Radiologist vs. Neurologist interpreting MRI

[Fluffysmom]

Hello, I know there is someone who can help me figure out if a respected radiologist was wrong, or if I picked a neurologist that didn't have a clear understanding of diagnosing MS.  The radiologist's Impression was
1. Multiple mm area sized of increased and abnormal water signal scattered throughout supratentorial white matter tracts.  The appearance and distribution of these lesions is far and away most consistent with multiple sclerosis.  Conceivably microvascular disease could present in such a manner, if the patient has an underlying medical disorder such as hypertension or diabetes which predisposes her to fairly severe microvascular disease.( my b.p. is 116/70, cholesterol has been great for years, and blood sugar is always at the lower end of range)

2. Otherwise unremarkable prominence of CSF spaces about the cerebellum is felt to be of no clinical concern, though its exact etiology is difficult to define.

I saw my new neuro this afternoon, who showed me my brain on his computer, asked my questions about my alcohol consumption (haven't had a drop since 1986), recreational drug use, etc, showing me areas that he said were atrophied.  He was sure that the many many white spots were from something like hypertension and how much caffeine did I drink? (1 cup of green tea a day).  He delivered the good news that I didn't have MS.  When I asked how we could explain my symptoms like acute onset tremors, fatigue, incoordination, etc., he looked at me and said " I don't see any tremors".  Now, I have been suffering from this s**t for 5 weeks, shaking, stumbling, feeling like I want to take a nap when I get up, and having it all get worse when I exercise, even sweeping, vacuuming, chopping vegetables, and so on.  I tried to explain myself without losing my cool, about how I've spent years improving my health while dealing with chronic knee, back, shoulder, and SI joint pain, and that I simply wanted to know what I'm up against so I know how to fight. That I've been working around issues for years and am doing everything right, though I've recently gained weight. He apologized for not giving me the answer that I found to fit my symptoms, had no suggestions, and wouldn't look at my spine MRIs that I brought.  He said we could discuss them at another appointment, but after the way he spoke to me, I didn't really consider that an option.

My best friend works with the radiologist, and will ask him to review the MRI, see if there were any errors in transcription or anything that the neuro misunderstood.  After the neuro read the radiologist's report, he really went off on how the report was all wrong and his findings were at odds with his impression and continued at length about where he was wrong.

Hopefully, one of you MRI understanding wonders out there can help ME understand the truth of the matter.  Also, do radiologists always catch spinal lesions on MRIs, when they're looking for disc protrusion and degeneration?

Thanks for any help you can offer!

Kathy

[Fluffysmom]

Thanks, ladies,

I will be brave and have some good books to read and soothing music to play in case I do end up flat on my back after an LP.  And a cooler with bottled water with bent straws and a few bottles of iced coffee next to the bed!

I so agree, a little intense pain is nothing if it gets me out of limbo land and into answer land!  Even better if I can skip the headaches.

Thanks for being so caring,

Kathy

[monotreme]

Kathy,
   Thank you for that information.  That does alleviate some of my fears.  It sure would be nice though., if the limbo landers would get a diagnosis.

  Elaine

[Heather3418]

I have to agree with Rena 150%.  I was so afraid to submit to an LP because of all the things I heard.  Sure it wasn't a run in the park and the headache I did get, did finally go away, but it was the ONE thing that gave me BACK my diagnosis of MS, after it was taken AWAY by my second Neuro.  

I had my LP with flouroscopy, so there was not any need to poke around to find the right spot.

I say if the LP gives you the answers and you only need ONE to provide those answers, then it's time to put away those fears and go for it.  The answers you will get are worth much more than the worry of a bad headache.  Which in some people there is NO headache.

Blessings,
Heather

[Rena705]

Oh, Honey...If you have to have an LP, the spinal headache is minor compared to the fact that you may get the answers that you have been looking for!

The spinal headache is caused by the level of the spinal fluid being lowered and until it is replenished you will have to lie down and be waited on for 3-5 days!  Does that sound so bad compared to having your answer?

If you drink a lot of caffeine and water after the LP and remain lying down you should have no trouble at all...even going to the washroom, just stay bent over so that your head is lower than your shoulders...NO PAIN!

I hope that I have alleviated some of your worry honey and if you need to have the LP, we will be here for you all the way ok?

Lots of Hugs,

Rena

[Fluffysmom]

Hi, Deb,

I haven't had and LP, and am reluctant since they aren't definitive and the stories of spinal headaches are discouraging, but will submit if my new neuro thinks it is a piece of a puzzle that we need to have.  She comes recommended by my primary care and a neuro-radiologist, so I'm hoping that she will be one of the good ones!

I'll keep you posted!

Kathy

[Fluffysmom]

Elaine, I found this on mult-sclerosis.org, and it came with little charts for each kind of MS.  I have seen similar things on other sites.  I know that with the new treatments that have been used since the following was printed, the time periods are not accurate if one has a dx and treatment. I hope that there are more recent studies that show that Craig and I  and the rest of us in "limboland" will do just fine even if we have to wait for that dx.

Kathy

2. Secondary Progressive (SPMS):

After a number of years many people who have had relapsing/remitting MS will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery. After 10 years, 50% of people with relapsing/remitting MS will have developed secondary progressive [Weinshenker et al, 1989, Runmarker and Andersen, 1993, Minderhoud et al, 1988]. By 25 to 30 years, that figure will have risen to 90% [Ref]

[Deb61]

I'm glad you're seeing a new neuro.  Quix just posted a page about MS specialists vs. neuros entitled "Why an MS Specialist?" that may be helpful.  I see a regular neurologist who is very competent and knowledgeable about MS, but I'm very lucky from hearing all the horror stories out there.  

Have you had an LP?  That may help with a diagnosis of MS.

Please keep us posted after you see your new doctor!

Deb  

[monotreme]

Hi Kathy,
  Craig was told the lesions have to be greater than 3mm.

Can you please tell me where you saw the charts on progression of MS that you mentioned??

I would like to see them.

Thanks,
Elaine

[Fluffysmom]

Thanks, Elaine, for adding your experience and suggestions. I'm glad that your husband has found a good MS neuro.

Here's my latest update:  My friend called the neuro-radiologist who originally read my MRI and told him what had happened to me and what had been said about his findings and impressions on my brain MRI.  

He immediately pulled my MRI up on his computer, carefully went over it again, and told my friend that he stands by his findings and impressions, and suggested that I go see a female neurologist that my primary care doctor had suggested in the first place.  Two referrals from trusted medical professionals; I called an made an appointment yesterday.  Of course, she can't see me until April 8, as she only works two days a week.  I saw the other neuro in part because he could fit me in sooner.  I'm learning, I'm learning.

My primary care physicians office called me today to verify that I wanted my records sent to another neurologist, so I had to confess my mistake and admit that I should have taken my doc's advice to begin with.  Sigh!

I'm actually having a fair day; I made it to my water aerobics class and bobbed around for the whole hour, working muscles all over my body in a gentle way.  It felt really good, and I'm only now, 5 hours later, starting to feel like I need a nap.  

There were so many hyperintense T2 lesions on my MRI that I should meet that criteria, of 9 or more, unless they need to be a certain size (no one has measured mine, that I know of).  I want to get on with the VEP and whatever other tests.  This waiting for a diagnosis stuff is the pits!  If I do indeed have MS, I want to start on a drug that will slow the progression.  I don't know how long this has been hiding out in me, and I've seen the charts on progression.  Deep breath...

Thanks for being there, all of you.  I'm going to check out some other threads on the forum to see if I can be there for anyone else.  Just as soon as I wake up from my nap...

:o)

Kathy

[monotreme]

Hi Kathy,
   My husband has twenty T2 hyperintense lesions in his brain, but only four are greater than 3mm, and you need 9 T2 hyperintense lesions to get a MS diagnosis from a MS neuro.

  My husband had gone to a neuro who was a MS specialist in NJ who had MS society award plaques all over his office, and he never even read my husband's MRI films.
  There are good and bad neuros, whether they be MS specialists or not.  My husband has finally found a good MS neuro, but remains undiagnosed at present.

  I would ask around to any medical people you know, even the person you know who works for the radiologist who read your MRI, who a good neurologist is that they would recommend.  I would only worry about the reputation of the neuro being good, more than whether they are a MS specialist.
  Just my opinion..

  Elaine

[Fluffysmom]

Thanks, Stacey,

It does help to know I'm not alone.  I appreciate your encouragement.

I'll check out the Health Pages while I hang out in Limboland!  Tomorrow, I'll find an MS specialist, even if I have to wait a month to get in to see them (or more).

Kathy

[SOONERMOM]

Welcome to the forum!  Let me assure you that you are not alone in your situation.  I am struggling with the same exact problem as you.  I have numerous white matter lesions that the neurologists say are "not typical" for MS, but both radiologist's MRI reports say demyelinating disease and MS.

I have been told by a couple people (including my GP) that radiologist are known for writing the "worst case" scenario in their reports because they are worried about getting sued.  I don't know if this is true, but this is what I  have been told.

It is extremely frustrating as a patient to have symptoms that no doctor can explain.  I am currently looking into Neuro #4...even though I just swore off seeing any more a few weeks ago!!!      UGGHHHHH

Anyway, I totally feel you pain!  I would seek out an MS specialist (if your neuro isn't already one) , like Rena said.  I would want to be followed closely because you need to have your reflexes tested , as well as the other neurological tests, to see if there are any changes.  I have had changes over the past 5-6 months.  Another MRI needs to be done to look for changes there as well and there are other MS tests (evoked potentials, LP) that can be done.  There are also many MS "mimic" diseases that can be tested for and ruled out.

You might also find the Health Pages informative.  They are listed on the right.

Welcome to Limboland (the undiagnosed),  you have found a great place!

Stacey

[Fluffysmom]

Rena,
I checked the MS Society list of MS specialists in my area and they were out of network for my insurance, so I called a neurologist that a friend's mom went to.  I asked if he was good with MS, and the receptionist said "all of our doctors see MS patients".  My mistake.  My well-being is worth some extra money, and out-of network isn't too bad with my insurance.

There are lots of lesions in my brain MRI, which look to me just like the ones on MS websites.  I'm not looking forward to a lumbar puncture, but my primary care doctor told me how to handle a spinal headache if I get one.  I know they're not definitive, but they can add another piece to the puzzle.

Thanks for responding to my sounding off.  I was so upset; mostly because I couldn't stop a few tears from escaping when this dr. was making me feel like dirt.

I'm smiling now, going to change my mood in my profile!

Kathy

[Rena705]

Hi Kathy!  I sure wish I could be more help but I do have a question?  The Neurologist that read the MRI...was he a regular Neurologist or an MS Specialist?  I hope that you are going to say a regular Neurologist because that will give you more options and it appears that you need some more options, to me at least.

If this was a regular neurologist, he would not have the training nor the experience an MS Specialist has to read an MRI.  An MS Specialist can also offer other various opportunities to find a diagnosis that a neurologist would not including a proper neurological exam and possibly a lumbar puncture which would be a possibility if the MRI is inconclusive as if there is banding in the spinal fluid and no lesions on your MRI, you can still have MS!

Is this Dr. a neurologist or an MS Specialist?

Rena