Has anybody out there been diagnosed with devics disease without having optic neuritis?
I have had "myelitis" for 3 months with varying degrees of symptoms: poor balance, poor walking, buckling legs, extreme fatigue, tingling hands and feet. Overall muscle weakness, poor dexterity, hot and cold patches over body.
My neuro has written to my gp saying that they are thinking along the lines of devics or tumor. I have a large patch of inflammation in my neck and a small one ( which the neuro was not worried about?!) in my brain.
Having read about devics, it seems that most people present with optic neuritis and then go on to have myelitis. My eyes have been fine (thank god).
I have had 3 days of intravenous steroids about 5 weeks ago. No massive improvement in symptoms. I am now on 60mg of amatryptiline for my tingles.
Devics disease sounds pretty awful and doesnt seem to respond to drugs in the same way that ms does.
Just looking for advice really from anybody who has been down the same road as me. Feeling a bit freaked out to be honest.
Hi BizzyLee! I was in the same boat as you are. I went for a 2nd opinion (after receiving no diagnosis from my first neuro) and the neuro told me he thought I had Devic's disease. Now sitting in the office hearing that sounded alot better than hearing I had MS. That was until I went home and did my research. Devic's has a very grim prognosis as I am sure you have read. Why my neuro thought I had Devic's rather than MS, I am not sure. The symptoms seem to present themselves in the same way but usually affect both sides of the body in Devic's... Optic neuritis being a big one. However, the distinguishing fact between the two is usually an MRI. The lesions in Devic's are elongated and extend about 3 vertebrae in the spine. And also lesions are primarily located in the spine with no activity in the brain. Have you had a spinal tap yet? Oligoclonal bands in the spinal fluid is the key to diagnosing MS, whereas someone with Devic's typically doesn't have these bands. Also protein levels in the spinal fluid should be higher if you have Devic's than if you have MS.
I ended up being diagnosed with SPMS, not Devic's when all the tests came back. There is a blood test done out of the Mayo Clinic that can test for Devic's... but I do hear it's not all that accurate. You can test false and actually have the disease, but it would be worth getting it sent there I'm sure. Good luck to you! Also Devic's is such a rare disease that I told myself to go play the lottery! It could just be a mix up, until all the test results are in no one will know for sure.
thanks for your speedy reply. I have not had spinal tap done yet. Am referred to neuro surgeon to rule out tumor on monday (don't like the sound of that!). My first mri showed inflammation of the spinal cord in the neck. Then i was given 3 days of steroids. 3 weeks later the next mri showed the inflammation to be longer and wider (actually bulging my spinal cord). That is presumably why the neuro has suspected devics. Maybe i should push for spinal. God, this is turning into a nightmare!!!
The unknown is a scary thing! So I would push to find answers, including the spinal tap. My neuro was able to rule out tumor or "a growth" as he put it by the spinal tap as well. They can tell alot from that fluid!
Now when you talk about the lesions in the area of your neck, bulging... do you mean the way they look on the MRI or literally bulging at your neck? You are right that Devic's lesions present differently, elongated rather than rounded like in MS. Have your symptoms been bilateral- happening on both sides of your body? What types of symptoms have you had?
I wish you the best of luck in your struggle to find answers! I was there 7 months back and I remember how scary it was. Even when I was unsure of my diagnosis, this board was always a good place to turn to! So continue to post here regardless
My mri shows the inflammation bulging. You can see a distinct difference between the 1st scan i had and the 3rd one. The inflammation is longer and wider (hence the bulging).
My symptoms started with tingling in my hands/arms (both) and then went on to: lack of dexterity, weak legs, buckling legs, tingling feet, fatique (unbelievable exhaustion!), tinnitis, Hot right shin, freezing back of legs (like cold water), hot back, stiffness in arms, foggy brain.
I would say that although the symptoms do seem to be on both sides of my body, they do seem to favour the right side. I do find that it is a bit of a lottery every morning to see what symptoms i am going to have. There seems to be a lot of ying and yang going on. If my arms are bad, my legs seem better and vice versa.
Adds to the excitement i guess!
Based on this additional info...What do you reckon. Time to get really worried or not?!
Well I can't tell you to get worried, because that is not good for anything! So try and stay positive I found this slide show/ speech done by a neurologist at the Mayo Clinic who is very big in the study of Devic's. When my neuro mentioned Devic's I was about to get on a plane and visit the neurologist, Wingerchuck. These slides are alittle blurry but his speech is very informative.
Has your neuro mentioned Transeverse Myeltits? This speech is alot about comparing Devic's to MS and Transverse Myelitis as they are all very similar.
Last edited by moderator2; 05-10-2006 at 09:26 AM.
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Well, I was confused before...Now god only knows how i feel. Saw neuro surgeon yesterday. He was running an hour late. He went through a brief history of symptoms with me, hit my reflexes with a hammer and and a quick look at my scans. Then he decided that because i have a slight disk bulge in my spine near the inflammation, that was what was causing the problems. My neurologist and his team and another team of radiographers have discounted it as the cause on 3 seperate occassions as they don't feel it is significant enough and reckoned it was coincidental.
The surgeon then proceeded to tell me that he can make a 4" cut in the front of my neck and widen my spinal cord to ease some pressure but all the symptoms i have will be permanent. However if i dont have it done my symptoms could get worse. He doesn't know for sure if it is the right thing to do and only time will tell. If i have another relapse then it was probably the wrong thing. WHAT!!!!!!
To say my husband and i are confused is an understatement. I have rung my neuro to get some answers. All that we were told yesterday completely contradicts the last 3 1/2 months. HELP!!!
He was pretty certain it was not a tumor but wanted his colleages to look at the scans to see what they think. I really have not been filled with any confidence at all. Really don't know what to think. I have gone from myelitis to ms or devics or tumor and now it could be disk bulge! Has anybody else been down this road? What on earth do i do now?!! I haven't had a lumbar puncture yet...maybe i should push for one. I certainly don't want to go under the knife if it is not the right thing to do...
I would certaintly push for an LP before I went into an uncertain surgery. The LP can test for devics, MS, and a tumor. So in my opinion, get that done, rule them in or out, and then talk about surgery if thats still on the table. Good luck to you. You seem to be surrounded by a group of conflicting doctors... that's not good.
Wow am I glad that I found this site.
I was DX with MS 2 years ago after 3 bouts of optic neuritis MRI's which showed leisions and EP test. Well after starting rebif which is an interferon beta that is supposed to lessen your flairs I was still getting ON every 3 months. My neuro sent me to Cleavland Clinic to meet with a DR at the MD clinic there. That is the first time I heard of Devic's. I had the blood test done adn it was sent to the MAyo clinic. I was so excited on the way home thinking whoo hoo I might not had MS. Then I read abuot devics and prayed that it was MS. Life is funny huh? So my results came back and I do not have devics but just thought id post that little story.
I have had a good long think since seeing surgeon. Pretty certain that his theory is wrong because i dont have ANY pain at all. All my symptoms have been sensory or motor. I have lower back degenerative disk disease which can cause me agony when it flares up which is why i think his diagnosis is wrong. All the research i have done on bulging disks have shown that patients present with pain. As i said i have no pain at all! Somebody give me a diagnosis (although not devics please).
Today i feel the best i have felt in months. Still not normal but i think the amatriptilyne is finally working. Also my walking is better. (maybe the thought of going under the knife has scared my body into getting better!!!)Who knows?
Had call from neuro surgeon today. He is now sitting on the fence as to what the inflammation is and admitted that neither he nor his team know what they are dealing with. He thinks it is unlikely to be a tumor but wants me to have all the scans done to make sure. I am having a mammogram tomorow and mri and ct next week. Hopefully all my blood results will be back by then and we can start ruling things out. He then has to decide whether an operation will stop things getting worse because at the mo he is unsure. Saw a physio yesterday who did not feel confident in dealing with me as my symptoms are out of his remit. He gave me a walking stick to help me walk better and said i need to see a neuro physiotherapist?! And to cap it all today my lower back is killing me (degenerative disk disease in lumber region)and my right calf feels like it is in a blast furnace! When will this nightmare end? When will someone diagnose me?!!! Sorry...Just feeling sorry for myself!