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618788 tn?1278339457

heard of devic`s syndrome?

i am 39 female who has had on going pain everywhere,numbness in legs and hands, speech slurry, hip an lower back pain everyday, fatigue, over heating, always tired. had 4 mri`s, all negative. 2 lumbar punctures, one had small inflamation in it and after 13yrs of being like this, now have inflamation on lower spine L3 an L2. i`m only on pain killers as attacks r too unpredictable to be on right meds. i`m so frustrated that they can`t give me the right meds as my attacks go worse then get better. doc`s r so slow in australia, they don`t believe me when i hurt as it`s on the inside, not the outside 4 them to see. does ms act like this? i`m not sure that the doc`s know what they r doing but i still have to live like this everyday. not them. plse read up on devic`s syndrome and plse give me your opinion. i would love to know what i have. luv tania
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618788 tn?1278339457
Hi Udkas, thanku for writing to me, i appreciate any feed back from any one out there. i`m sorry but in my first letter, i forgot to write that i have had optic neuitis in my right eye about a yr after the first attack ( which was no feeling or strength from the waist down). i lost sight in my right eye and it was the most scary thing ever. the doc`s gave me 6 days of intravenious perdnisolone in my hand. my sight slowly came back after being on prednisolone for 3 mths. i have lost some spots in my sight that i will never get back but i`m ok with that as i can see and somedays i can walk properly(not long distances though) oh well. life could be worse. i`ll still be kicking at 70. lol. luv tania
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Avatar universal
Hi welcome to this MS Forum,

It's a great community that can offer lots of advice etc.

This forum is not monitored by Doctors, although sometimes doctors do look in, so members can offer you their opinions but please do see your neurologist. Quix is a retired pediatrician and she offers a lot of support and information to people on here.

Devics disease as JJFL has stated usually effects your optic nerves and your spinal cord.  It is also called NMO.  The test can be done in Australia, I think it is sent to Melbourne and in the States to the Mayo Clinic.  I live in Australia too and I think we have some wonderful doctors, I guess it depends on who you see.  If you are unhappy with your doctor perhaps you should get a second opinion, shop around and find another doctor.

I think only a doctor could make an opinion as to if you had Devic's disease, if you are concerned about this you should ask your doctor so he/she can either do some testing to rule it in or explain to you as to why they don't think this would be the case etc.  

Devic's disease is normally fairly progressive from what I have read but sometimes there can be a milder course and it can remit for a while.

Have you had optic neuritis?  If you have had ON and have lesions on your spine but clear brain MRI then perhaps Devics might be an option, but from what I have read and I AM NOT A DOCTOR, i don't think it sounds like Devics but do ask your Dr.

I think you need to find a doctor that you like and trust.  Has a doctor given you any ideas as to what they think is causing your symptoms?

Best of luck, I hope you get some answers and find a good doctor who can help you.

Cheers,
Udkas.
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719912 tn?1234390765
Hi Shorty1969,

It is Nice to meet you...Sorry it is because we have an illness. The following is in response to MOJO39. If you look down the page of topics you can see the thread  Neuro Myelitits Optica.

NMO is a disease of the eyes and spinal cord, currently thought to spare the brain in damage from the disease.  It usually is associated with optic neuritis in both eyes ((but can be in one)) and severe symptoms from spinal cord damage.  The hallmark imaging with NMO is a lesion extending over 3 or more vertebral segments. A Spinal Tap is usually negative for banding.

Mayo came out with a blood test that they say is 70% accurate in diagnosing this disease but I have heard doctors say it is a little less than that.  So what that means is, if you get this test and it comes back Neg. You still could have NMO.  Nothing is ever simple with these D#mn neurological conditions.   The blood test is called NMO-IgG only done at Mayo.

I have been tested twice and neg. both times which is Ok with me.  Keep fighting you will get answers it can be VERY frustrating...believe me I know. LOL..

JJFL..........

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