Sort of new here

[SNOOPY]

Hi Crazyguy.

I feel like I’m talking to a wall when I bring up MS because he won’t even entertain the possibility since I’m not showing lesions.

The diagnostic criteria for Multiple Sclerosis relies heavily on MRI evidence and is rarely diagnosed anymore without that MRI evidence. There is no symptom(s) exclusive to this disease.

Best wishes.

[Crazyguy]

To my knowledge he is not an MS specialist. Not even sure if my area has one close by. He’s done an EMG on my left leg, an EEG to check for seizures, and a sleep study for the same. My wife has told me my legs shake while I’m sleeping for about 5-7 seconds at a time. He seems to think that I have restless legs syndrome even though it went away when they started me on the seizure meds for the TN.

I feel like I’m talking to a wall when I bring up MS because he won’t even entertain the possibility since I’m not showing lesions.

The sleep study only only showed that I have sleep apnea. They want me to come in for a second study to test a cpap. The weird thing is that they didn’t make me stop the seizure meds to do these tests.

I cant help but feel I’m getting inadequate care. I’ve though even I’ve told them my previous psychiatrist suggested that I might have a neurologic disease.

[Seasha]

Hi Crazyguy and welcome the the boards! Sounds like you have found answers for some conditions and are hanging by the limbs on other symptoms. I'm sorry to hear - it must be very frustrating.

I have had vertigo and spasticity (still do), but nothing else that you describe. Oops, memory problems too, but that also comes with aging -lol.

Good luck with your next neuro appt. Is this neuro an MS specialist? Hope you can get to the bottom of all your problems! MS is hard to diagnose, in that they rule out other conditions first.

Please take care and let us know what your next appt. finds, if anything.

[Crazyguy]

I guess I’ve come here to relate to others who might have gone through or are going through what I am going through. I’m convinced I have MS but at the moment my doctors aren’t taking me very seriously because I’m not showing lesions on MRI. They are treating me for other things but don’t think they are MS related.

To start off with I’ll just list what I have been diagnosed with.

Epileptiform discharges originally diagnosed as frontal lobe seizures

bilateral trigeminal neuralgial

balance issues I’m working with the PT with. That’s all they’ve been able to find

I’ve had what I believe was spasticity over a decade ago in all four limbs that lasted for 4 days. I’ve had periods of brain fog and severe fatigue that lasts about a week. About 4 years ago I had ataxia and went to the hospital did an MRI and it was clear. Doctor said it was stress. My memory progressively got worse during these years to where I forgot appointments and obligations. Two years ago I suspected I might have MS and sought help from a neuro. She did all sorts of tests on me and concluded I did not have MS. Some weeks later I developed vertigo, slurred speech, clumsiness, and blurred vision. I went back to the neuro and she thought I had a stroke. Did another MRI and it was clear. Long story short she suggested it could have been seizures or a TIA with no clear diagnosis.

Right now I’m getting a second opinion from another neuro but it’s pretty slow moving. It’s been a pretty frustrating journey so far. Has anyone been through something similar?