Differential DX for Demyelinating Disease

[COBOB]

I am a 48 year old male. I had a diagnosed episode of Optic Neuritis back in the April time frame.  I was also experiencing  burning dysesthesias in my forearms, hands and feet bilaterally,  I was treated with 1 GM Prednisolone IV x 3 days.  B-12, Lyme Titers, STS, CMV, Cryoglobulin, HIV were all Neg/Normal.  A 1.5 Tesla MRI of brian and neck showed one  T2 PSE lesion of the brain w/o contrast. No GAD enhancing lesions. VEP showed decreased amplitude and CV for my right eye.  LP was negative for OCBs, and slightly elevated protein. . About a month ago I was struck with right sided maxillary facial pain that the Neurologist diagnosed as Trigeminal Neuralgia.  I was stated on Tegretol.100 mg BID.  I'm up to 200 mg BID and it is providing some relief.  I can understand that I fall outside the typical criteria for MS, but what else should be considered?  I seem to be having different episodes of demyelination and in different locations (CN2, CN5, brain?)  Like most patients, I would like to know what is going on, but more importantly, I'd like to stop or limit the damage.  I should be going in for a second head and neck MRI in a month or so on a 3 Tesla unit. Any suggestions?

[sllowe]

Hi Bob,

Hmmmm. Ok, well bring on November, huh? I'm sure you are anxious to see the rest of the story. I hope the new imaging brings to light the culprit.

Do keep us posted.

-Shell

[Deb61]

Best of luck with the 3T and double dose GAD.  I hope they wait the recommended abount of time after the GAD is placed in your veins.  They never wait for me, and I think it's a total waist of time and money to go that quickly.  I never say anything because I'm already diagnosed, but for you it makes a big difference.  

Maybe someone knows the recommended amount of time for waitin when the IV GAD is introduced . . .

[Guitar_grrrl]

Hey, Bob,

I have a brother in Morrison, and a sister in Fort Collins!  I love visiting all my family there!

I also have very few lesions on a 3T, no GD enhancement, no O bands, all mimics ruled out, and my neuro still diagnosed me with MS.  My neuro exam is pretty "in your face", though.  My history goes back some 20 years.

I had a SSEP 2 weeks ago, I have yet to see the results.

Good luck!  

[COBOB]

They have not ruled out MS.  They said it wasn't likely (<10%) since there were no OCBs and only one lesion on the 1.5 Tesla MRI.  They are waiting to see what the November MRI shows.  That MRI will be a 3 Tesla with double dose GAD.  Since I have a diagnosis on TN and ON, they say it is a "demyelinating disease,"  but I think they are trying to avoid saying much more until the next set of MRIs.  One lesion and a positive VEP doesn't rise to the level of diagnostic criteria.  Two lesions with a positive VEP is a different issue.

Bob

[sllowe]

Hi there,

Add-on welcome to you.

If it were MS, your results don't sound so atypical to me. But, I'm no Dr.
Do you know what was ruled out by way of exam and tests? And, when is your next appt.

I encourage you to read this article and interp from Doc Q on Optic Neuritis and MS Risk:
http://www.medhelp.org/posts/Multiple-Sclerosis/MULTIPLE-SCLEROSIS-RISK-AFTER-OPTIC-NEURITIS/show/664930

See you around!

-Shell

[LATW]

Oops.....sorry.  Missed the LP with the first read I did.  sorry...............

[LATW]

I had ON and TN also.  Not "enough" or "typical" lesions on my MRI though.

I went to 4 different neuros and non of them did an LP.  The 5th one did and I now have a firm diagnosis of MS.  

An LP might keep you from waiting and wondering.

LA

[MonkeyMom4]

Glad to hear you have some competent docs around there. Maybe I should head out west. ;-)

Yes, I think I'd rather have another kidney stone as well. I've only had one of those and that pain was minimal compared to TN.

Keep us updated on how your next MRI goes. Hope you get the answers you're looking for!

Have you lived in Colorado long? I'm in Nebraska and looking forward to the big game this Thanksgiving!

Take care.

[COBOB]

I kind of lucked out on the Dr.  I'm being followed at the Univ of Colorado Health Science Center Neurology Clinic which is also part of the Rocky Mountain MS Center.  My old neuro sent me for an MRI that was done on a 1.5 Tesla machine with single dose GAD.  The Drs. at CU said that the current standard is double dose GAD on a 3.0 Tesla.  So at least I have faith in the DRs.

Sorry to hear about your TN.  I'd rather have kidney stones than TN...at least kidney stones pass!

Good luck to you too!

[RedFlame]

Here is an article in our health pages that might help.

Red

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

[MonkeyMom4]

Sorry to hear you're going through all of this. I too am undiagnosed with anything, except the trigeminal neuralgia. What an absolute unbearable pain that is.

It's a long process to a dx for most of us I believe. Just be sure you find a neuro who listens and won't give up on you!

Best of luck to you.

[johnniebear]

Welcome to our forum,  I'm sure more informed members will chime in.


It's never easy to deal with DX, and each DX is unique for each of us and  the same for the SX to.

I would recommend you look around,  and at the bottom right is health pages with detail information.

John.