"No way it's MS"

[beverlyhill]

Is it possible for early MS to show no evidence on MRIs? At my appointment today he told me NO WAY it's MS because the brain MRI is free of lesions.  I asked if he could run more tests to definitely rule out MS & he said no way because there's absolutely no way I have MS.  He then explained that if I did, it would have shown up on the MRI. I believe him. But the more and more I do research online, the more I realize that further investigation is needed to confirm or rule out MS.  Also, there isn't much written online about whether very early MS (MS that is brand new hasn't been in the person for long) will even show up on MRI's. Anyone know about this?

The symptoms are manageable, but they are still problematic. A lot of the things I used to be able to do effortlessly, I can't do anymore.  Also, I had a case of RN in one eye about 6 years ago which I think is a symptom of MS but not exactly sure.  Apparently my neuro makes me feel like I am wasting his time with my "complaints". I asked him why I am experiencing these symptoms and what I should do about it. And he said "it is not unusual for people to experience problematic symptoms with no clear answer as to what's causing them".  I felt like asking him, well can you at least put even a TINY bit of effort into finding out whats wrong!?  He only suggested I exercise 3 days a week, but my symptoms make it really difficult to do that, which I don't think he's understanding.

The neuro has great reviews, and he's dx'd a lot of people I know with other ailments so I know he's smart and good,which makes me think I should just believe him about the "no way it's MS" thing and ignore/cope with my symptoms the best I can without a dx and meds.

I am moving to MI soon with my family. Does anyone in this community recommend a specific MS specialist there, not just any ordinary neuro, but a specialist? If yes feel free to message me. I would appreciate it. Thank you.

[supermum_ms]

Hi and welcome,

You might find reading our health pages, top right of your screen the yellow icon, helpful in understanding the dx process for MS. You'll find lots of really helpful information in our health pages, id start with 'How Can a Person with MS Have a Negative MRI?'

I cant even offer an opinion on if your sx fit MS because you haven't elaborated, if you are comfortable letting us know what your sx are, you might get a few more helpful hints on what eles it could be, there are a lot of MS mimics.

I haven't a clue what RN is, lol to me that means registered nurse, so i cant even tell you if that is or isn't a sx of MS or if its common to one of the mimics. sorry!

Cheers............JJ

[doublevision1]

It is definitely possible for early MS not to be detected by MRI.  This is my personal experience.  I had a clean MRI of head and neck after being referred due to onset of Lhermitte's.  Symptom later remitted.  A year later, more symptoms, another MRI, this time lesions on my brainstem and c-spine were obvious, and after LP and clinical exam and based on my history of the previous attack, was fairly promptly given my MS diagnosis.

The initial neuro I saw was careful not to say that I didn't have MS.  She said something like, 'I see no evidence of neurologic disease at this time,' leaving the door open to the possibility of a diagnosis of a neurological condition in the future.

I am not in the USA and can't comment on good MS specialist in the area you're moving to, but someone else here can probably help with that.  Perhaps a fresh set of eyes in your new state will be helpful, and if not MS as you suspect, then to work with you to figure out what is causing your symptoms rather than cop out like this guy seems to doing.

[beverlyhill]

Oh I see. Thank you. BTW, RN is retrobalbar neuritis (sp?).

[HVAC]

If a Doctor tells me no way is it such and such and I say okay than what can it be and they can't give me any direction to go in I find a new Doctor. period.

[COBOB]

If you had retrobulbar ON, did they do a VEP?  A VEP is proof of demyelinating disease.  About 50% of patients with ON, have white matter lesions.  ON ends up being the first presenting sign of MS about 30% of the time after 5 years.  

Not knowing what you other symptoms are, I can can say that there are other causes for ON, including Lyme's disease, Lupus, syphilis, other autoimmune diseases and idiopathic causes.    

Many of us have had to deal with "watching and waiting" for things to become clear for the neurologists.  I had one lesion and then 5 six months later.  I also had symptoms get worse over that time.  There is no "requirement" in the McDonald Criteria for lesions on the MRI.  Lesions (specifically Dawson's finger lesions) help to make the diagnosis easy.  

MS is a diagnosis of exclusion.  Once the other diseases are excluded and MS is the only thing left and you have met the dissemination in space and time, the doctor can diagnose you with MS.  This is why it can be important to be seen by an MS specialist or at an MS Center.  MS doesn't always present in the clear and definite ways that are taught in the medical text books.

Bob

[Sumanadevii]

Errrrrr...is your neuro aware of some with MS have zero lesions on their brain?  You can have lesions on your spine only?  

[nate79]

Doesn't seem like your nuero cares, id find one who does.

[jujuminx]

Welcome to the forum.  Sorry you are having a difficult time with getting a dx. That is not uncommon unfortunately.

I am here to tell you you can indeed have MS and not have brain lesions.  They did MRI's for 18 yrs on my with no findings of lesions. Finally they did one of my spine and found 3?

And just because they don't see lesions on MRI doesn't mean they aren't there. Some machines better than others than detecting them.

I would find a new dr. Sorry, not in your area so I cannot help with a referral.

Julie