is it possible a neuro will DX w/ normal MRI's?

[lenorekitty]

I think I may be nearing the end of the limboland tunnel but with normal MRI's and LP. Will that actually be possible?

Since 04 I've been dealing w/ MS like symptoms. Blood work up was ran to rule out mimickers, while MS was tossed as a possibility but MRI's were al normal. So I got the "wait and see" approach from my PCP. And a it's mental/emotional from the neuro.

Then in 06 when I was diagnosed w/ optic neuritis. My PCP thought it would finally lead to a definative diagnosis of MS. Neuro's didn't agree...so now I got the "it's not neurological, so I can't help you"  after spending less than 5 minutes with me when all they did was read the report of MRI's not showing any demylination.

On my own I went to a MS specialist...who said "At this time I cannot say you have MS, but something autoimmune is causing neurological symptoms, but I don't believe it's MS" And sent me to a neuro-opthalmologist who specializes in MS. The neuro-opthal...said "not MS, you tests are backwards from MS...as they show slowing of the myelin and thinking of the nerve in the optic tract. We'll just watch you and have you do eye excercises"

Then I started donating plasma.....at first for the few $ they paid me for my time. Then because I realized if I didn't donate at least once a week my more regular symptoms of selectrical pain/funky sensation/fatigue came back. And then I got pregnant.

Well shoot forward, lil one hits 12 months and is only nursing for a few minutes at a time 4 or so times a day (she was exclusively nursing till 9 months) and I get hit w/ double vision, loss of color, hearing loss, vertigo, trouble walking. I avoid the Dr's...well because no help is sometimes more frustrating than dealing w/ it on my own. But at my hubby's pressure I go get my eyes checked. Once again I am told it's optic neuritis...and the opthalmologist and internist spout MS.

MRI's are normal...no sign of demylination.

Go to a new neurologist. And guess what she tells me? "I still don't have a definative answer for you, but MS is probable" I'm like wait a minute....my MRI's were good, my spinal tap was good....all the other neuro's said no MS because those were good. At first she doesn't pay much attention to my records that showed up (I requested all of them, but only one set showed up) because they were from my [primary care Dr...she said that they would just be filled with general complaints. But in end, she spends over an hour looking through my records. See's that EVERY mimicker has been ruled out at least once, even chuckles about them running food allergy testing in their search for some answers for me. See's that abnormal gait, abnormal pupilary reaction, optic disc palor, tremors.....etc are mentioned multiple times. And then tells me that it's well known that MS doesn't always show up in testing in the begining, but that it was probably MS. Now I get to go for evoked potentials. I've only had the visual EP's, she wants to compare the older ones, and do the others.

So many emotions are running through me right now. Elation that for once my symptoms were taken seriously by a neurologist. Nervousness that I might actually get a diagnosis, because no one wants to be diagnosed w/ MS or the stigma that comes w/ having some chronic disorder....but then nervousness that I still might not have a diagnosis because no diagnosis means less treatment options and more people thinking it's psychological.

But boy do I miss my old body...at first I felt like I was suddenly living in some one elses body, but I guess after almost 7 yrs I've had to come to accept that this is my new body, and it comes with limitations. I guess no matter if this new neuro decides to give me a diagnosis or not, I have to learn to live inside this body. But of course I'm gonna keep kicking and doing the best I can to take care of myself so I can take care of my kids.

[lenorekitty]

ess, I wonder if maybe she said 115 and I heard 150 as being the abnormal number for VEP's. I know I don't always hear things properly, most of the time when my 12 yr old daughter talks to me it sounds like she's speaking a different language. But then maybe I heard her right because she acted as if my results were normal. But she did say she wanted to have it done again to compare it and then she went on about how she wanted it done differently than that one, something about electrodes being placed at the back of my head and not just at the temples to check for lesions in the brain stem.. But maybe that was the BAER she was talking about as she's sending me for that as well as SSER's. But I am still waiting on her office person to find out where I need to go for the EP's.

Chanda, I hope you too find answers. I don't know if I will ever have definative answers but it was a nice feeling to not be shrugged off by a neurologist. The visual issues are the ones I have the hardest time dealing w/. And the wait and see approach is quite frustrating especially when you are worried about flare ups worsening your vision with each one. I'm always wondering how much vision I'm going to have to lose before i have answers as each flare always seem to leave a bit of itself behind for me to remember it by.

Thanks for all the support everyone. As much as I would not want someone one else going through this, it is nice to know I am not alone...and that there are people out there that understand. My husband tries his best to understand, and some of it he can as he has diabetic neuropathy from type 1 diabetes. But the rest of the well meaning family treat me as if I just want to be sick. After the birth of our youngest we moved back to CA from TX so she could know her grandparents. My hubby sold me on how it would be better because I could get more help on the bad days with the 3 kids. But I find it hard to deal w/ the comments from family and hard to keep up with the expectations family has out of us w/ helping them out with things, going to family gatherings....etc.

But I will keep you all updated. I will hopefully have some more answers soon as she wanted me back in 2 weeks to go over the EP's and any records that showed up from my other Dr's.
Christina

[patientnurse]

This is the EXACT SAME QUESTION I HAVE! I have a similiar story, one that ends with a neg MRI and neg LP. So alas, I must play the wait and see game with neuro. I'm currently battling some type of vision problem which may or may not be optic neuritis.

Let me know if you get any answers. I would be thrilled to know that someone out there has gotten dx'd being in that 5% category.

Best Wishes,
Chanda

[essdipity]

Hi, Christina.

You, like so many others, have been getting some totally wrong info from sources who are presumably there to help you. This is so distressing.

For one, VEP results are supposed to be about 100. Scores over that but within one standard deviation, up to 115, are still considered normal, but after that they are definitely abnormal. Your neuro should know that, for heaven's sake.

Second, the side efffects from the DMDs are definitely not as bad as what I call the front effects of MS. Do you think all the hundreds of people who post here and who are taking one would still do that if they were so bad? Not to mention the hundreds of thousands of others world wide.

Not that this is you, thinking this. I've heard that before and it maddens me. It should be up to the patient, of course, after lots of thought and inquiry. This is a good place for that inquiry, and you'll find an overwhelming sentiment here in favor of the drugs. Each does have side effects, but all can definitely be managed, and all are certainly better than just letting MS do its awful thing.

As to why doctors don't presume MS and start the patient on treatment regardless, well, many do do that. I was one of those patients, and there are lots more. I'm so sorry that you've had rotten luck in doctors, and can only advise you to keep looking. It's okay to tell them that if MS is probable, you want to be proactive and to help yourself have the best possible outcome.

Please also keep posting. We'll help as much as we can.

ess

[lenorekitty]

IDK why she said the side effects were worse than my symptoms. But I am glad to hear they are not bad for everyone. But she also didn't specify which drug she was talking about. She just said "right now I don't believe you have MS, which is good because the medications to treat MS would have side effects worse than your symptoms" She was a neuro-optha who specialized in MS. But she also did not have any reasons for my tests showing slowing and thinning of the optic nerve. That was in 06, and I've has 2 more bouts of optic neuritis since then.

I can't imagine what else could be going on if it's not MS. They've ruled out so many things early on, especially since my internist in TX had interests in disorders that caused neurological symptoms but were not neurological disorders. When I came to her for the first time she had just gotten back from some MS convention so she was pretty big on testing me for all the things that could cause symptoms similar to MS to rule them out before even sending me to a neurologist.

what ever it is I do hope someday I have answers. But I am wondering if what ever I have been dealing w/ is what caused symptoms I had in high school that the Dr's shrugged off. Before all the symptoms suggestive of MS hit in 04 I had been taken to urgent care 3 times for vertigo spells between 91 and 97, and for pain and loss of grip in my right hand/arm in 91 (the dr had no answer for it and said xrays were fine but if I continued to complain about it he'd put my hand in a cast because there was nothing wrong, wth??? in otherwords "there's nothing wrong so lets put it in a cast to shut you up"). ugg some Drs....

Christina

[wiggles94]

Not sure why the neuro-op said the side effects of disease modifying meds are worse than symptoms.....I was on rebif for a year - side effects were managable with advil - not a big deal - but I went off them when 2nd opinion MS guy said he wasn't that sure I was dealing with MS.  

There are other DMDs as well and I don't think the side effects are that bad - I wouldn't listen to what the neuro-op said re this .  Was she talking about tysabri?  That's a whole different ball game than refib, or copaxane betaseron or avonex.  And when they first begin treating for relapsing remitting MS - docs start with one of these - tysabri may beused when first line drugs don't work.  Just keep all that in the back of your mind as you are navigating - and making decisions.

Hopefully it's not MS -and a good doc will help you figure out WHAT it is - so you know how to treat -  and you won't have to worry about this.  I am just amazed at some of the things docs tell people that aren't true!

Be well - keep us posted.
carol

[lenorekitty]

Well I will keep you updated if she does give me a definative DX. I was just so shocked that she even thought it was probable after so many neuros have shrugged me off saying it's not even neurological let alone MS. I'm still waiting for her office person to get back to me about where to go for my evoked potentials.

What I don't understand is I've had visual evoked potentials before, the speeds were 131 in my left eye and 116 in my right. She said they needed to be above 150 to be slow, but everything I've been reading says they should be under 100 to be normal.

If the Mc Donald criteria doesn't require lesions to be seen on the MRI, why are so may Dr's so reluctant to diagnose when the patient fits the clinical picture, to me it seems that w/ the DMD's out that even if it's thought to be higly likely that they'd want to diagnose to put the patient on DMD's to decrease the speed of progression. Although the only Dr to ever bring up DMD's to me was my neuro-opthalmologist, and she said that even if they had a diagnosis of MS for me that they would not recomend me taking them because the side effects are going to be worse than my symptoms.

Of course that scared me.  I coulodn't imagine side effects being worse. These symptoms have already caused havoc in my life....I was 2 classes and 200 intern hours shy of graduating w/ my masters in acupuncture and was accepted into a school in China where I could get my MD and practice both types of medicine during my internship, and now I am just thrilled when I can manage to get through the day without these symptoms effecting me.

[lenorekitty]

These last MRI's were done on a 1.5T. I had specifically requested this particular MRI lab because they are the only ones in the county with a 3T MRI....my thoughts were I wanted the greatest chance of them finding lesions if there were any to be seen on MR....but alas they used the 1.5T unit.

[sarahw244]

You must have found a really good neuro!  I have been in limboland for awhile now, not as long as others here, but long enough.  I have not heard of anyone being dx'd without the lesions on MRI either, as Ess said.

I, for one, have lesions on my brain.  My neuro thought he would be dx'ing me after additional tests.  He thought he would find additional lesions on my spinal cord, but none were seen.  After this, he said he would give me a dx if either my LP or my EP's came back positive.  Both were fine, so now no dx for me.

I hope that you are able to find out what is wrong with you soon.  I think Ess summed up a lot of what I was going to say, as far as McDonald criteria.  It sounds like this neuro is one of the rare ones who actually follow this on the road to a dx.

Good luck and take care!
Sarah

[essdipity]

Carol has given you a wonderful response. Every limbolander should take it to heart.

So I am addressing only the narrow question of diagnosis without MRI evidence. In theory this is possible. After all, MRI imaging has only been available for what? 30 or 40 years? And before that MS was regularly diagnosed, though perhaps only in the most obvious cases. Limboland was probably a lot bigger then, if not called that.

The McDonald criteria don't call for MRI evidence. Yet neuros rely on it so heavily always. And many neuros won't diagnose even with abnormal MRIs if the lesions aren't 'classic.' Of course these doctors are plain wrong, in my view, but these doctors are still the ones many of us have to deal with. Still, it is generally accepted that 5% of those with real MS do not present MRI evidence. That is 1 in 20. An awful lot of people.

So, in theory, yes, MS can and should be diagnosed in those with clear MRIs but other clinical evidence. Whether this actually happens is doubtful.

I'm asking whether anyone here was in this situation yet has been diagnosed with MS. Please let us know if this fits you. I've been on this forum for almost 4 years now and can't remember a single case.

ess

[wiggles94]

PS

Do you know what strength MRI machine they used?  A 3T machine will show more than a 1.5 machine.  Mine were done on 1.5 and show lesions in brain - but none in spine - I'm still a "gray" area patient - but we're doing follow-up MRI on 3T to get more complete pic. Doc said images are much better not only for seeing more, but seeing shape and size much better.  

That said - I present well clinically - and I don't have the obvious symptoms you do - such as optic neuritis. Just on -going numbness/tingling - fatigue , feeling of being a bit off balance - confusion - all just there - but no one else would know from looking at me.  Had a great talk with my neuro recently, and he said this disease is so confusing because no two patients are the same - yes - there are some classic things that MAY present in SOME patients - but each persons's disease is unique to them.  Makes it very tricky!

[wiggles94]

Hi and so sorry for what you are going through.

MS can often times take a long time to diagnosis.  I'm sorry you had people making you think you were crazy - I can relate - but you know your body - so good for sticking with it.  

And there are many like you  - who get so tired of the docs not figuring it out or discounting what we are going through - that we have to step back for a while - get away from it all.  Take a break.

Read the health pages at the top of the right hand corner and you will learn a lot about MS As far as diagnosing with no lesions and clear spinal tap - look up the McDonald criteria - that's what docs are supposed to use to diagnose MS -    YOu can find it on the health pages.

MS is a progressive disease - BUT even if you don't fit the criteria to be diagnosed - you can still be treated with a disease modifying therapy- to slow the progression of the disease if docs say it's a CIS - probable MS - etc.  So start researching disease modfying drugs so you can talk to your docs about this!

You have an attitude of acceptance for what your body is doing  - and that's so healthy - that's not an easy place to get to.  I think it's very hard to accommodate - and sometimes the harder we fight our body - the worse it can be.  Rest as needed - exercise as you can - keep good social outlets - ask for help as needed  and make sure you communicate well with your docs.  Be your own advocate.

Good luck!
Carol