Unexplained symptoms - Help

New diagnosis and before diagnosis
1

I’ve been having issues since 2013.

Overall feeling of signals not being transmitted correctly.

  • Pain - (primary symptom) Burning/squeezing/achey/numby pain primarily bilateral in knees/thighs, some in right shoulder. Secondarily, less strong in bilateral shins, calves, under forearms. Don’t feel it in my feet or hands. Stimulus such as pants, bed covers, cool wind increase the pain. Like brain is registering pain incorrectly.

  • Pain - Varies in intensity. Pain was at a 7-8/10 for a while, then seems to lessen. Have a while of feeling fine with burning, always kind of there.

  • Pain - Numbness/pins and needles type feeling is typically only there with some sort of stimulus like pants.

  • Stiffness - Right thigh and knee feel stiffer than left. I feel like it slightly impacts my walking. Both legs feel generally tighter, especially in thigh/knee area

  • Legs - Feels like maybe I don’t have as much stamina when standing and thighs are flexed.

  • Muscle spasms - occasional pings all over but mainly legs/arms/stomache. Hyperexcited

  • Visual - Slow visual processing in heat or after exercise temporarily. Trying to read after it feels like I’m taking in the stimulus and takes longer to process.

  • Kicking legs/jerks at night

  • Symptoms came on suddenly in 2013

I’ve had clean brain mris in 2013 and 2020. Clean spine MRIs in 2013, 2020, and 2025. I’ve been through a battery of tests but no answers. I remain concerned about MS.

Am I off base? Anyone else have a similar story? Any recommendations?

2

Any thoughts? Really worried?

3

Sorry to hear how long you have been suffering.

Who did the MRI’s was it GP or a Neurologist as GPs will rely on a report only.

Have you had a physical examination with Neurologist as they are pretty good at being able to tell if weakness is caused by brain/spine lesions or by nerve issues unrelated to MS. I remember mine during examination giving me a technical explanation of how he could tell the difference but for the life of me (always brain fog :joy:) I can’t remember how. Also they can test physically if you have weakness in your limbs and if your reflexes are brisk/non existence and if you have balance and coordination issues.

Another point if a MS Neurologist or a Neuro Radiologist looks at MRI they are the experts in knowing what they are looking for.

4

Thanks Cavworld. I’ve had a regular neuro look at the MRIs and a MS Neuro look at them. Both opinions were that all brain (2013, 2020) and spine (2013, 2020, and 2025) were clean. The physical neuro exam has been normal from my understanding with all reflexes normal except brisk at the knees (shoot up quick). My neuro said this was normal since they were symmetrical and didn’t flare out. No clonus and no Romberg sign.

I’m hopeful that the clean MRIs make it unlikely but legs feel like they’re on fire a lot.

5

Ah I see, in that case if they are ruling out MS but your symptoms continue, I would push them for them to explain what else it could be and their thoughts. There is nothing worse than knowing you are having problems and nobody giving you a reason or diagnosis.

6

I just had another brain mri (this time on 3T) which was clear. That makes 3 rounds of spine mris and brain mris (2013, 2020, and 2025). Am I barking up the wrong tree?

main symptoms are burning pain on top of my knees and thighs bilaterally.