Hi all, I hope you’re all doing well.
I used to be a member of this site about 15 years ago after experiencing strange symptoms for a long time but I never got a diagnosis.
Since then, I’ve had back surgery and been diagnosed with a low calcium condition, both of which have served as red herrings for other problems I’ve had.
Over the years (20+) I’ve had so many strange feelings from like a mobile phone buzzing under my skin, sudden heat on normal temperature skin, reduced sensation, a feeling like I’ve been burnt or grazed an area when I haven’t had any injury at all and so many more things…even just not feeling ‘right’ if that makes any sense.
This year, I got a chest infection in January and got what was diagnosed as mild Bell’s palsy as a result. However, A&E didn’t scan me, even though I also complained of tingles in my arm and leg as well as my face. They gave me steroids and sent me on my way. Within days i kept feeling the hot patches intermittently and occasional buzzing feelings in my leg. Then my thumb on that side was twitching for a week.
My GP referred me to neurology which took 8 months. I had an mri which was reported normal in October. Previous MRIs were all normal with one calcium spot.
Typically as soon as I’d had the last mri, I started getting heat all over my lower leg, almost like someone holding a hot wet towel on it, then it keeps coming and going.
Fast forward to just over a week ago and I started getting a weird buzzing/rumbling feeling and reduced feeling in the left side saddle area. It’s not completely new as I had similar over the years, especially before my back surgery, so I assumed this time was also related to my back. I waited 5 days then went to my gp and she sent me to a&e. They admitted me for suspected cauda equina and scanned me the next day. No cauda equina, and just the perineural cysts I’d previously had decompressed. They didn’t look much bigger than previously to me although no measurements were taken of them so I can’t be sure.
Anyway, I was discharged after being told ‘I see a perfectly healthy woman in front of me’. I asked what could be causing the saddle area issues and he said he didn’t know, didn’t feel it needed further investigation or a referral to neurology and to see how I get on. Two days later I started getting twitching muscles in my thigh and buttock. I’m now sat close to tears, worried, frustrated and wondering what to do now. I’m experiencing all this as I type.
I know the drs and consultants will dismiss me as I’ve had tests/scans already.
Given how long I’ve had symptoms for, starting with a leg and ankle lack of feeling 20 years ago, something surely must’ve been obvious on scans by now?
Sorry for the long post. All the medical advice I’m being given is that I’m fine.
I don’t feel fine. I’m not crazy like the drs think, but I am slowly becoming very low. They told me if I get depressed, that will also cause the symptoms I get.
I don’t know what to do next.
I can’t afford to stop working and my job is quite physical, which sometimes makes things worse. I don’t get sick pay as I haven’t been there long enough and am not entitled to benefits so I can’t take time off or leave. I feel absolutely stuck and am wondering where I go from here.
Thank you for reading. That’s pretty much the short version.
Where was your MRI? Brain, neck or both?
Hi, I’ve definitely had about 5 scans of my brain and lower back but I’ve never been told i was having one of my neck so I don’t think I have.
This is something else I didn’t think of as a possible symptom but now am wondering if it is….about 6 weeks ago, maybe a bit more or less, I had this very strange cramp at the back of my left leg, behind the knee nearly every time I moved around, worst walking up stairs or hills. Then it just went after a few days but it wasn’t particularly bad. On Tuesday, it started again and gets more painful the longer I’m moving. It takes some time to settle and during a few frequent trips up and down stairs yesterday, I also felt it in my upper thigh. Is this anything like a symptom?
I also not long ago had a shooting pain in my thumb and forefinger and upper left thigh all in the same instant. I don’t remember ever experiencing that before. I find it very strange that the majority of my symptoms are on the left side.
I can understand your confusion as some of the symptoms map onto MS but my understanding is that MS would be picked up by an MRI, so if you’ve had several and they’re not finding lesions, it’s not MS. Sorry as I know that doesn’t help you, but as I understand it from my neurologists, MRIs are one of the main tools for diagnosing MS so I assume they’d have found it if that’s what was the cause of your symptoms.
Sorry to read that you are being gaslighted, elliott849. I had years of it before I was finally diagnosed with MS.
I am assuming that blood tests for vitamin deficiencies have been done and come back OK.
Have you been checked by Rheumatology - quite a few rheumatic conditions share symptoms with conditions like MS - its a good idea to rule any of those out whilst battling with the GPs/Neuros.
As for nothing showing on MRIs - I have 3 lesions in my brain which are (apparently) nothing to do with my MS. I had several MRIs of my spine (cervical and thoracic) before any lesions showed up there - they are notoriously difficult to spot - I had symptoms of spinal lesions long before the MRI was able to pick them up clearly.