Dx with MS but MRI's are constantly neg.

[cz1970]

Hi Dr,

Thank you for reading this. I am a RN and have had ON 3 times in 4 yrs. Approx 2-3 weeks after developing ON I develop  right sided symptoms such as ataxia, parasthesia in BLE, Llermettes phenomenon, spasticity, and  I could keep going. My MRI's are always negative and my LP was neg. The low contrast visual exam shows severe damage to my R eye (the eye I keep getting ON in). I was started on Copaxone 2 yrs ago.  Oh yes, my very first neuro symptom was Brachial Neuritis in 2003 where my R arm became paralyzed for about 3 months. This was confirmed my MRI and neuro surgeon.

They have tested me for NMO, Lymes, Lupus, HIV, Syphilus, RA etc. Is it possible to have MS with repeatedly neg MRI's? MS specialist said they have ruled just about everything out they can think of so it must be MS.

Thank you for any feed back. I want to be proactive in my health as I am a very active person and want to ensure I am treating the right disease.

Cz1970

[coach291]

I am alot like you. My MRI and LP can back normal. My Evoked Potentials came back positive. I got diagnosed with my EVP test and my symptoms. Numbness, weakness, extreme fatigue, parasthesia, ect,ect. Started off on copaxone...didn't work. Now on Betaseron. I believe it is working somewhat but the last few weeks have kicked my butt with the heat. (I live on Saint Simons Island off the GA coast and it has been brutal the last few weeks).

[echo74]

I just had the RNFL done 3 weeks ago. The DR I saw said that he saw paller of the left optic nerve and gave ref to Opt Nero, which is the eye that I went blind in 2 months ago. The blindness began after I had worked in the sun 105 degrees for about two weeks, Monday evening I lost my sight, woke up, sight was back, Tuesday again but earlier in the day and then wed,by 1:00 pm I had to lay down I was exausted and couldn't see, Thursday I went to my local OPT, and she saw nothing, gave ref to Opt Nero( he doesn't take my insurence) Went to hospital for MRI on Friday, friday night had what I was calling a seizer now I know it was some kind of disconesia, got called an  "F"ing psyc by the ER doc, left was home all weekend and was told to file for Emergency Medical Insurence, Went to do that had multipul attacks of the disconesia, was admited to a differnt hospital, stayed for 5 day, Had 3 MRI (all Neg) had LP (Neg) and then saw the OPT while in the hospital that said I had the Paller on the left Opt nerve, Then sat I was told I was crazy and they would like to send me to the nut house across the street, I discharged myself, went home once again blind, in a wheel chair due to exaustion, and muscle spasms, amongst a tone of other symptoms. But all of the Dr I have seen say that I am crazy???This is my second relaps I had some of my symptoms last year.But all of this is self diagnosis for now, what to do next??

[cz1970]

Oh.. I think I had that. Its like a picture of  your optic nerve that looks for thinning? Dr said its normal. They said my ON is behind the disk so they cant see it. Its retrobulbar neuritis. They said they know its there because the contrast test shows it....

[jensequitur]

Hey, RNFL is the retinal nerve fiber layer.  I assumed since you'd had the low visual field acuity test that you'd also had the optical coherence tomography test.  I'll bump up my post on that so you can take a look.  Basically the RNFL shows atrophy because there's no myelin to shield the nerve.  So your neurologist can get a good idea of what's going on just by looking at a scan of the RNFL.

[cz1970]

Thank you guys and hi Slowe yes long time no see. Yes I've had my ANA tested which was neg of course. What is RNFL? I haven't been back here for a few  years because I was 100% convinced that I didn't REALLY have MS. I had a pretty bad flare in June per the MS specialist.... I had to do 5 days of steroids vs 3. This one was bad enough I had to tell my boss which I've managed to keep a secret for 3 yrs. So... needless to say it's forcing me to admit I probably do have MS. I see the MS dr again the 25th. She is wonderful too so I should just settle into the dx and move on. Its hard though as you all understand. Somedays I feel so brave that I think I could just tell people. Then I shrink like a scared dog under the table and dont say a word. UUUGGGH!  I finally had the NMSS send me a bunch of stuff so that was a first step for me. 3 yrs..... first step lol in admitting it. oh well....

[jensequitur]

Hey, I think you got lucky in the diagnosis!  Your symptoms all point to MS, and the RNFL thinning indicates you have atrophy of the CNS without lesion formation.

They're saying now that there's several different types of MS, some with lesions, some without, and some with only a few.  You might be in the no-lesion category.  I have only a few lesions, but I have atrophy of my RNFL - pretty severe in some areas.

[sllowe]

Hey Girl,

Long time, no see! Where did you want to post this? Here with us?

I understand why you'd question your dx :( I would too - but do feel the dr did you right by starting you on meds a cpl years back.

Nice to see you :)
-Shell

[COBOB]

Since you have been tested for NMO, Lymes, Lupus, HIV, Syphilus, RA etc., I'd guess that you have a negative ANA.  The big reason for the MS diagnosis and early start on DMDs may be related to recurrent ON in the same eye with a negative NMO  antobody.  This condition (recurrent ON,  negative NMO antibody)  would correlate highly with the development of clinically definite MS within 5 - 10 years (see the final report from the Optical Neuritis Treatment Trial.)  

Bob

[9139041]

You are proactive. There is possibility everywhere: one has to find out a way out.
Please do a blood test for ANA, if not done before.
Where are you from?

[9139041]

Where are you from? Please do ANA.

[supermum_ms]

Hi and welcome to our little corner of the web, i'm sorry but we do not have a dr to answer any inquiry. The forum is made up of people dx with MS, probable MS, dx mimic's and of course MS limbo landers. Its a wonderful group of people from all over the world, living with sx of MS, very supportive and friendly, ready to listen or just have a laugh with you, welcome!

If you haven't already, please take the time to read our health pages, top right of your screen the yellow icon, there you will find many articles you might find of interest to you. The one i think you'll most like to read is........

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

There is a chat coming up that you could join, it will be a discussion with Dr Johathan Howard and members and the topic is anything regarding MS, it should be quite informative and if you do choose to participate your question may get answered directly. see below:

Upcoming FREE HEALTH CHAT: Multiple Sclerosis: Understanding the Disease and Managing Symptoms Tuesday Aug 16, 2011, 06:00PM - 07:00PM (EST) - Dr. Jonathan Howard

Register now and ask your question:  http://www.medhelp.org/health_chats/show/65

From my layman understanding, MS is a clinical dx. a dx of exclusion and its your body that is telling the full story, the MRI is a tool like any other tool and it is suppose to be used to support not exclude. The good Neurologist, the confident neurologist will on occasion dx MS with clinical sx, mimics eliminated and the history of their patient even if the MRI doesn't as yet support the dx, it doesn't happen very often anymore but it does still happen.

Unfortunately MS is a difficult dx to make, and many people wait years before their MRI provides enough evidence for their neurologist to finally dx them and put them on DMD's. Others sometimes get a dx of benign MS and can't get the DMD's because their MRI isn't providing enough evidence for their neurologist, they basically are left to treat sx and not the disease until they have a significant relapse. Then you have CIS, which is when there is one documented relapse and the patient doesnt meet the criteria of space and time, MRI evidence isn't yet enough, the recommedation is DMD's but most dont get them until after they have fully met the critera.

If you have a pro-active neurologist who's confident in the dx of MS to explain your situation, treating you respectfully and your comfortable with him/her, your sx are being treated and your on DMD's, then you are better off than many. You may find that to persew a second opinion will put you backwards in your treatment, its not unusual for a dx MSer to change neurologist and suddenly find them selves without a dx and back in limbo land and waiting until their new neurologist is 100% sure.

It may still be a waiting game, if an alternative dx does eventually turn up then you'll know it was a misdx but I suspect you will always be unsure until your MRI has caught up with your body, a little bit of denial maybe which is understandable. If you trust your medical team, then trust them, if you dont then find one you do!

Again welcome to our wonderful community :-)

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