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Having trouble getting answers
I’ve been dealing with unexplained painful symptoms since 2013 which started with burning/achey/squeezy pain on both knees and inner/on top of thighs. Seems to get worse for a period of time then feels somewhat better but always kind of there. The burning nerve pain that I have can be triggered by pants touching it, bed covers, cool air etc. Also have leg twitches primarily in my legs.
Other symptoms I’ve had are where my right thigh feels stiffer than my left. My right legs feels a little less fluid than my left. Also feel like I have slower visual processing after exercise or if it’s hot out. Not blurry but feel like my brain is moving slower. The burning leg pain has been intense recently, making it harder to sleep. Also have some burning in right shoulder, right bicep, and faintly forearm to a lesser degree.
I’ve had brisk knee reflexes but my neuro doesn’t consider them abnormal or pathological given they’re symmetrical. All other reflexes are normal. I’ve had MRIs of brain and spine in 2013 and 2020 which came back clean. I still have MS concerns and am wondering if could be an early presentation that hasn’t met diagnostic criteria?
Had another follow up appointment in Aug 2025 where I had same neuro exam. Brisk reflexes in knees and everything else fine. Was given T and L spine MRI which was clean.
All MRIs have been in 1.5 T.
Things continue to get ruled out and I’m worried the lesions just aren’t showing yet or too small to be picked up. Does this sound like trending towards MS or am I way off base. ? Been dealing with this since Jan 2013. Any thoughts are appreciated.
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Based on the symptoms you've described and the clean MRIs, it's a good sign that a condition like MS is unlikely. The symptoms, especially the burning nerve pain, are more associated with other conditions that don't show up on a standard MRI.
Have you ever had a skin biopsy to check for SFN(small fiber neuropathy)? Because the symptoms you are describing are classical symptoms of SFN. My close cousin has it, and the way you describe the burning pain and sensitivity to clothing and cold air sounds exactly like what she deals with. Also, it didn't show on MRI, and she was diagnosed when she did the biopsy.
I am just speaking from experience, you should think about bringing it up to your doctor. My cousin manages it great with meds and physical therapy, so it is not something to worry about.
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2 ReactionsI agree with bridgeback2 .
Am sure this is stressful trying to figure this out.
It will be a rule-out process, especially neuro as it is so very complex.
Keep going. The answer WILL come, so don't give up.
You did not state your age, any other existing conditions (diabetes?) you may have, your height and weight, what meds you are on or have tried. Am an RN and know those things are part of a bigger picture when ruling out a diagnosis.
Yes: by all means bring up small fiber neuropathy and insist on a biopsy from your neurologist. If he/she says "No" find one who says yes.
Doctors are also imperfect humans: fallible, and a good near will do what a patient asks, if the request will help them find answers for you both.
Good luck and keep us posted.
Thanks slarson14. I’m a 37 year old male. No diabetes. I’m 6’3” and 185 lbs. no preexisting conditions.
I’ve had 2 brain mris and 3 mris of c,t,l spine. The brain MRIs were 2013 and 2020 and the spine MRIs were 2013, 2020, and 2025.
Concerned that this could still be MS given the burning nerve pain and that lesions just haven’t shown up yet. What do you think?