Just diagnosed with Demyelinating Disease

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

Just diagnosed with Demyelinating Disease

Postby MNPB » Wed Jun 20, 2018 2:12 am

Hi .My story so far

I had a baby 11.5 months ago, my first baby & would have considered myself relatively healthy. Never really got sick. I got an infection 9 days after my baby was born and had to be re admitted to hospital . I got over this infection over a few weeks and a few courses of antibiotics. I was always tired and would try and close my eyes for little power naps whenever I could ..I didn't think much of this other than this is the reality of life with a Newborn & nursing around the clock. I also started wearing glasses full time for the first time in my life.

Fast forward to three weeks ago, when we got a heatwave where I live and my right eye started going funny. Very blurry and peripheral vision was non existent - went to two ophthalmologists who said eye looks healthy and prescription hadn't changed so I was sent to a specialist who noticed fluid at the back of this eye and slight inflammation - she wasn't overly concerned but couldn't figure out where it was coming from so sent me for a range of blood tests & a chest xray. As far as I know these all came back normal.

In the past week my eye symptoms have almost disappeared but my right hand is trembling and my right knee feels tingly and numb when in certain positions. ie Driving.. My short term memory is a bit hazy too.
I went to my GP who was very concerned and sent me for a MRI brain & C spine.
Results came back and the report says

"Multiple ovoid foci of signal abnormality in the pericallosal white matter of both cerebral hemispheres , most prominent on the left optic radiation. There is involvment of the body and splenium of the corpus callosum Mild restriction water diffusion within the lesions in the left optic radiation and right fornix.
Spine is normal but slight bulging of the annular fibres C6 -C7. "

It went on to say Highly suspicious for Demyelinating Disease of the brain.


I am terrified - No clue what the findings actually mean as it is all medical talk but Demyelinating Disease seems to be MS??
Tomorrow I hope to meet a neurologist at my local hospital to discuss the results / symptoms & hopefully treatment.

I would love it people could offer me some light in to all of this & my report .

Thank you so much in advance :)

M
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Re: Just diagnosed with Demyelinating Disease

Postby Scott1 » Wed Jun 20, 2018 3:12 am

Hi,

You're right. There is a lot of medical talk. It probably isn't a great idea to rely on people here to diagnose or interpret a report that requires both a neurologist and an MRI technician to build an answer. However, it did say your spine is normal which is good.
It also mentions lesions and they do say demyelinating disease but that doesn't necessarily mean MS.
I do feel it is worth mentioning to the neurologist that you had an infection and a visit to hospital and be prepared to go into detail about it. Identifying a cause of inflammation can be very relevant.
I hope it goes well for you when you see the neurologist.
Regards,
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Re: Just diagnosed with Demyelinating Disease

Postby jimmylegs » Wed Jun 20, 2018 4:52 am

hi and welcome :)

i imagine you've noted there are a range of demyelinating diseases of which ms is just one
https://www.merckmanuals.com/en-ca/prof ... -disorders

i encourage you to allocate at least half your investigative energy to the pursuit of optimal health via preventive public health type professionals, while medical docs help you pursue answers to your diagnostic questions.

the docs aren't likely to refer you to nutrition expertise but after building a human being and then feeding it, you could reasonably expect nutrient deficit to be contributing to your recent experiences. i was surprised and pleased yesterday when i happened to be in a pharmacy looking for an oral syringe and noticed they had introduced dietitian services. i really hope more is done in future to put nutritional health front and centre - it's something that is not (yet) covered under our local health insurance programming. but that's a can of worms for another day ;)

related thread discussing pregnancy, lactation, symptoms and nutrition:

general-discussion-f1/topic19575.html#p189082
(2 pages)

i like the 'happy ending' at the end of the second page in particular:

general-discussion-f1/topic19575-15.html#p193710

hope you find something interesting/encouraging in there :)
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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Re: Just diagnosed with Demyelinating Disease

Postby Snoopy » Wed Jun 20, 2018 5:51 am

Hi MNPB.

The MRI report is not a diagnosis. A Neurologist will need to correlate MRI finding with other clinical evidence (other tests and Neurological evaluation/exam). Don't be surprised if there is more testing needed before a diagnosis (of something) is given.
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