than avoid making it worse. Guess I'll avoid venturing into an MMA or rugby career

[WorryRaptor]

A little update on things. I still have the symptoms, no better no worse. I also developed some awful headaches which come on very quickly. I paid out of pocket for a private MRA to rule out aneurysms as I found out they run in my family, and regular MRI's don't show them. I know it would be extraordinarily rare, but I thought maybe one was in there slowly leaking and causing the neuro issues and if I caught it on time, I could have it addressed. MRA found no evidence but had a note saying there were "signals" that they felt were just a technical glitch, and that the quality of my scan was a little degraded from movement (I thought I stayed still as a statue) So I don't have 100% reassurance, but does anybody really? No they don't. Im happy to have ruled out aneurysms though. It was a very extensive family history.

I'm really struggling with the symptoms. They have no real answer at the moment, and they can come on out of the blue. Tingling, numbness, and weakness all in my left side. One person who used to work in a medical profession told me I was pointing out my motor neurons areas when I described the parts that go numb on my body. She said something is exciting them on my whole left side. Am I anxious it's ALS? Nope. I'm just so very tired of feeling the relentless numbness, tingling, and pain. It seems to shift from pain, to numbness, to weakness, to tingling at random.

Something is off, but nobody can tell me what. At first they told me it was my neck causing part of it, but another neurologist said it definitely wasn't.

I'm just getting on with life, but this is all so draining. I feel like half of myself.

[NoraB]

I'm just getting on with life, but this is all so draining. I feel like half of myself.

Hey Raptor, I have Cervical Spondylosis. I have issues with two discs in my neck and some minor nerve impingement - this is why I was tested for MS. I get neck pain and headaches which are connected to this problem. I do exercises to keep my neck as mobile as possible but my movement on both sides is very limited.

I get tingling, numbness etc and it's because of where the damage is.. The headaches I get with this are horrible and they differ greatly to my normal migraines. I find that heat helps with my neck whereas I would normally use a cool strip for migraines, I find cold makes the neck pain/head pain worse?

I feel for you. Neck pain is crappy. And wear & tear can cause these type of symptoms. I hope you get a definitive answer soon.

P.S I'm hypermobile too.. only with lots of arthritis lol

[WorryRaptor]

Hey Raptor, I have Cervical Spondylosis. I have issues with two discs in my neck and some minor nerve impingement - this is why I was tested for MS. I get neck pain and headaches which are connected to this problem. I do exercises to keep my neck as mobile as possible but my movement on both sides is very limited.

I get tingling, numbness etc and it's because of where the damage is.. The headaches I get with this are horrible and they differ greatly to my normal migraines. I find that heat helps with my neck whereas I would normally use a cool strip for migraines, I find cold makes the neck pain/head pain worse?

I feel for you. Neck pain is crappy. And wear & tear can cause these type of symptoms. I hope you get a definitive answer soon.

P.S I'm hypermobile too.. only with lots of arthritis lol

Thanks for your reply Nora. I really appreciate it

I know exactly what you mean about the neck related headaches being so different to migraines. I take the same approach, cold for migraine, heat for the cervicogenic headaches from hell. (and my absolute saint of a fiancé doing the gentlest of massages around my shoulders and neck)

I'm really sorry to hear you have to deal with that kind of pain too, plus the hypermobility combined with arthritis which only adds an extra dollop of difficulty into the whole process. It's such a sh*t cocktail isn't it!

I am hoping I somehow have wear and tear down my whole back (that sounds so negative haha) because that would explain much of the whole left side being involved simultaneously. I'm even wondering if maybe there's a main problem area and maybe my body has become so sensitive to the pain from the neck and arm, that it repeats down to my leg?

I'm trying not to focus too much on finding the answer as that just sets of a big old OCD adventure where everything becomes a magical clue I just have these days where it all bubbles up and I need to whinge. Thanks so much for listening

[WorryRaptor]

A little update just in case anyone is reading this.

I went to my first physio appointment yesterday, and we talked through a lot of my left sided symptoms. While we couldn't replicate the symptoms fully through movements, there was one brief moment where my head was almost turned all the way back over my shoulder and tilted downwards, that I felt the merest pressure and prickle in my left hand and foot. Apparently this movement engages a "sequence" the spine goes through and with some injuries/instability, it can "catch" and cause tingling/numbness and pain. While the physio said there wasn't a definitive answer and couldn't say for certain, they had a theory that my hypermobility combined with the stenosis could be causing a very transient pressure on my spinal chord with certain movements, hence the full left side symptoms that come and go.

The weird symptoms I've had like sudden fatigue, cervical headaches, mild dysautonomia, pulsatile tinnitus, and bouts of tachycardia can all be caused by craniocervical instability, which a new GP I saw suspected from my history. However, they think that instability is very mild as my scans don't suggest any serious compression while supine, confirmed by a neurologist. Yes the symptoms are scary, but I'm not moments away from paralysing myself and I likely never will be.

The exercises to make my neck more flexible were doing more harm than good too. My range of motion is far, far beyond what is normal, so I have to stop any of that and focus instead on moving more intelligently to stay within a more normal range.

I feel like I'm slowly getting into a stronger mental space about all of this, and the symptoms I've felt over the past few years. While they are legitimate symptoms and not caused by anxiety itself, I do still struggle with moments of panic and despair. which can send me into a "what if" spiral. I'm learning to accept that chronic pain is likely going to remain part of my life, but I need to just ride the waves and stop playing detective with it so much. I'm not chasing certainty as much as I used to, because I know it doesn't exist, and I'm ok with that.

I have bad days with pain, and strange symptoms yes, but I need to stop wasting my good days focused on figuring out those bad days. I want to spend that precious energy on the people and things that I love instead.

[WorryRaptor]

I can't seem to win with this. Yesterday I had a massive "relapse" of the symptoms. They came on suddenly, from head to toe on my left side while I was in the garden. Tingling and weakness. Along with that I had awful stabbing pains in my face and head. It really knocked me back a few paces mentally. Not anxiety, just feeling so mentally drained, and honestly, a bit sorry for myself. I start feeling like I'm a huge burden on my loved ones, because when this happens, I genuinely can't function. My energy levels crash to rock bottom, migraines take me out for days, this weird tingling happens, my heart goes wonky, and before I know it, a week has passed before I start feeling human again. I'm really struggling with the thoughts that I am letting everyone down, and it's genuinely not coming from a psychosomatic place. These symptoms are real, confirmed by doctors, but they have no answer.

Today I still feel the tingling, but more muffled, left side of face, left hand and left foot. I'm clumsy today and my left eyelid and eye feels so, so tired. In the mirror, things look perfectly fine, nothing is drooping (except my boobs!) and I don't seem to be losing strength. My left hand does get a mild tremor though. My fiancé said I seem different after it happens. I don't even have to say anything, he just see's me and knows something is wrong.

I'm trying not to make too many connections, but it seems like this thing happens a day or so after I get really bad ectopic heartbeats. I get the huge sinking feeling in my chest, gasp for air, and feel the pause for 3-4 seconds. When I was a teenager my family doc said she heard a murmur in my heart on three separate occasions and told me to check on it in the future if I ever felt weak or dizzy. Nothing was ever heard since then, but I've only ever had ECG's done. Somebody in a group for hypermobility disorders said she had stroke like symptoms like mine and it turned out her heart was sending little bubbles or mini clots up into her brain and she was having multiple TIA's for months. It was just a tiny little flap in her heart valve letting stuff leak, caused by her faulty collagen, and it was a pretty easy repair. Not saying it's what I have, but I'm starting to wonder if I need to push for something more, or just accept this as something weird that my body does.

I don't want to waste the NHS resources, but I'm also concerned they've given up on this. Do I just keep trucking, or do I actually need them to look into this more?

Edit: I still have a neuro appointment coming up sometime in the near-ish future. I suppose I'll just hold on till then. I'm just so exhausted by this. Any new doctor or specialist I see never has any account of my medical history, and I end up retelling everything over and over again and nothing gets followed up on unless I push for it. It's the only way I found out I was extremely low in folate and vitamin D and borderline b12 deficient and had inflammation markers. Most of which of which I have been addressing myself, and paying privately for follow up blood tests to check my levels are normal as my GP is far too overwhelmed to follow up on these things.

[WorryRaptor]

Had another physio appointment and the physio agreed my problem is not due to anything mechanical. I have to get in contact with my GP again to push for more investigations, and it's just so exhausting. The physio is going to refer to me to pain management for my cervical headaches, and really seemed to care. They didn't want to leave me without at least some help with pain, even if they couldn't solve the other puzzle.

The neurological symptoms are just incredibly hard to take in my stride, but I do try. One minute I'm fine and full of energy, and the next a wave just crashes over me, day after day. I burst out laughing today when my left side went numb, my head filled up with pressure, and the entire lower half of my face felt disconnected. The lower face thing is new, and it was like the final straw. It all felt so ridiculous, like some of of shitty cosmic joke. I must have sounded like I was on the verge of a breakdown, but if I didn't laugh I would have cried.

[NoraB]

The exercises to make my neck more flexible were doing more harm than good too. My range of motion is far, far beyond what is normal, so I have to stop any of that and focus instead on moving more intelligently to stay within a more normal range.

The idea is to build up the neck muscles so they protect what's underneath. You need physio that's tailored to your cervical issues and hypermobility. In my case, the arthritis has affected my range. I'm now down to just in front of my shoulders first thing. With some stretches, I can go a little further..

I have bad days with pain, and strange symptoms yes, but I need to stop wasting my good days focused on figuring out those bad days. I want to spend that precious energy on the people and things that I love instead.

Excellent.

[NoraB]

Has anyone (health professionals) mentioned fibromyalgia to you? Fibromyalgia and MS/ALS have a lot of similarities but fibro doesn't show up on imaging... (not as yet anyway)

[WorryRaptor]

The idea is to build up the neck muscles so they protect what's underneath. You need physio that's tailored to your cervical issues and hypermobility. In my case, the arthritis has affected my range. I'm now down to just in front of my shoulders first thing. With some stretches, I can go a little further..

I asked about strengthening rather than stretching, but my GP didn't think it was necessary. They just kept referring me to standard treatments which made it worse. The physio who saw me last saw how extreme my hypermobility was and she said the pain clinic may find a more suitable approach for me and that anything she could offer was unlikely to help.

Has anyone (health professionals) mentioned fibromyalgia to you? Fibromyalgia and MS/ALS have a lot of similarities but fibro doesn't show up on imaging... (not as yet anyway)

A previous GP (who I refused to see again) mentioned fibromyalgia to me, immediately following up with that he didn't think it was a real illness in and of itself. He said it was likely the same as functional neuralgia and depression just expressed as widespread pain in hypersensitive people. As somebody with friends who struggle enormously with the symptoms of fibro, I made sure I never got booked in with him again.

I'm unsure if I might have it. Certainly the pain patterns seem to match.