I'm 47 and have had sensory issues all my life. I've also had a lifelong fear of MS. A few years ago a friend of mine suffered a TBI and I thought it was weird that the symptoms she described were so much like my daily life. I ended up seeing a research neurologist who specializes in pediatric neurological/sensory issues and she diagnosed me with sensory processing disorder. (she is a specialist in SPD and there are not really any neurologists that specialize in adult SPD). The sensory stuff has gotten much more acute in recent years and I don't know why. About 1.5 years ago I started noticing some visual stuff- blurred and double vision, extreme night blindness/senstivity to headlights, etc. I figured it was normal aging and I needed glasses. So I saw an opthalmologist and found out my vision was nearly perfect. The eye doc told me to see a neurologist. I ended up seeing a neuro opthalmologist who said my eyes were fine and I was having some kind of migraine stuff (though no headaches). Around the same time my orthopedic doctor ordered a brain MRI because he wanted to rule out MS as a source of the weird joint pains I've been having for years, which I've referred to as "traveling tendonitis." I had been told by many other ortho doctors that my pains were related to a history of extreme exercise and possibly herniated discs from practicing self defense. I also had right side weakness though I'm right handed. About 8 years or so ago I started having noticebly less muscle tone on my right side, which was weird. A cervical spine MRI showed the herniated discs were not pressing on anything that would result in the right side weakness.
The brain MRI showed white lesions on my brain, but the two neurologists that looked at it said the pattern was not that of MS. They also did a nerve conduction test and said it was normal. The visual stuff they diagnosed as optical migraines.
Then I had a series of concussions. One in April ended up getting diagnosed as post concussion syndrome. That led me to a neuro psychologist who did hours of neuro-psych testing. Based on the results, she wants the neurologist to do further diagnostics and review for MS. The neurologist is "sure" i don't have MS and that the white lesions are probably from earlier head traumas.
I don't know what to think. I've had two very different kinds oof health care practitioners suspect MS and two neurologists say that I don't have it. Meanwhile I have had a weird intermittent pain in my right eye for the past 6 years that the opthalmologist says is probably dry eye, though it feels like a dull ache from behind the back of my eyeball. How does any of this make sense?
I'm sorry for this very long post, but I've been terrified of MS since I learned of it as a child, so when the orthopedic doctor said he wanted a brain MRI to rule it out, I almost lost it. Then the neurologists assured me I didn't have it, though they had no real explanation for my symptoms other than sensory processing disorder and some kind of optical migraines (which does not really fit the symptoms). So to have yet another healthcare provider say she wants another review for MS, I'm kind of at my wit's end.
How can you tell if it's brain injury/damage or MS or sensory processing disorder? Especially when there ARE white lesions on the brain, but they don't match the pattern for MS?
I feel like I'm being put in the middle between the neurologist and the others and have to insist on another review when the neurologists are sure I don't have it. What now? Should I see an MS specialist? There is an MS clinic here, as that's where I saw the neuroopthalmologist, but I don't know if that's necessary or not.
While I can't say one way or another, I can share with you the specific diagnostic criteria for MS:
If you want to explore the MS possibility further, I'd definitely recommend someone who specializes in MS.
Jess, MS Navigator