Strange, unexplained symptoms

[jamesuk1981]

Hello. I have had some very bizarre neurological issues recently (and my neurologist is stumped) so I thought id throw this out to see if anyone is interested and has some ideas.

Me: otherwise healthy, white 39 year old male with Scandinavian/blonde/pale skin and hair. Only neurological issue was a bout of Meralgia paresthetica in my right thigh early last year.

In July last year (2020) I suddenly started getting the sensation of vibrating/buzzing inside my lower legs - like a mobile phone type vibration. I only felt it when at rest and not when walking or moving my legs. A few times it happened in my whole body during the night in bed - I'd wake up and feel it going as far up as into my arms. I saw my GP who was stumped and blood tests came back normal inc B12. Since Covid, I have been taking Vitamin D supplements too. These symptoms disappeared after a few weeks and I basically forgot about it.
Then in early January, it came back all of a sudden. Mostly in my legs, a few times overnight in my body. As before, it disappeared after a few weeks. However, I was left with a bizarre symptom of whenever I touch my groin area, including penis, the small toes on my right foot feel like gravel is being rolled around inside them. It happens when I move my hips too. The gravelly, vibrating feeling happens in time with hip movement or when I touch this area of my body. This continues to this day - all movement in my mid area makes my right foot toes have this annoying sensation and as I walk around my right foot feels like it’s walking on sand. I began to get brief wet and cold feelings on the skin of my feet and legs. Like cold water is being poured on my skin. I am also now experience burning sensations in the soles of my feet quite often and have to take my socks off to feel more comfortable. Every now and then I also feel an internal vibration/buzz around my bottom / base of spine, usually only when sat down.

Finally, during this time I also started to get hyper sensitivity to loud/abrupt sounds and have constant tinnitus in both ears. I am currently finding it hard day-to-day as sounds like clanking (such as pots and pans, plates) and loudish speech can feel like my brain is being pierced. I do not know if this is connected to the other stuff but I find it odd that it came about during this time.

During all of this I have been very anxious and worried. I saw a neurologist, and I was quite concerned about MS. I had blood tests and had an MRI of brain and spine. MRI was normal, no signs of nerve lesions anywhere and the only indicator of the blood tests were an elevated ACE Serum level of 60 (normal range goes up to 52 I believe). My neurologist was left stumped by this and didn’t seem concerned to pursue this.  I was just wondering if anyone had any other thoughts or have experienced something similar. My neurologist had told me to come back in 4-6 weeks if no improvement, and thinks it is likely “post viral” but I am concerned about nerve damage, especially with the horrible burning sensations in my feet.

[CrazyFox928]

Very similar to my experience. I too get a "phone" type vibration in my left hip/buttock area. My left foot feels like I'm walking in a wet shoe most of the time. It feels like someone pours ice cold water on my legs and head at times. I get hot spots all over -- they feel so real I look for a heat source and at times, have been too close to a fire and thought the heat was just in my mind. My eyes heat up in their sockets. I have sharp "lightening bolt" pains in my right leg, both feet, eyes, tongue and face. Sometimes it feels at though someone has sliced my leg in half with a hot knife/sword. I have been to numerous neurologists -- each time they take an mri and each time they accuse me of having anxiety or depression or a psychological issue, even though my brother was diagnosed with MS years earlier -- oh yes, one doctor accused me of being jealous of my brother -- even though it was my brother that told me I needed to see a doctor and get this figured out. Like you, it comes and goes and rarely presents itself during an examination.  I've lost hope that I will be able to deal with this in any sort of preventative way. I'm fairly certain by the time a doctor believes me it will be too late to be reversed I am already going on 20 years of this and it continues to progress in a sort of two steps forward, one step back kind of way. I'm sorry you are going through this, I hope it helps to know you are not alone. I've changed my diet (eat lots of dark berries- which I read is good for your nerves) and try to exercise often. I'm also practice qigong daily. I'd like to think these things help, but since this comes and goes, it's hard to say for sure. It does ease my mind to think that I may have some control over this. I hope this provides some help and hope for you.

[Larissaown]

Holy crap your experience is word for word what's happening to me and my neuro thought it was ms but no lesions and I was denied to donate plasma because my levels were elevated! I'm now being reevaluated for ms!