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Old 11-26-2007, 04:47 PM   #1
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Question Diagnosis: Devics Syndrome(Form of MS or not?)

Six years ago my body went numb and tingling from the chest down. My family doctor sent me to a neurologist. After a MRI (full body) he diagnosed me with probable MS and ordered a 3 day treatment of IV steroids and 8 weeks of predisone. Of course, my mother insisted we get a second opinion. Not much better. He said that since there was only one lesion(which was in my neck) showing in the MRI, he would diagnose Transverse Myelitis. Well, the numbness and tingling lasted 4-5 months.

Over the past 6 years, they have returned, to some degree, in spells, but have not lasted long. I have had numerous MRI's and Spinal taps during this time and have also taken the IV steroid treatments again.

Summer of 2006, I began having pain in my eye and my vision became blurry. I have suffered from migraine headaches for most of my life, as they run in my family, but they became worse and more frequent. My neurologist ordered another MRI and an EEG. The results of the EEG showed Optic Neuritis in my left eye. He told me that combined with the Transverse Myelitis what I had was Devics Syndrome. He said that there is some debate as to whether or not Devics is a form of MS. He doesn't think that it is but everything that I read about it seams to say that it is. I really don't know what to believe anymore. The numbness in my hands and feet are coming more frequently and I have been having jerking spells when I lay down at night. He doesn't think that it is related to the Devics but to the Migraines instead. Should I look for another neurologist?

 
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Old 11-26-2007, 05:15 PM   #2
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

Hi. Thats a tough one. I have read up on Devics, and also asked my doctor about it. I have had optical nueritis many times which is what led me to the research. My doc doesnt seem to think that Devics is a form of MS either...although there is no doubt the two are closely related! Your symtoms are so MS, its surprising that they are leaning towards Devics to begin with...something MUST be different in the two diseases which Im missing.

You asked about a new Neurologist. Truthfully, not that many Neuros are well versed in Devics that I can find; however it seems yours is. Thats a plus for him. But on the same page, why not get a second opinion? If you do so, I would pre-screen before making an appt, trying to find a doc who is familiar with Devics and MS so that you can truly get a good second opinion. No sense going to a doctor who isnt familiar with both diseases. If all else fails, make an appt with an MS Specialist, at least then you are guaranteed that they know their stuff, and will refer you to someone else, if they dont feel it is MS. Thats always an option.

Migranes are a whole different species of pain. Some people with MS do get migranes, I feel fortunate that I do not. However, Optical Neuritis does cause me horrible headaches, so there is a relationship there, too. Youre really getting hit from all sides, arent you? My sympathies to you.
Please, talk to your doctor more. Find out why he thinks Devics and why not MS- find out if HE thinks you should see an MS specialist to rule out MS. I somehow think you are either experiencing both, or you have MS to begin with...but without truly understanding Devics completely, I cant begin to say why it would be Devics and NOT MS. And if you really feel you want another opinion, by all means, go get one! Its your body, and you have every right to both answers and complete care.
Good luck and please let us know how youre doing....I hope you feel better soon.
Nikki
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Old 11-26-2007, 05:22 PM   #3
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

This is a reliable website and explains Devics

[url]http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm[/url]

There is a blood test for Devics and I would suggest getting it. I have heard Devics referred to as a MS variant but it's now believed to be a separate disease.
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Last edited by moderator2; 11-26-2007 at 06:18 PM.

 
Old 11-27-2007, 09:27 PM   #4
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

Thanks for your responses to my questions. I actually just stumbled upon this site and thought I would give it a try. It is great to finally be able to connect with someone who understands what I am going through, atleast somewhat. I have tried talking to my family and friends, but how can they truly understand unless they have gone through it themselves? I have so many other symptoms that I didn't have time to get into all of it before. But I do plan to look into finding another neurologist or a MS specialist soon. I have a 12 year old son and I have to everything I can to stay as healthy as possible for him. Please keep me in your prayers. And forgive me for rambling on.

 
Old 11-28-2007, 05:01 AM   #5
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

Hi~ This, I had seen before and thought I'd share....

It is considered a special form of multiple sclerosis (MS) with a severe and rapid course. There must be a bit of controversy about this. Good luck on your journey of getting answers!!

Cindy

 
Old 11-28-2007, 07:43 AM   #6
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

Hi Rissa.... many prayers to you in your journey. I read some about Devic's Disease this morning. I had not heard of it. It sounds like it behaves much like MS except some of the symptoms are much more severe. They seem to treat it with lots of steriods.

I read they have different meds to use for some of the symptoms. There is a plasma exchange that seems to help for a good percentage of people diagnosed.

It appears it will be a battle to get a diagnosis much like many who struggle to get an MS diagnosis. It sounds, based on your description of symptoms that what you are experiencing could be EITHER.

I agree you need to go and talk to another neuro! Take all of your films and medical reports with you and get another opininon.

We are here to help with what we can and you can ramble here anytime!

Lisa

 
Old 11-28-2007, 08:22 AM   #7
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

The main difference in Devics vs MS - There is a blood test to confirm or rule out Devics whereas there is not any single test for MS to rule it in or out.

Devics is genetic and the reason there is a blood test for it.
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Old 11-28-2007, 12:25 PM   #8
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

RISSA, to your original question about looking for another neurologist, I'd suggest yes. You got some good info. about Devics here and I will add that another characteristic is that lesions appear in the spine instead of the brain -- I'm not 100% sure that they never occur in the brain but the spine is certainly the focus of the attacks.

I agree that there is some confusion about it being an MS deviant but I think it's just because MS is the closest thing that mimics the sx -- they ARE different. As Snoopy says, you should get the blood test -- and it does seem a little strange that your doctor would have dxed you with Devics without doing that. Sounds like he might be rendering this dx on the basis of the spinal lesion and optic neuritis -- that wouldn't sit well in my book without doing the blood test!

If you do go on to another neurologist, you might want to think about going to an MS specialist. There are enough similarities so that this kind of perspective might be helpful.

Also, there is someone on this board who has Devic's. She hasn't posted for a long time but you might want to do an advanced search on the MS board for posts containing the word "Devic's". Some of Julie's posts might be helpful to you.

Good luck and please keep us posted!

 
Old 11-28-2007, 03:00 PM   #9
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Unhappy Re: Diagnosis: Devics Syndrome(Form of MS or not?)

Thanks for all the advice. I will take it all into consideration. I did not know that there was a blood test for Devics. My doctor is retired and only sees patients 3 days a week now from 9 til 12. He hasn't given me any new meds for the Devics. He has instead increased the dosage of my Topamax 4 times in the last year and a half. I started at 50mg a day, now I am up to 200mg, the max. I take that to prevent the migraines. I take Amitriptyline for the tingling in my hands and feet, but it doesn't really help. It does help me sleep though, so I keep taking it for that reason. I take Baclofen for bladder spasms, but still have that problem too. I have been on the same Meds for 5 years. No change except the dosage.

Last December, I started shaking uncontrollably, all over (hands were especially bad). He told me that it was because I was not getting enough sleep. I was getting the same amount of sleep I have been getting for the past 10 years. He prescribed Ambien, but I could not afford to get it filled. After about 6 weeks, the shaking stopped. No change in my sleep pattern. I still don't get much more sleep than I was then and I still have the shakiness occassionally. He hasn't ordered any other MRI's since summer of '06. How do I know that there isn't something else going on?

When I was first diagnosed with TM, my doctor(not the same one) ordered 3 days of Solu-Medrol and 8 wks of Predisone. Solu-Medrol I will do again, Predisone was horrible. I had to start taking xanex while I was on that stuff and the reflux was really bad. I have been on Prilasec/Nexium since taking that. Not a problem before. I also gained 40 lbs in the 8wks. Hard to get that off!!!!!!

I try to keep a possitive outlook but sometimes it is just so hard!

 
Old 11-28-2007, 03:29 PM   #10
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

RISSA, yes, it is hard, whether it's having these types of neurological disorders and especially when you have more questions than answers. It's good you reached out for support -- you are certainly not alone.

Especially with what you just posted about your doc being retired, I would really encourage you to seek a new doctor. There is so much research being done and new things are being discovered with great rapidity -- no cure yet but more information on potential origins, drugs and diagnositic tools. Personally, I would want a doctor who is active and stays on top of these things. Not that your doctor doesn't but I hope you know what I mean -- and yes, rendering a Devic's dx possibly based on the absence of visible brain lesions would make me at least want to get a second opinion. And as you inferred, I agree you're due for another MRI!

Last edited by Bearygood; 11-28-2007 at 03:30 PM.

 
Old 11-29-2007, 09:12 PM   #11
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

All of your advice has been really helpful. Now try this one. I live in a small town. Does anyone know of any good MS specialists or how I can find one practicing in the Upstate of SC or nearby? I know I will have to drive atleast an hour to get to one.

I am going to call my doctor tomorrow and ask about having another MRI. I doubt I will be able to see him tomorrow, but I can atleast make an appt. to talk to him and give him one more chance. I do want to ask about the blood test for Devics. I will keep trying to find out what is going on!

It's nice to know that I am not alone and have somewhere to turn when I need to vent, finally.

 
Old 11-30-2007, 05:25 AM   #12
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Re: Diagnosis: Devics Syndrome(Form of MS or not?)

Rissa, you are never alone! Call the MS society in SC and they will give you some referrals for MS Docs in your area, but in the meantime, others might chime in with docs they use as well..
It takes a while to get an appt, so start looking!
IF there are any University Hosptials in your area, or in driving distance, you might want to research their Nuerological Departments as well; sometimes they have MS clinics..
Good Luck.
Nikki
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