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Unusual symptoms- MS?

In January 2013 I began having sun burn like nerve pain on the top and inside of my thighs.  Tight pants or cold wind would make the burning worse.  I have also had muscle twitching all over but mainly in my feet, legs, and arms.  I have also had joint/muscle pain in my knees/thighs.  Brain fog will come and go.

I had clean MRIs, clean EMGs, but 3 positive ANA tests that were as high as 1:640.  Although the ANA test was positive the tests for specific Autoimmune diseases have been negative.  My vitamin D level was low but is back to normal and symptoms still persist.

I’ve lived with the nerve pain predominantly in my legs for the past 7 years, some days worse than others.

Fast forward to 2020, and I have more trouble concentrating, feels like I’m seeing but not processing fast enough/concentrating.  Diagnosed with PLMD, and more nerve pain in the same spot in my thighs, arms, shoulder and back.  Haven’t been able to get any answers.  

I’ve been hyper focused on symptoms recently and scared it could be MS.  What could this be?
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987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

Based on your test results and symptoms it's highly unlikely to be caused by a neurological condition like MS, it actually sounds more suggestive of a peripheral nerve issue to me....

I dont know much about periodic limb movement disorder (PLMD) apart from there being an association with Diabetes and anemia (family issues) and its a sleep movement disorder that use to be called sleep myoclonus or nocturnal myoclonus.

Your PLMD might be causing you more disrupted sleep with your current higher level of anxiety, which in turn could be one of the reasons why your having some difficulty processing and concentrating at the moment, stress worry will always negatively effect your sleep quality too so it might be worth talking to someone about how being in medical limbo is impacting you.

The only other thoughts i had was to do with any medications you might be taking, most people dont consider the possibility of their sympotms being associated with a single or combiined medication, and a recomendation of getting updated blood and spinal tests  done if its been awhile.

Hope that helps.........JJ
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Avatar universal
The main issue I'm focused on right now is visual sensory overload.  It seems like there's too much going on for my brain to keep up like in the airport.  My mind keeps going to MS but I pray its not.
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3 Comments
There really inst anything within your mentioned tets results and wide spread symptom pattern for it to be suggestive and or consistent of a neurological condition like MS....

Hyper focusing on your symptoms and worrying about it being caused by an undiagnosed medical condition that your constantly reading about will definitely cause you a lot of additional stress, and health related anxiety can result in things like visual sensory overload but keep in mind that busy bussling places like an airport is a stressfull place to be for most people.....IF your health related anxiety is really high, its possibly making you over read into things, its in your best interest to  re focus your attention on getting on top of your anxiety before it leads you astray.

Look after yourself.......JJ
My body just feels off.  Nerve pain primarily in my thighs and feel like I'm in slow motion cognitively, like my brain can't process all the stimulation.
There are just so many different types of things that could be an explanation, and or making things worse for you eg, unbalanced diet, dysfunctioning thyroid, pain medication, medication side effects, poor sleep quality, not enough sleep, anxiety and depression, vitamin deficiency, viral infection etc etc etc that sometimes when the answers are not clearly showing up in the test results, that it helps to refocus on making incrimental changes something you can identify would help improve your quality of life eg talking to family doctor about needing some mental health support, looking into basic changes to your nutrician and fitmess levels, trying alternative pain solutions etc

Take care........JJ
Avatar universal
Update - My MRI of my brain and C-spine on a 1.5T was clear.  EMG/NCV was also clear.  Still worried that I could have MS as my thighs continue to burn and feel like my visual processing is slow.  Hopeful that 2 clean MRIs, 1 in 2013 and 1 in 2020 make it unlikely...
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6 Comments
Also, my neuro said my knee reflexes were "brisk" but not pathological/abnormal.
Diagnostically speaking your test results would be pointing away from a neurological condition like MS so the question you should be asking your family dr is 'If its not MS, what else could cause these symptoms?'..........JJ
Thanks supermum
Supermum - Do you think Im still at risk of having MS and that i just haven’t hit diagnostic criteria yet based on my description, burning throbbing thighs/knees with perceived slow visual processing?
The important point you need to keep in mind that you have thats pointing away from a neurological condition like MS being the causation of your symptoms, is that you don't actually have any neurological clinical abnormalities and even your relevant diagnostic test evidence isn't abnormal. IF non of your neurological test evidence is abnormal after years of symptoms, its likely caused by something that is primarily not neurological.....JJ
Update -

I had an MRI of my brain, C, T, and L spines which came back clear in 2020. I still have the burning/squeezing predominantly symmetrical in my thighs which seems to occur almost every day although comes and goes. It's especially painful when I'm wearing long pants. Sometimes I have a little burning in my cheek. Generally have bad fatigue as well.

This is my 2nd round of MRIs (1st in 2012 and 2nd in 2020). Although no lesions have shown up on the imaging (1.5T), I'm still very concerned that this is MS and that the lesions haven't been seen yet. It seems that it can take years for someone to get diagnosed and have clear MRIs for years.

Any thoughts on if I'm still at risk?  Anything else I should be doing....??
987762 tn?1331027953
COMMUNITY LEADER
Your worrying about MS without anything to base your fears on so its just highly likely to be something that isn't a neurological condition like MS......you'd be much better off focusing on the fact that all your MS related diagnostic evidence since 2012 has been neurologically normal, your symptoms and symptom pattern isn't consistent so something like MS would likely not even be on your list of possible causes now.


I would suggest you consider seeking support and guidance from a therapist or psychologist about your years long health related anxiety, which will probably additionally help you become open minded about any possible issues that are being overlooked whilst you've been focusing on MS.

Sometimes there isn't anything you can pin these types of symptoms down too, so when your in medical limbo its usually recommend you make a point to get into your healthiest self ever ie improve your diet, increase your fitness level, priorities looking after your mental health, do something you've always wanted to do like learn to cook, finish your studies etc etc

hope that helps.......JJ  
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