Ms symptoms i see spots on mri doc says im fine

This is going to be long but i could really use some support/advice.

So ive been dealing with ms like symptoms for about 4 years now. It started after i had my daughter in 2020. Started with my right eye. Every symptom of optic neuritis. I saw a retinal specialist who said whatever is going on is in my brain.

Ive gotten multiple mris now. Some have been absolutely terrible quality. Which has been great so ive had them redone. Im in the states but id honestly like an opinion outside of my country because i know my care here is craptastic and so is everyone else’s😅

My main symptoms include:
-Righ hand tremors
-Weakness, numbness, vibrating and tingling on right side
-Slurred speech
-Brain fog
-Fatigue
-Pain when i move my eye, double vision and loss of peripheral (all on the right)
-severe banding pain around ribs
-severe spasms(legs,back,arms feet)
-trigeminal neuralgia(dx with no cause found)
-over active bladder(dx)
-disequilibrium
-dysphagia
-aphasia
-heat intolerance(vision goes dark and blurry)
-lhermittes sign

There are more but those are the main ones. They flare up together often too and last days to weeks. Baclofen is the only thing that helps the spasms. No other normal muscle relaxer helps.

As ive stated above ive had multiple mris. My most recent was still iffy quality but it was in a 3 tesla mri. Ive also had every blood test you could possibly think of and more. Multiple forms of lyme, bartonella,lupus(x4),parasites,heavy metals, mold, vitamin deficiencies. Ive had every hormone tested multiple times…that includes my thyroid(tpo,tsh,t3 and t4), sex hormones, cortisol, prolactin, acth. My a1cs been tested as well and its perfect. I had multiple negative inflammatory marker tests. My hearts good, my kidneys are good, liver, lungs etc. Ive had cts, mris, xrays…i have no bulging discs in my tspine…i have a very slight buldge in my cspine but its barely noticeable. I have no other skeletal issues with my spine. Ive been tested for crazy rare diseases…ive been tested for nmo(x3),mog, mg and lupus.

Every time i get an mri i get the results for myself. I always double check them because radiologists have been wrong for me many many times. When i go through them there are about 5 spots in my brain that show up every time. They light up with contrast. Every time the doc tells me its all normal…one doc told me that a very obvious oval shaped hyperintensity on my optic nerve was “just a vein” but my opthamalogist said that was incorrect. Every time i get the “everythings normal” response and honestly my doctors start acting very weird with me after scans. They get real disconnected, rude and sometimes patronizing. I have positive rhomberg sign too and they always write that its negative.

My newest neurologist was the first doc ever to acknowledge i even had t2 hyperintensities in the paraventricular areas(consistent with ms). The most recent mris i had done were in a 3 tesla mri ordered by that doctor. Of course i saw the same 5 spots but this time i saw 2 more. I also saw some hard to see but hyperintense spots on my spinal cord in the exact region where i get my banding rib pain. I also saw large dark oval shape on my cervical spine on a t1 scan(usually lesions show up as dark on t1 scans). I mean this was a perfect oval. In a spot that would explain a lot of my symptoms. There was also a hypo intense spot on my brain stem itself. When i get these scans my doctors immediately shut me out every time.

I had a zoom appt with this new neurologist today because im in an active flare up of this mystery illness. My visions so bad i cant drive. He immediately was like “well you dont have ms…its not possible”. Which is funny considering i havent even had my lumbar puncture yet(its in may). I asked if we could go through the mris together and he pulled them up on my phone screen through zoom. He literally said “with this t2 scan anything bad will glow bright white” well i brought up the spots he addressed as concerning last time because they again where lighting up bright white around common areas for ms. And he was like “oh no thats nothing” and that was it. When i got him to bring up my spinal mri i asked for the t1 scan to show him the dark lesion(that i guess would be considered inactive currently if thats what it is). He pulled up that scan and i pulled it up on my computer. My version showed the black spot…his didnt!! When i tried to find it on his scan he started getting visibly annoyed with me, cut me off and essentially forced us to wrap up the appointment. That was it…i was left shocked….like…i see stuff…i know im not a doctor but ive always been good at stuff like this. I actually am the one who diagnosed my giant hard to miss gallstone and my broken foot because the doctors and radiologists missed it on the scans. I dont know what to do. This is my 3rd neurologist.

When i saw this new doc the first time in person my husband was with me. He confirms that it felt like this doctor was holding back something. Like there was something he wanted to say but held back. He was even confused as to why i wasnt seeing an ms specialist.

Now suddenly hes spoken to my other doctors after getting my records and now he brushes literally everything off. This has happened after everytime my doctors have communicated. My primary literally lied on my records so i fired him. Its like his assumptions about me keep bleeding over to other doctors. Im getting more disabled as time passes and its devastating.

Im sorry this was so long but im lost, exhausted and angry. I dont want ms but its the only thing that lines up so well with everything im dealing with and ive already ruled out like everything else over 4 years. On top of that baclofen helps my ribs, spasms, and throat swallowing/choking issues All while not seeing skeletal reasons.

They say they find lesions that couldnt be seen on imaging on peoples brains who have ms after they die. They say that some of the tiny lesions can cause the most symptoms.

Has anyone else been through something similar? Where they did have ms but doctors just werent looking hard enough because it wasnt some crazy super huge obvious lesions? I dont know what to do. :disappointed:

Hi Knockout. Sorry to hear of your various issues. To answer your question, no not me and after my first MRI I was told I have a lot of lesions ( at that time my only symptom was optic neuritis- more of less complete loss of vision in my right eye).

I’ve been thinking about what you say about hidden lesions etc and I’ve just been watching a video on the Website of the MS Trust ( it’s a UK trust). Amongst other things some points from the video are: that after the age of 50 or so most people will have a few lesions ( I think I remember reading that sometime ago as well); I didn’t know the next point but apparently some people with MS have hundreds (hundreds!) of lesions with few symptoms ( I guess it depends where the lesions are- which parts of the brain have been damaged); I did know the next point and yes MRI scans don’t detect all lesions. The other thing I noticed from the video and MRI images is that lesions , or at least the ones in the video, are quite obvious . I haven’t heard anything about how the smallest / tiniest of lesions can cause the most damage and personally, I find that hard to believe.

Anyway, the general message from this video seems to be that: over time most people develop some lesions ( not quite sure why but I guess it’s just a part of ageing once we pass 45-50 and start to develop a whole range of weaknesses, problems in all organs and parts of our bodies) so having a few lesions is not symptomatic of anything ; the UK the health service uses MRI scans and evidence of lesions as just one part of the diagnosis - a lumbar puncture being another key part of the diagnosis along with a history of other problems.

I’ve never had a lumbar puncture but I hope the results of your puncture this month provide you with some certainty one way or another, and if it’s not MS then I hope you can soon get to find out the cause of your issues/ symptoms.

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Thank you for your response! :smiling_face: so i just barely turned 30 a few weeks ago. I don’t think id have a lot of age related lesions yet. If thats what they were the doctor would mention that. Instead they actually gaslight me and give me incorrect anatomical explanations. what I’m seeing on my mri is a very large oval shaped hypo intensity on my c-spine. I also see multiple hyper intense spots on my spinal cord as well as a few on my brain…with central vein sign.(if you haven’t heard of that i highly recommend reading about it. Its very interesting). I also have an oval shaped hyper intensity on my optic nerve. My opthamalogist even agrees that it is for sure not a vein on my optic nerve like one neurologist tried to claim.
All of the spots that lit up or were extra dark(depending on the kind of MRI) in my spine are in the exact right spot for symptoms that I’m having. I dont even think my doctor actually looked at the scans himself. I was literally barely able to speak when i went to my first appt with him and he noted that i spoke fine. :sweat_smile:

I really don’t want this disease. Its really not that……it’s just that everything lines up. whether its ms or something similar to it there is something going on thats damaging my brain and spine. When i look at those spots they fit every check off for demyelination. These doctors act so weird with me. My husband has seen it too. Hes seen me have certain results for clinical tests that for sure were concerning and they marked off everything as normal. I feel like I’m losing my mind. :disappointed: