Latent MS?

[Azlemed]

Hi, I live in NZ where the MS thing is a bit behind. My GP says I have signs of MS and suggested because no recent change on MRI that it might be latent MS. Can't anyone help explain this please?

Thanks
Demelza

[Marco]

What your neurologist is calling latent some might call benign ms. With relapsing-remitting multiple sclerosis there are active periods called relapses, followed by periods of remissions. Some people have years, even decades, between relapses that may be categorized as latent. While MRI is an excellent tool, it cannot detect all lesions. So even if the MRI results are clear, that does not necessarily mean there are no lesions or MS activity.


What caused you to be diagnosed to begin with?


There is a profile of MS patients that may have an easier time. A female with diagnosis based only on one symptom and early in life. The symptom being sensory in nature. The first 5 years being relatively flare free and no pronounced disability progression.

Men that present with multi-symptom flare ups, closer to or older than 40. A number of flares during the first 5 years and substantial disability progression. People in this category tend to have a rough go.

[Azlemed]

I had a Cis last May, ended up in hospital with headache and problems using my right arm and leg. First MRI suggested demyelination.

My specialist suggested migraine or MS, the next two MRI have been very insignificant changes. I have heat sensitivity, and still have the headache. I also have some balance issues that I deal with.

I saw my GP (normal dr) this morning to work out what next and after some discussion he suggested latent MS because my symptoms are MS like but no real change in the last 13 months

[Azlemed]

I am 37

The stuff started at 36, I have a lot of sensation changes in my right side too, it's a frustrating situation to be in, was just curious about things as today's label was a new own, he also suggested CFS as well as the depression I have had for years

[Marco]

It is good news if there has been no progress in the past 13 months, but that is the nature of RRMS. A 'stable' MRI is quite different from no disease progression. You just had a flare up last May, so you are in a normal pattern of relapsing then remission. Thirteen months is simply not long enough to categorize a lifetime disease. I would leave it to a neurologist, preferably a MS specialist, to categorize your MS.

If it is your neurologist that is confused about the differences between migraines, MS and CFS then I would seek out another opinion. There are overlapping symptoms between CFS and MS, but why diagnose if there is still doubt? Honestly, you probably should not have been diagnosed with MS, unless everything else had been ruled out. In your position I would probably call the neurologist and ask them to clear up any diagnostic confusion. I'm sorry I could not be of more help.

[Azlemed]

He hasn't diagnosed

It's not a formal diagnosis, not from my neuro, they are ll waiting to see what happens first, that's why this comment was interesting to me,

The CFS is a out there one, the neuro says it's MS or migraine, we just need to see what happens next

[Thinkimjob]

Hello, fellow Anzac.

I truly don't know. If you get an early or CIS MS diagnosis, then maybe that's good. Or maybe it's not. Maybe it is migraines.

The last thing you really want is a diagnosis of MS. It is the end of any sort of normal life, brave and plucky as you may be.

[Azlemed]

Hello

I don't really want MS, but I also don't like not knowing, and being married to a scientist means he likes nice definitive answers etc, and there is definitely nothing like that about this.