No Lesions in MRI

[BubbaDanny]

Hi Folks,
I just had my MRI done (my annual) and the radiologist and nero both said there were NO LESIONS on spine or brain.
So my nero basically told me that I didn't have MS and he couldn't treat me. (he was not the nicest person to begin with so this was no shock that he would be that rude)
I have been DX'd for 15 years.
My Lesions have always been on my spine, one light spot on my brain once.
But they are saying there are no SIGNS of lesions. Not just NEW lesions, none at ALL!
I asked to have it done again and pay for it myself... I did - same result.

But yet, I have every symptom of MS and pass every other "test" given.

So, have all my nero's been lying to me over the past 15 years?

I just don't understand how after 15 years this could happen.
I can't work, I have optic myopathy, my left leg does not support me and I could go on and on and on. Trust me... I have MS.

Anyone else been through this type of thing or ever heard of it? I kind of need any help!

Thanks

[0485c10]

Not me, but i always wonder if it could happen to me. being diagnosed changes a persons life much, then bein undiagnosed would do the same. Did you use any ms meds during those 15 years & did he make any suggestions on the transition on stopping meds if he is no longer prescribing?

[wkikta]

Sounds like the Neuro isn't paying attention very well. I had many, many Lesions when Diagnosed, now very few show up. 10+ years on Avonex, I guess your Neuro might say I have been cured since I haven't had an Exacerbation in that time.

[Redwings]

Hi BubbaDanny:

It's not possible to sum up 15 years based on one year's MRIs. To understand what's happened in your situation requires a review of all 15 years' worth of information, going back to the original set of data that led to your MS diagnosis. Your neuros may not have been lying to you for 15 years, but it's possible that they might have been mistaken, particularly if one or more of them made unverified assumptions based on previous doctor's actions. That can happen if you've had several neuros over the 15 years.

It sounds like you have yet another new neuro, who's looking only at one set of information. (I'm making that assumption because it's less likely that a neuro who's been treating you for years would undiagnose you based on one MRI and decline to treat you further.) And in looking at only limited information, it's possible that the new doc has overlooked something and is the one who's mistaken. It's also possible that the new neuro is correct and that you don't have MS, but it will take a review of all 15 years to prove it.

It isn't unusual for a doctor to decline to accept an unusual case (I've had several specialists decline to take me as a patient, with my odd history). So it sounds like you're going to have to find yet another neuro. (Can you return to one of your previous docs?) The more information from the last 15 years you can provide to the new doc, the more beneficial for you it will be.

[hope32]

Wow, how frustrating! I've certainly heard of lesions disappearing (I know at least one of mine--one of the biggest, earliest ones--no longer shows up). I don't know if it's unusual for ALL of them to disappear but if you have copies of your previous MRIs that do show them I don't know why they'd suddenly be trying to reverse your diagnosis. I hope you're able to find another dr who will really work with you and do a better job of interpreting the current data in light of your history.

[BubbaDanny]

Went to an MS Specialist and they confirmed MS is indeed what I have. If you look up on Google you will see many postings in medical journals about how MRI's don't get to ALL areas of the brain etc. Some lesions are just "Hidden"
I just am so lucky that I am one of the 2% of people that this happens to.

of course any neuro worth their salt should have KNOWN this and that is exactly what the MS Specialist said to me.
I can't afford to keep seeing this Neuro since she is out of my insurance network, but have found another in my area.
What is terrible here is all the neuros in town are all in the same practice. There are only two others in town and they are booked and/or really don't take MS patients. LUCKILY there is a new one and a nurse friend of mine works for her and she is in my network! WHEW!

So... if this ever happens to anyone else, now you know what to say. "It happens"

[Citlalli]

I'm "relieved" for you and also curious on what basis the new neuro confirmed the dx. I've lived in many countries and had relapses in various places, always no lesions and then "too few" but clinically told I had MS based on relapse/remission pattern & mobility, etc. issues. Now back in US and again told "it's not MS, bec lesions aren't typical of MS." This pendulum has been very difficult to live with, has cost me health insurance (because I've been afraid the pre-existing stuff would disqualify me) and now apparently keeps me from applying for disability. Seems like a big Catch 22.

So what reclinched it for you?

[BubbaDanny]

All clinical tests (in office) and Lumbar Puncture showed myelin. I guess is what I could get out of it.

Regardless of cost just bite the bullet and go see a MS Specialist. Not all Neuros are that familiar with MS.
and a lot don't want MS clients. Which to me should be a reason to take away their medical license but what do I know... According to my last one I have been faking it for 15 years.

[asiel1]

All clinical tests (in office) and Lumbar Puncture showed mylin. I guess is what I could get out of it.

Regardless of cost just bite the bullet and go see a MS Specialist. Not all Nero's are that familiar with MS.
and a lot don't want MS clients. Which to me should be a reason to take away their medical license but what do I know... According to my last one I have been faking it for 15 years.

Haha. According to mine I've been faking it for seven. I stood up to him, and he backed off. I told him, oh yeah.. well I cannot work because of cog fog, memory issues, and walking that made me hug the walls at work to go to the ladies room. So now I sit home. I should be having the time of my life. Not sitting here asking you what's wrong.

He then said he would continue to treat me, and marked probable MS on my chart.

My advice fight.. meds stop lesions any doc worth his salt knows that.

Dump him like a bad significant other.( If you have not already, sorry cog fog is NO fun.)

LBJ

[SNOOPY]

meds stop lesions any doc worth his salt knows that.

Ummm...not necessarly. The Disease Modifying Drugs are to hopefully slow progression, hopefully decrease the amount and severity of exacerbations and to hopefully decrease the amount of lesions.

There is not any information about the DMDs that state they stop lesions.

[MrsBones]

Ummm...not necessarly. The Disease Modifying Drugs are to hopefully slow progression, hopefully decrease the amount and severity of exacerbations and to hopefully decrease the amount of lesions.

There is not any information about the DMDs that state they stop lesions.

So true... by brain wouldn't look like the swiss cheese it resembles now if they stopped lesions.