matus82 23/02/18
Last reply 4 months ago
new symptoms.. yet no MRI activity ?!

Hello,

so I thought I would highlight what seems to be happening to me lately.
few weeks ago I had a follow up MRI of my brain since discovering 6 non active lesions last year. The results are good ( no new lesions and no inflammation seen).

Yet I am getting new symptoms. They are very mild, but since about 2-3 weeks ago I am getting the following:
mild pain behind my eyes ( usually during the evenings or mornings).
a mild tightness under my calf muscles ( spasticity??) – not effecting my walking or coordination at the moment, but is present since about a week ago.
tingling in my left toe ( comes and goes during the day)
tingling in my right wrist

since I am still not diagnosed, I personally think this is just a matter of time, but what I am trying to understand is if I am shifting to a PPMS or RRMS.. because I cannot identify a relapse. So my question would be, can you identify the type of MS from symptoms alone or is a MRI/Spinal Tap the only way to diagnose it?
Because over the course of 2017 and until now , I am getting different symptoms (some come and go and some stay), but no activity on the MRI/spinal tap of both head and spine. My neuro therefore stands by the fact that I do not have MS, as I am not right now meeting McDonald criteria
But here are all the symptoms I had since 2017:
-heat intolerance ( getting sweaty more quickly – this is persistent)
-bladder issues ( frequency of urination increased – this is also persistent)
-mildly tired over the course of the day ( comes and goes)
-tingling in my hands that last a few minutes in the mornings (comes and goes)
-had 3x blurry vision in one eye for few minutes and went away over the course of 2017
-muscle spasms randomly over the body ( lasts few minutes and disappears and comes and goes)
pain in the back of my eyes – few times a week comes and goes and lasts under a hour.

It looks like quite a few symptoms therefore I do not believe it is just not related.Anyone experience something similar or is there any theory what might be happening here?

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isaacson72
4 months ago

I’m no doctor so I can’t say for sure, but the eye pain you are describing could be dry eye. I have dry eye and those are the same things I experience. Sometimes stabbing pain behind my eye, other times just achy pain behind the eye. Could be a sinus issue too. I always think it’s MS and go to the eye doctor who looks closely at my optic nerve — it always looks great (knock on wood). It’s just dry eye or a sinus infection, for me. Not saying that’s it for you, I’m just saying it’s not always ms! 🙂

But for the rest of your symptoms, I don’t know. I wish I could help, I know the uncertainty is awful.


stumbler
4 months ago

@matus82 , unfortunately, MRI scans do not show the full picture. And, that’s dependent on the strength of the scanner.

These present symptoms, are they new to you or are they recurrences of older symptoms? It could be residual damage from the existing relapses. If it is residual damage, then it could just be “grumbling” to indicate it’s not happy with you. So, are you stressed or over-tired, to bring this on?

As to your lack of a diagnosis, the McDonald criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) were revised last year. I wouldn’t get concerned regarding what type of MS at this stage.


matus82
4 months ago

thanks for the reply @stumbler and @isaacson72.

if i look at each of the issues I am experiencing and i isolate it, there could be other explanations, but looking at all of them it seems to be too big of a coincidence.

@stumber to answer your question. I am having some symptoms from last year (heat intolerance, bladder issues… etc), but unfortunately I got new ones too… the muscle tightness is something that i only started noticing in the last 2 weeks. it was definitely not there last year. And the pain behind eye was also not there last year…

I have checked the revised McDonald criteria, but it seems i am not meeting it ( yet?!), no distortion in space and time, no bands in spine or lesions in spine. “only” lesions in brain non active at this point…


matus82
4 months ago

I think time will bring a accurate diagnosis… there probably isn’t enough evidence yet, but body is already reacting to it…


stumbler
4 months ago

@matus82 , as suggested above, get yourself to an optician for an eye test. They can see if there is anything neurological going on………


affibelle
4 months ago

Hi,
I wouldn’t get too hung up on which kind it is…personally I’ve been rrms and didn’t progress to SPMS until 20 years later. Some people with PPMS seem to have symptoms a lot less than mine and RRMSers much worse than mine so it’s all relative. As far as what you are experiencing it could be “grumbles” or maybe you are going to be sick at some point ie have a cold or a virus on its way. With the eye problems I’d get that checked out if it’s causing headaches…not everything is attributed to the MS so keep on top of your health. Also although we have Spinal taps and MRI scans they don’t pick up everything. Some scanners aren’t strong enough to pick up everything. I personally feel we have a responsibility to look after our bodies whether MS or not. Exercise, eat well, meditate and do the things that make you happy…love to you, keep healthy X

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