What is wrong with me?!

[FaithnHope35]

Hi guys! Im desperate to find an answer. Im a 35 yr old mom of 3. For the past year Ive hab dizziness to where it throws off my balance when things around me are moving. I have headaches off and on and blurred vision. Im also tired all the time and have heaviness,weakness, and even a dull pain in my left arm. I occasionally get a buzzing feeling in my body and tingling in my scalp and legs. I've had two MRIs and they both show spots on my brain but not on my spinal column and the spots have not changed. An MRI I had 10 years ago also showed spots on my brain but that was an incidental finding and none of the doctors seem concerned. I had an abnormal visual evoked test 2 months ago and the sensory test for my arms was also abnormal.M
Sorry I don't remember the name of the sensory test it might be called an SSEP. I also wet the bed once(sorry TMI) but I'm desperate to find answers.Lyme disease test and every other viral and bacterial test was negative.I also have hashimoto but my tsh is ok right now and i just dont feel like this is from my Hashimoto's. My neurologist said MAYBE benign ms but nobody is giving me straight answers and I'm extremely frustrated still don't feel well. I just want to know what's wrong with me so I can at least know what I'm dealing with that can make the best of it.

[supermum_ms]

You are more likely to be dealing with something other than a neurological condition like MS because your brain and spinal MRI's wouldn't generally put MS on your potential causation list....basically if your brain MRI's over a 10 year period are still coming up with "scattered Foci of hyper-intense T2 signal within the subcortical white-matter" MS is less likely to be the cause because scattered subcortical white matter hyperintensities (WMH) are typically micro vascular related.

Subcortical is not one of the 4 specific diagnostic locations required to be dx with MS and because you've never developed lesions in any other location over 10 years, it wouldn't be consistent with what typically happen's with the demyelinating disease process.

If no other identifying specifics are mentioned on the reports they're usually microscopic to 3mm in size, and these type of hyper-intensities are the most common non specific MRI findings.  

You don't mention what, if anything, was abnormal with your neurological clinical exams but there might be something that is significant enough to indicate whether it's a central or a peripheral nervous system issue. You did say...."I had an abnormal visual evoked test 2 months ago" which depending on your results could be a clearer indication of what the 'something' might be, but if your results were only mildly abnormal though that could still be visual movement during testing so technically not abnormal...to give you an idea of abnormal causations;

"Prolongation of P100 latency on one side results from slowing of conduction in the optic nerve from that side. A delayed potential after stimulation of one eye (with a normal potential after stimulation of the other) implies a defect in conduction in the optic pathway anterior to the chiasm on that side.

Acute optic neuritis causes prolongation of P100 latency and is a common cause of monocular vision loss in young adults.  

Also seen in optic neuritis, retrobulbar neuritis, anterior ischemic optic neuropathy, toxic amblyopia, vitamin B12 deficiency, leukodystrophies, vitamin E deficiency, Leber optic atrophy, and tumors compressing the optic nerve.  

Compressive lesions of the optic nerve (eg, orbital tumor) may distort the P100 morphology and reduce the amplitude relative to the contralateral eye."
https://sites.google.com/site/neuro82010/evoke-potentials

"the sensory test for my arms was also abnormal.....the name of the sensory test it might be called an SSEP." i know next to zero about the SEP/SSEP nerve testing, from what i understand though abnormal SSEP results of the somatosensory pathways involving both the upper limbs could be either central ie cord lesion or peripheral ie cord narrowing or compression (cervical spine stenosis) but understanding what means what i'm sorry i honestly don't have a clue, lol the evoke-potentials info explains it but i still don't get it...

Hope that helps a little........JJ

[supermum_ms]

Hi and welcome,

Just to set the record straight, 'benign MS' is very rare with incident rate said to be as little as 4% and by the definition it is the long term absence of symptoms and it can really only be accurately diagnosed in hindsight!

The use of the term benign has become very controversial with many MS specialising neurologists questioning whether benign MS even exists, benign MS is generally a subgroup of MS patients showing little disease progression and minimal disability 'decades' after disease onset, and is based mainly on changes in motor function over decades.

Technically to be dx with any type of MS you would still need to meet the MS diagnostic criteria, so unless those lesions (spots) on your MRI's over the last 10 years have been in MS suggestive-consistent locations and meets the latest McDonald diagnostic criteria for MS i would strongly suggest you take any benign MS comments from your neuro as meaningless.....and on the other hand IF your neuro was serious about the potential of you having benign MS because of your collective diagnostic evidence, he's at best an neglectful #^$&$  for not committing to dx-ing you with RRMS before theoretically categorising it as one of the rarest types, either way please consider it might be in your best interest to get the professional opinion of an MS specialising neuro!  

I hope that helps.......JJ

[FaithnHope35]

Hi!! Thank you so much for your response . I had an MRI in 2008 with white spots and the doctor didn't seem concerned. An MRI had in 2017 and 2018 both said scattered Foci of hyper-intense T2 signal within the subcortical white-matter and it goes on to say these non specific findings can be found in patients with migraines or demyelinating syndromes. All three MRIs say the same thing and there hasn't been a change unless they just haven't informed me . I do not have a history of migraines but I have been getting headaches in the past year with the dizziness and fatigue. The neurologist I have specializes in Ms and he only sees MS patients. I'm not wishing I have MS but I would like some answers. I have the buzzing in my body and it feels like my cell phone was on vibrate and going off and I think it's my phone but it's not. In my left arm get so tired driving that I have to switch arms. I'm left-handed and it's hard because my left arm is so weak and tires so easily. I have told my primary doctor and my neurologist even my endocrinologist but nobody seems to be concerned that I'm more and more tired I even had to change jobs because I couldn't handle working 12-hour shifts and standing.