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Brain Issue
36M, 240 pounds, 6' 4", White, no drinking, no smoking, no drugs.
Primary complaint: No stimulus in feet results in unpleasant sensations in the feet. Any stimulus restores normal sensation.
The sensations are hard to describe, something to the effect of, something vibrating, pulsating, shaking, pressure moving among the surface, pulling and pushing of the feet. Any stimulus stops the sensation: Movement, touch, even if I someone else pulls the blanket over my feet (no movement at all in my body) while the blanket is passing over as it moves the sensations are stopped the very second, while the blanked stops the sensation is back the very second. I do not feel the sensations when I sleep, so I get 7-8 hour sleep.
The sensations started on big toe on the right foot and since then spread to the entire right foot and a bit to the knee, recently started on the left foot but to lower degree.
Medical Investigation:
Done MRI of the Foot, Lumbar Spine and Brain - All Clean.
Done Blood Tests - All in norm, except Vitamin D (21).
Done Nerve Blocks to the Toe (Where the sensation started and most strong) and Ankle to no effect.
Tried Gabapentin (300mg /day), Pregabalin (150 mg/day) to no effect (no positive or negative effects)
Tried a trial of Mirapex (up to 1 MG) as neurologist suggested as a way to exclude RLS (Restless Legs Syndrome) to not effect.
At this point, I suspect that something is messed up in my Brain sensory system that interprets lack of stimulus from the feet as weird sensations.
No visible external issue, all medical testing incl. imaging are normal, but the sensations are very strong.
I did not find anything online that matches this problem and after countless of doctors and procedures that did not identify the root cause, I am hoping maybe someone can help with shedding a light on a diagnosis to help identify a cure.
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@denga
I'm sorry you have this medical mystery going on. It's so very frustrating to try to explain something others can't see.
Is your main concern that it's something you can't live with or that you're worried the root cause may be something serious? I've learned that not every weird sensation is something serious.
You'll find a lot of people on these message boards have weird sensations with no real answers. My son and I have a rare progressive hereditary neuropathy that causes a lot of weird sensations and issues. Symptoms started in our teens or earlier. I'm now 64 and my son is 40 and it's just part of our normal.
I only notice a lot of my weird sensations such as internal vibrations, fasciculations, tingling, pulsating in eyes, tinnitus, etc. when I'm resting and it's quiet. If anyone starts talking to me, the TV is on, I'm moving around -- any of that takes my mind off of it and I don't notice the sensation anymore. Maybe one stimulus is overriding another? Maybe our brain is distracted and can't multitask and feel both sensations at once? That doesn't explain why you're having the sensation, but maybe it explains why it stops with stimuli.
I'm betting there are a lot of other people on these boards that only notice some things when still and quiet.
This is not to minimize what you're feeling because it sounds like it drives you crazy. Hopefully, this gives you some peace of mind that if they don't find the root cause, it may not be anything serious. Kudos for being a good advocate for yourself.
I hope you find the answers you seek. 🙂
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3 ReactionsLatest issue to arrive has been aching pain to both my arms bil, at times legs. All those sensations, I first experienced in my jaws, face, and neck, and now extremities. Losing grips, strength and sensation. My gut tells me it's like traveling inflammation, cause in some joints its severe. I'm only 54, and used to work out consistenly, now it's more just staying active. I just started a collagen support, see it that helps these joints.
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1 ReactionYou state all lab tests were normal but you don’t specify what was done? Were magnesium levels done along with a CMP or complete metabolic panel, RA studies, etc? You’ve got a lot of people on this site with a ton of knowledge so the more info you provide the better we can assist you. Do you exercise and especially before bed? I had RLS and calf cramps nightly until I started to increase my home exercise program. I split it in half so I do my routine upon waking and before bed and I no longer have RLS or calf cramps except during very cold days and in snowy weather. You’re a big guy too so added pressure on your big joints is a given.
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3 ReactionsYou bring up some really important points, @jenatsky. Magnesium can definitely help some people with RLS, so it's smart to check those levels. And exercise is huge for many of us, though I know it doesn't always work for everyone, especially if done too close to bedtime.
I'm fairly new here, but I've dealt with RLS for years and @denga's description really sounds a lot like RLS to me, even if Mirapex didn't seem to help him. Sometimes those dopamine agonists don't work for everyone, or they can even make things worse over time for some people.
One thing that was a big eye-opener for me was ferritin. 'Normal' iron levels on a standard blood test aren't always enough for RLS. Specialists often look for ferritin to be much higher, sometimes above 75 or 100, for RLS symptoms to improve. It's definitely worth talking to your doctor about your actual ferritin number, not just if it's in the 'normal' range.