Not finding a diagnosis and need someone who can relate or seen it before

Hi all,

I’m James. Fairly new here but thought I’d try my luck and post details around something that has been incredibly disturbing for me in recent times with the hope I can find someone who has had the same or similar experience; or anyone with general advice or input.

I’m experiencing some medical problems that are quite disturbing and also not diagnosed as yet.

I’ll try keep it short. My symptoms started developing and evolving two years ago. I developed a very slight ringing in the ears. Just the left ear actually. I didn’t think much of it and though it would go away. It didn’t and before I knew, months had gone by. During this time I noticed also that my memory and cognitive ability are not what they were but I wrote that down to getting older and being overworked. After about 6 to 8 months of the ringing in the ears first appearing, weird symptoms cropped up. I started feeling funny… Not sure how to describe it, only that my left hand / arm and foot/ lower leg started feeling “dumb”. Not numb, but dumb. Not tingling, not dead or numb, just a little lazy / weak / dumb. I don’t think they are really weaker much but it’s a funny sensation to describe. I started seeing doctors at this point but nothing was found. I’ll share more on that later. Now, in the most recent evolution of my symptoms, the “dumb” hand sensation increased. It feels like my body is dissolving. Sometimes I describe it to myself as my left hand is shaking but not visibly – just feels like it’s shaking on the inside. If you touch it or watch it there is no trembling visible at all but it feels shaky on the inside. Also started experiencing a lot of muscle twitches, especially in the hands and fore arms. Lastly, and maybe most concerning, I started to get pain – right at the tips of my big toes – couple of times per day for a few minutes and really painful. Can’t decide whether it’s burning or stinging – probably like a bee sting but not as sharp, slightly more dull but still quite painful. I guess you would describe it as nerve pain but obviously I cannot say that is what it si.

These symptoms have me terrified at the moment.

I’m convinced I have some neuro degenerative disease and I will be dying soon.

Few months ago I visited my GP who referred me to a well-known neurologist. He ordered an EEG and brain MRI and conducted a physical examination. Sent me home saying nothing is wrong – everything seems normal at the moment. I decided to follow up the ringing ear in isolation as well and visited a hearing institute who conducted two tests – a hearing test that indicated that my hearing is still in great condition. The 2nd test was something to do with the nerves in the inner ear – some probe is pushed into the ear with some signals fired to test whether the nerves and little hairs are responding correctly – which again, was still good. The specialist said that in the absence of hearing loss and problems identified with the nerves / hairs in the ear and obvious brain problems that the neurologist would have seen on the MRI, there isn’t much she can offer other than saying that the cause of the ringing must then “be systemic” i.e. something else in the body such as nutrition or stress etc.

I can feel my symptoms progressing and they’re not going away. I am terrified and don’t know where to turn next.

Some things that could be influencing this:

•Stress. The last two and half years of my life have been stressful and anxious. Both work and personal life have been tough but most stress I think came from my home life which changed a lot with daily marital problems – no resolution, no divorce, just and endless battle every single day for the last 24 to 30 months. Don’t think I’ve been able to relax or even just be my normal self a single day or even part of a day.

•Cholesterol. Mine is very high. I’m taking medication for it and trying to work on it.

•Potential sciatica or something similar. I mention this because my symptoms seem nerve-related. I had a few sporting injuries years ago that were never officially diagnosed but for me is like sciatica. I have bad lower back pain which is not muscles with a constant annoying sensation in my left buttock and hamstring which doctors told me was a damaged nerve. There is no pain shooting down my buttocks / legs though, just a constant “sensation” which indicates to pinched, damaged or irritated nerve. This has been going on for probably 6 or 7 years. At some point, doctors had me on Lyrica 75mg for the sensation which helped but I felt the impact on my brain (caused some confusion or sense of slight drunkenness) and stopped using it long long ago. Also saw a physio and few other similar specialists doing exercises but didn’t make much of a difference.

•Sleep Apnea. Couple of years ago I was diagnosed with sleep apnea and got a CPAP machine. I didn’t really believe the diagnosis and I have not yet found a mask that I can sleep with so have not really been using the machine.

Again, I’m terrified and I’m hoping to find anyone who have experienced these symptoms or gone through a similar journey.

Thanks for reading!

James T

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