Do you think I may have MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Re: Do you think I may have MS?

Postby NHE » Sun Apr 22, 2018 2:55 am

Patraw wrote:Neurology asked me if I'd ever had a CT Scan, EEG, and some other tests (which I haven't), so, it sounds like they're planning on giving me the works when I do go in.

MRI, with and without gadolinium contrast, is the standard imaging test for MS. CT scans use a very high dose of x-rays. For example, a typical CT scan of the chest uses the equivalent x-ray exposure as 270 regular chest x-rays. Therefore, it's best to limit the use of CT scans to when they're absolutely necessary.
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Re: Do you think I may have MS?

Postby Patraw » Mon Apr 23, 2018 8:44 am

I already had the MRI with contrasting agent test, but, my primary doctor isn't sure what's causing the brain/spinal cord lesions that revealed, so, more testing obviously has to be done to try to narrow things down. I've never had a CT Scan before, and the only other X-ray I've had in decades was the orbits scan of my eyes immediately before said MRI earlier this month (I took metal shop in middle school, so, they had to make sure I didn't have any metal fragments in them, which, thankfully, I didn't.) I know radiation isn't great for you, but, if the CT Scan can help them get a definitive diagnosis for me, then I'm for it. From what I've read, the dangers of CT Scan radiation are pretty low and generally outweighed by the potential benefits.
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Re: Do you think I may have MS?

Postby Patraw » Tue May 15, 2018 1:03 pm

Just an update. I went to the optometrist for an eye exam yesterday and he said that my eyes looked healthy to him in general and that my eye muscles and optic nerves were good--he didn't notice anything that would point to MS as far as my eyes are concerned (although he was also quick to point out that doesn't mean that I don't have it). He also said that, in MS, it's more likely that I'd lose sight, or have poor/blurry vision, in just one eye, which is also what my PCP told me, but, on the other hand, on multiple online medical diagnosis sites, I've also read that double vision is one of the possible symptoms of MS, so, I'm not sure what to think in that regard. My eyeglass prescription was also WAY off (I haven't had my eyes looked at in almost two decades, so, that's no surprise), and I had to get a new pair of glasses (gotta wait 7-10 days for those to come in), mayhap that's the real reason I've been suffering from double vision (I've noticed that my glasses DO tend to make it worse, although I sporadically still see double at times even when I'm not wearing them or haven't worn them for days at a time). My double vision has improved significantly over the last month or so; before, it was constant, and things only about an arm's length away from me were diverging into two images, but, now, my vision is normal most of the time, although, it does occasionally still double (yesterday, on the way to the optometrist in fact), but, typically only when I'm outside, and it's only farther away objects/things now, rather than closer ones. Regardless, I'm sure that my glasses didn't cause the lesions on my brain and spinal cord that showed up on my MRI.

I was supposed to see my primary care provider doctor on the 9th, but his office called, cancelled, and moved my appointment to today . . . and then they called and cancelled again, on Friday, and it's been moved to next Tuesday instead. If I didn't know better, I'd think he was trying to avoid me. :P And I still have to wait to see the neurologist until the 27th of next month.
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Re: Do you think I may have MS?

Postby ElliotB » Tue May 15, 2018 2:15 pm

You may want to consider seeing an opthalmologist.
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Re: Do you think I may have MS?

Postby Patraw » Tue May 15, 2018 2:42 pm

Yeah, I may end up having to do that down the road, depending on how things shake out--it wouldn't surprise me at all if my doctor gave me a referral for just that during my next visit. My PCP was very clear that he wanted me to get my eyes checked out at my last appointment with him, and he briefly touched on the differences between optometrists and opthamologists, but my doctor was also the one that gave me the referral to that particular optometrist and had his clerk call them up and set up the appointment for me while I was also getting my MRI scheduled. I think his main goal was just to try to rule some things out--plus he also had his nurse give me a quick eye check while I was there (the old reading rows of letters routine), so, he knew my eyesight wasn't the best and that I probably needed new glasses.
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Re: Do you think I may have MS?

Postby Patraw » Tue May 22, 2018 9:37 am

I just got back from my appointment with my PCP. The discussion was pretty much what I expected: "Let's see what the neurologist finds." Neurology is beyond my PCP's general expertise, but he gave me a copy of my MRI report and these were the results:

"FINDINGS: There is a lesion seen within the cord posterior to C2. This shows increased signal on the T2-weighted images and causes mild expansion of the cord at this level. In addition, there are lesions within the pons and in the cerebellar peduncle. Again these lesions show increased signal on the T2-weighted images and decreased signal on the T1-weighted images. Above the tentorium, the ventricle and sulci are normal with no shift of the midline structures. The basilar cisterns are patent. There are multiple white matter lesions within the periventricular white matter and in the deep subcortical white matter along the white matter-gray matter interface. These lesions are bilateral, but asymmetric. There are no lesions within the corpus callosum, though there are severe pericallosal lesions. There are a couple of punctate lesions which show restricted diffusion on the diffusion-weighted images. The largest of these lesions is adjacent to the posterior horn of the left lateral ventricle. The postcontrast images show subtle rim enhancement about the lesions within the pons. There is no aneurysm or vascular malformation on the postcontrast images. The orbits and IACs are normal. There is mild mucosal thickening throughout the paranasal sinuses compatible with mild sinusitis. The mastoid air cells are clear.

IMPRESSION: There are multiple lesions within the white matter tracts of both the left and right cerebral hemispheres and within the pons and the brainstem at the level of C2. Several of these lesions show subtle rim enhancement and complete rim enhancement, and one of the lesions shows restricted diffusion of the diffusion-weighted images. The appearance is most suggestive of ADEM (Acute Disseminated Encephalomyelitis). Though Multiple Sclerosis could have a similar appearance. Additional demyelinating lesions (a few words got cut off in the printout here that I can't make out for sure) autoimmune mediated vasculitis are considered less likely. Clinical correlation with any history of recent viral illness or immunization is recommended."

So, I guess it looks like ADEM is the more likely diagnosis right now, but I'll just have to wait and see what neurology says in a little over a month . . .
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Re: Do you think I may have MS?

Postby Patraw » Wed Jun 27, 2018 2:42 pm

So, unfortunately, the official verdict is yes, I really do have MS. I finally got to see the neurologist this morning and that was his diagnosis. In the near future, I've got to get another MRI of my spine, a lumbar puncture, more blood tests, and I'll be starting the beta interferon injection process once I get that squared away with my insurance. Surprisingly, my neurologist didn't want to do a CT Scan, EEG, or anything else his receptionist mentioned on the phone when I first made the appointment, he just carefully went over my recent health history and MRI results with me and did an assortment of simple tests/assessments instead (balance, walking, tapping me with instruments, etc.) I'm not thrilled, but at least I finally know where I stand and can move forward.
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Re: Do you think I may have MS?

Postby jimmylegs » Thu Jun 28, 2018 5:32 am

welcome to the club yayyyy ;)

if you are interested in going off the beaten path a bit to correct any of the known nutrient deficit issues for ms patients, information abounds.

for example:

early bloodwork
introductions-f20/topic28969.html#p247337

testing recap
introductions-f20/topic28969-45.html#p247457

diet info
introductions-f20/topic28969-60.html#p247560

surprising bloodwork update
introductions-f20/topic28969-75.html#p247838

plenty more where all that came from :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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