Hello all
i am currently undergoing investigations for my neurological symptoms. I am 39 and male. I am quite concerned about the range of the symptoms and speed on their onset. I thought maybe people here may have some thoughts they would be happy to share.
Back in 2019 I had a single incidence where I thought I had stepped in something wet, but I hadn’t. Then in July last year, I suddenly had a vibrating/buzzing sensation in both my legs when at rest. It would last for hours - not painful, just annoying. I thought it may have been restless leg syndrome at first. This feeling happened in my trunk when waking up during the night for a couple of nights too. This went away after 3 weeks and I felt nothing more for 6 months.
Then in January this year the feeling came back for a few weeks and it included a feeling of “tugging” on one of my small toes on my right foot. I went to a neuro privately as the NHS wait time was 46 weeks (!!) and he ordered a standard 1.5T MRI of brain and spinal cord - assuming it was likely a “post viral” thing. Blood tests were normal. The scan came back showing no signs of demylination and my neuro just said “it isn’t MS”.
The leg vibrating sensation went away again after a few weeks but left a host of other weird, mostly sensory symptoms in their wake. The day after the leg vibration feeling went away, I noticed that touching my groin/inner thigh makes a referred gravelly sensation in my right foot small toes - as if gravel is being rolled around inside them as I move my hand over the skin of my groin area (the same toes that had the initial tugging feeling), then shortly after I started getting Raynauds like phenomenon in my feet and also parts of my hands, with freezing cold toes and burning sensation in my soles, wet/cold splashes sensations on the skin of my legs which went away but returned after a few weeks on my arms and face too. Then I got a sudden onset low level tinnitus and sensitivity to loud/abrupt sounds - this was really difficult to deal with at first but had become slightly less aggressive over the weeks. When I walk it is like I have sand swirling around inside my feet. I started to get numb hands on and off when waking up from even short bouts of sleep. Some pins and needles have started to develop in my hands and feet too, especially when I am stretching them. Being out and about is difficult as I often feel like I have to really concentrate on walking and activities to make sure I’m alert. I just don’t feel as snappy and “with it” as I used to. The latest thing I am having, is a horrid buzzing feeling in my lower half of my body - like my sacrum and legs are a tuning fork. This began in small bursts from time to time a few weeks ago, and lately I have had a few 12 hour long stints with this feeling which I guess could be described as an internal tremor. It is a really horrid feeling as my legs feel like they quiver when it’s happening and my feet feel like they have mobile phones or tuning forks buzzing inside them. Thankfully it isn’t happening all the time, and the main constant irritant is my feet which always feel like they have gravel or sand in them when moving around or walking.
My neuro still seems to want to hold onto the idea that it’s post viral, or if it is MS, then it’s likely “mild”, which doesn’t convince me. He even gave me 5 days of 500mg steroids as he thought I was having “a little flare up of inflammation”. Hmm. I’ve just taken my last lot of them today.
I have just asked for a further (private - I am totally skint now) MRI, this time 3T with contrast injection as my first MRI was done before most of these symptoms had emerged and wasn’t with contrast. My neuro agreed and is doing a lumbar puncture on the NHS in 2 weeks too, so I should know more definitively within a month or so. My main concern is the speed of onset, number and length of the symptoms. They all came on quickly after the initial leg vibration feelings, but haven’t really “remitted” yet in the 2 months since it all came on (though they undulate and come/go) and of course, they are affecting most parts of my body. So my main worry (being 39 and male) is that it may be PPMS. Yet I had read PP tends to starts less suddenly (like Weakness in one area of body) and gradually shows up rather than coming in all at once like in my case? Is it still possible I have RRMS? Are initial/first/early flare ups in RRMS likely to last for 2 months before evidence of any remission?
I am bracing myself for an MS diagnosis soon, so any help or support will be gratefully received.
thanks
james