Hello all.
For the past 7 or 8 weeks, I’ve been having odd symptoms.
Muscle twitches (exactly like an eye twitch but felt in the muscles of the biceps, triceps, shoulders, forearms, thighs, calves, occasionally neck). More like “fluttering”.
Deep groin ache/pain/stiffness
Cramping calf muscles. Actually the pain is really felt behind the knees but it feels very tight.
Constant pins and needles sensation, mainly in rights arm and leg but have also felt it in the left side.
Right arm feels “heavy”, not weakness precisely, just a “dead arm” type feeling. Right thigh feels quite numb, almost like it is encased in thick leather.
Several instances of a stabbing electrical zing/shock across my left ear and cheek, last for literally one second then disappears.
Deep aching muscle of lower back, thighs and groin.
Squeezing pain in right lower back that travels around the right flank and into the right abdomen.
Tremor in right thumb that come and goes.
I have had bloods that rule out B12 deficiency, thyroid issues, liver and kidney issues etc. Calcium levels are normal.
I’ve been referred to neurology through private healthcare but this is still a wait of 4 months!
My main question though, is the muscle twitching. I have read (and was told by a neuro on Youtube when I asked a question) that twitches are categorically NOT an MS symptom because they involve a different part of the nervous system. This has led me down the rabbit hole of MND and ALS, but conversely I’ve read that numbness and tingling are NOT signs of MND or ALS!
I seem to have both the numbness/tingling AND the muscle twitching.
Does anyone else with MS experience this?
And do my symptoms seem to point to a possible diagnosis of MS?
For what it’s worth, the sheer number of different things arriving in a short time period does not match my personal experience of MS. But my personal experience is all I have to go on. You need an expert opinion.
Just thought I’d chime in because I’ve had symptoms similar to what you describe since August 2021… a lot of aching/nerve pain in limbs, zaps in my face, intense pins and needles, heavy but not weak limbs, trembling hands/fingers, and craaazy muscle twitches absolutely everywhere. I never had numbness but I had distorted proprioception where I couldn’t properly tell where my hands and feet were… weird!
I’ve also been down the exact same rabbit hole as you worrying about MS, and then MND, and then back to MS… endlessly!
But - I have had tests for pretty much every disease tests exist for: MRIs, blood tests, etc. and they have all been negative. I also saw a neurologist who is a leading expert in MND and he categorically told me that the combination of symptoms I have (even including the muscle twitches) were nothing like any case of MND he’d ever seen. And I’m two years into having these symptoms and it’s never developed into that, or MS - or anything else serious!
Obviously I don’t know your specific medical situation, but I know what it’s like to be scared about these things and feel really alone and confused and get totally convinced you’re really sick cause that’s all you can find online, so I just wanted to share with you that it CAN turn out ok.
Like I said it’s been nearly two years for me, and I’d say my symptoms have 90% resolved by now. I still have flares sometimes and new tingles/twitches occasionally pop up, but at one point last year I could barely walk and I would just lie crying in pain and fear every evening… and now I am nearly back to normal. So it is sometimes possible to have really weird, horrible symptoms, but it eventually turn out ok.
Look up neuroplastic pain/symptoms and see if you feel any of that resonates with you. I think it’s the explanation behind what I went through.
I hope this is at least a little bit comforting to you I know reading these forums helped me SO much when I was feeling my worst.
Thanks so much for the replies.
I will update after I have my neuro appointment in 4 months.
Thank you for the suggestion of looking up neuroplastic pain. It does seem to also describe some of the symptoms, but so does so many things! I sometimes think Google is one of the worst things ever invented.
I am glad you are doing so much better than two years ago. It gives me hope that I will not feel this way forever.
Thank you for taking the time to reply.
I don’t have a diagnosis, but my friend was diagnosed with MS in 2020 and his main symptom was a constant twitch in his eye (quite significant, like pulling almost all the way shut).
I resonated with your message so much!! I have the mirror image of what you are describing, left instead of right lol.
Amongst other symptoms I have quite a lot of twitch’s in various places, left eye, arms legs etc and deep down flutters/vibrations that don’t show but are felt strongly. I also have jerks where my abdomen and left thigh sort of contract together, and other stinging electric shock feelings that hit random areas (like the top on my big toe for example ) and make my arm or leg shoot out.
I’m waiting for neurologist appointment to read my MRI scans to check for ms, but the spine specialist referred me to see a rheumatologist as she thought it could possibly be fibromyalgia.
I’ve been experiencing these things for years with some months harder than others.
Maybe worth while asking the question? not all doctors believe it is a real thing so might not think of it.
Hope you find out what is causing you the symptoms!
All the best,
Kyla
I know reading these forums helped me SO much when I was feeling my worst.
) and make my arm or leg shoot out.