How often to get MRI

[Super_sally888]

Hi Quiz and all,

what do your reckon for how often people with MS or suspected should get MRI?  This is in the context that things are apparently not stable....

Am seeing my endo tomorrow.  Have had an exaccerbation of whatever it is going on with me caused by ???? or maybe a cold / sinus infection that is back yet again (had antibiotics for this just a month ago)...

Latest tests (1 week ago) show thyroid possibly still on the low side (TSH is <1, considered low, but FT3 and FT4 are also only just within the low normal range), and the CK-MB still high >2x normal, liver tests (to monitor the INH are normal).  

The last 2 1/2 weeks have been having severe fatigue (hard getting through each day), and severe widespread burning sensations (though there are hot spots).... It even woke me up two nights ago - a most unpleasant first!!  (think it was exaccerbated by the A/C going off.... but my body was not hot... just the widespread burning sensations... turning on the a/c again helped and I was able to sleep again after a while.. The burning sensations seem to be getting worse...

Am wondering if I should try again with a neuro consult and push for more evaluations / re-evaluation......... or just try to wait it out...

Oh, saw my allergy dr last week. She is a sweetie! Has been discussing me with her mentors (in US) and all three of them think that allergies are coexisting, not cause of whatever is happening.  They think endocrine basis, or something else....

& no antibiotics yet for the sinus / cough thing - try to wait it out rather than getting more meds - she said my immune system is already stressed enough without challenging it with unnecessary meds - but to see her in a week or so if it doesn't go away....)... it's she who insisted I go back see my endo who is the coordinating dr...

Thanks all. Again! :)

S

[Super_sally888]

Other noticeable recurred symptoms include numb/tingling tongue, lips and mouth (that definitely hasn't been around since the first time (nearly 2 months)...

Trouble finding words (feels like my brain is just slower than usual) - really just have to take a few seconds before I can answer.... hahaha...  devastating for a motor mouth like me, and heaven for my friends.... :)

[Super_sally888]

Hi Quix,

Thanks for your reply.... how are YOU going?  Recovered from your trip?

Isn't it wonderful how this forum has developed.

Things hadn't resolved completely between now and the last time (July), but it was way better than the last two or so weeks .... maybe about a month or a little longer - haven't been taking note of the times...  

...the fatigue came first, then the sensory stuff started intensifying.. (the burning stuff happened last time but didn't last long and then nearly went away - I kind of thought it might be a stress / drug reaction or something...)... guess I was wrong... been taking prescription B vits, so far no noticeable difference.

Ambient heat seems to make the burning sensations worse (that's not a good sign).  BUT moderate aerobic exercise seems to help, at least temporarily with energy levels and first increases, then reduces the sensations.... maybe the effect of endorphins, etc....

On a good note, the visual stuff is much improved.... still there - but kind of back ground compared to the last time....

Oh dear, the things our bodies challenge us with... isn't it just a shame we can't observe this from a distance rather than having to experience it first hand...

Thanks again.  Will ask Doc Mike tomorrow.... is >6 months since the last brain MRI...

Maybe another neuro (I feel like I'm neuro shopping here)?

There's one more neuro I know of (he is apparently excellent, medical director of one of the best hospitals here (though that doesn't guarantee anything), into research, still has a patient caseload, and is a close friend of the family who has 'adopted' me here.

I know him already cause I have stayed at his beach resort last New Year (invited again for Christmas this year), and get to regularly attend art exhibitions hosted by him...   very nice man.... (though that doesn't guarantee anything..... at least for the sake of my 'family' I hope he would be thorough...)

The Mum wants me to see him anyway - 'cause she thinks I'm putting too much emphasis on how I'm feeling and wants him to reassure me' - though she is concerned about me being so obviously tired.   But so what, if he's good, I'll take him anyway / anyhow.... and if he's not going to pick anything up I'm gonna give up   :)

.. but bad thing is if he brushes me off I am sure no other neuro would touch me...

Lots to consider... Thanks again for your excellent response. Have a great evening.

S

[Quixotic1]

Hi, there!! So glad to see you, but not with this news.  The worsening fatigue and increasing burning paresthesia would be considered by my neuro to be a relapse.  Having training in Immunology/Allergy, I totally agree that this is NOT the result of allergies.

If someone is being watched after what might have been an initial presentation of MS, generally the MRI of the brain is repeated in 1 to 3 months.  Did you have an interval of at least a month where your symptoms were stable with no new one's?  If so, your new or worsening symptoms would be considered a relapse and a new MRI WITH contrast is indicated.  I think you need to see the neuro again and if he/she agree this could be a relapse - if it is MS - then the spinal tap is definitely now in order.

In my mind it's time for a revisit of the neurological side of things.  Good to hear from you, though.

Quix

Either kind of infection, bacterial or viral, is a known trigger of MS relapses.

But, I also agree that with those two symptoms - fatigue and paresthesia's - thyroid could still be the culprit.  What goes against this is improving TFTs and a sudden resurgence of the neurologic symptoms.