I have been diagnosed! alittle relief and alittle fear all mixed into one! I had gone to the neuro opthamologist yesterday. She said it was optic neuritis and ordered an MRI just to be positive. I went ahead and sched. an appt. with my brothers neurologist and they got me in right away. I saw him today and he diagnosed me with Devic's Syndome/ MS. I start a 5 day infusion of solumedrol (sp?) tomorrow... then go on prednisone for 7 days... and then start beta seron. I also have a lp on wed. Any advice? Any suggestions? I can still remember when my brother had his... whatever it was it wasnt good cause the picture of him lying in bed has stuck in my mind. What are the after effects like? Im overwhelmed with all the information and all that will be going on in the next few weeks. Im kind of in a state of shock. I have been on this board for months knowing that I had MS... I just knew it. But hearing it is very different. Also the neuro told me I couldnt work for the rest of the summer. He wants me to take it very easy because of how fast my symptoms have progressed in recent weeks. I only waitressed on the weekends... so I guess I cant collect TDI? i dont know... but im sure ill get through it. anyways... any advice would be much appreciated... I want to know all there is to know and would love to hear it from people who are living it. Thank you again
I'm sorry that it was positive. I too am waiting for a diagnosis, August 4, I go. What did the MRI show if I may ask? Again, mine said small white matter changes with demyelination. I had an episode of optic neuritis 8 years ago. Not since but have most of the symptoms. How come they were able to diagnose you without the LP? From what I understand from everyone else here the LP is not as bad as it used to be. I'm sure though that someone who has gone through it will ease your anxiety. I wish I could. I'm sorry that your dealing with this but it must be a blessing to be out of this "limbo" now. You are in my prayers.
Curious... I am wondering about your MRI too. I am very familiar with Devic's. You stated in a previous post your MRI's were clear and this would absolutely NOT be the case with Devic's. Also MS and Devic's are not the same disease. Devic's is a variant of MS. This is what they thought I had. Devic's usually will give you ON in BOTH eyes which is what I have and Transverse Myelitis...again what I have. But my MRI didnt show it.
Curious... I just read through all of your posts. In all of them you said your MRI's were clear. I know it feels good to have a diagnosis but if you have clear MRI's you absolutely CANNOT have Devic's. Devic's - also known as Neuromyelitis Optica or Optica Neuromyelitis ( I get it mixed up ) shows a VERY distinct and VERY large lesion in your spine. I had the same MRI's you did... and I had ON in BOTH eyes and what was very obviously Transverse Myelitis with Partial Paralysis in both legs I have had TWO occurrences of this. I know it very well because it was always followed with the heightened sensitivity to touch. The slightest touch even in my sleep would wake me up screaming. But I didnt have the lesion that extends 2 segments. I mean you CANT miss it. There is also an obvious swelling of the spinal cord. This is the ONLY way to diagnose Devic's. That is unless you have had another MRI since the 2nd week of July. Like I said..they really thought this is what I had because the symptoms were so obvious. I also had the bladder problems too. Devic's will have a clear brain MRI because it only effects the eyes and spine. Feel free to ask me about it. Like I said this is something I am very familiar with. If you can be diagnosed with it without the long signal change on the MRI then I would be. I had the classic symptoms ON in my left eye that left me almost blind in that eye, followed within 2 weeks of Transverse Myelitis which literally came on and left me unable to walk within a few days then ON within a week of that in my right eye. I have gone through this 3 times now with different severities. Once it only hit my left side this was the 2nd bout, this last time my legs and not my arms were only effected. But the first time hit me in both my legs and both my arms. This is all since OCTOBER...all three times were either started with a bout of ON in either both eyes or just one. If the MRI can be clear with this, then I need to see a specialist because it is treated differently. It also hits more often which is why again they thought i had it. 3 relapses in 9 months is alot for MS. Please let me know, I really need to know this. They are now treating me with IVIG which really doesnt appear to be helping.
Well its nice to hear from someone who knows about this disease. Basically... I had gone for MRIs of the spine and brain... all came up clear. My nuero just wanted to wait it out and see what happened... didnt even do blood work. I therefore went to a second opinion after the numbness in my legs started and the ON in my left eye 3 weeks ago. So like I said, I met with my brothers neuro yesterday. The impression I get is that it could be Devic's... it could be MS... and he also wants blood work done to rule out Lyme etc. But he ordered the steroids STAT because I had no time to waste. I severly declined in the past 3 weeks, after 6 months of just muscle weakness in my left leg. So the feeling im getting is that he threw MS and Devics out there because I have the symptoms that go along with both. You are right... they are different disease... Devics affects the spinal cord and optic nerves whereas MS can hit anywhere. But either way steroid treatment is good for both. He wants to get my symptoms under control and then worry about naming the disease. However... I did alittle reasearch and if you could clarify you would save me another sleepless night! My neuro seems to think that the lesions would have been too small to detect over a month ago when I had the MRIs. I did only have muscle weakness after walking for alittle while. My symptoms have progressed and therefore maybe lesions have to... I dont know. But in any case... I am having blood work done soon and the LP on wednesday. This should get a definite answer. I also read that lesions dont show up on the spine with Devic's, you just see a white or gray area around the spinal cord where it is inflammed. It would be about 3 vertebrae long. And something else id like to throw out there... cause im sure your neuro went over this disease with you... I read on a few website articles that Devic's leads to death in 1/2 the patients within several months. This is due to breathing being affected. So of course I spent all last night/ this morning thinking I couldnt breathe... anxiety attack. Nurse came this morning to start the solumedrol and all my vitals were normal. Also... there is a blood test for Devic's apparently developed by the Mayo Clinic. Have you heard about this/ had it done? If results lead my doctor to continue to think Devic's I will surely be traveling to a Mayo site and hopefully having it done. Well anyways... you have read all my posts and probably know what I am dealing with... any advice is much appreciated! I thank you for posting and letting me know there is someone out there with 1st hand experience with this disease. Thank you
Where to start...whew... The bright area would not have been missed on the MRI if we are talking about Devic's.. However regarding MS...it could. The lesions are much smaller. In Devic's it is a long signal change. I was told it would be very apparant and would also have been present. The solumedrol will help with your ON although in my case it only came back a couple of months later with another TM Attack to boot. Regarding the death... it isnt half it is 10-20% and this would be if it was acute. Believe me you are not in an acute attack. The kind of attack that could be fatal would have you paralysed ARMS and LEGS. The fatal attack would only be if you had the inflamation (the bright white signal change along with the swelling) in your cervical spine. That would possibly stop your breathing. I have read all of your posts. This wouldnt be the case with you. Believe me I was scared ****less when they told me what they thought I had...and mine would have been very obviously recurrent and not monophasic. The recurrent form is where the fatality rate is higher due to the lack of a full recovery followed by an ongoing deficit with each attack. I wouldnt worry about devic's. Like I said, if the MRI could be clear and it still be diagnosed, I would have been because with the exception of the MRI, I hit EVERY mark on Wingerchunk's diagnosis criteria. Whenever you get ON in both eyes like I did within a short time span and have TM as well Devic's/ONM is highly likely. I think I have MS, that just took a strange road. As far as the blood test...the mayo clinic has a test that can identify a marker for probable MS but not absolute and it is very expensive. It is a test they can give when you have ON and it will predict the likelihood. It isnt absolute just as everything with MS is never absolute.
I will just keep hanging in there. I am getting my first LP next week. It had BETTER show something, ANYTHING. I dont want it to be for nothing! lol
Also regarding the steroids, they may make you feel even higher anxiety. Just hang in there. They will make you feel pretty strange. Also make sure they give you something to help you sleep.
thank you so much... your words are calming to me. I did go for blood work today that tested for certain antibodies... dna something... and thyroid something... and then lyme diease. Not really sure... couldnt read the order too well. I will keep you posted and I hope we can talk again because I am very worried about this whole process... good luck with the lp... mine is wed. Thank you again
lol..mine is wednesday too!! the test was ANA it is to rule out lupus. Been there done that too. Even went to the rheumitologist did ALL the tests for that. 4 pages worth. I have a sister with SLE (systemic Lupus) so they were really working at it. I know how it feels to have your body working against you and have no idea why. Unfortunately the ONLY test besides blood work I was given during my attacks was the MRI and alway after I was put on steroids. I know if they would have done the LP then they would have found the inflamation. But hindsite is 20/20. I will be thinking of you when I am getting my LP on Wednesday.... I guess we truly are in this together now!
Curious, Just wanted you to know I have been advised to take a blood test for NMO (devic's). The mayo clinic has one. I dont know much about it but I will be finding out more. If you read my posts, I am sure you will see why.
If i'm not mistaken... Mayo Clinic came up with the test but it can be ordered by your neuro. at any blood lab. I just had the test done too (if i'm not mistaken!). It tests for auto antibodies in the blood. Which signals that the body is attacking itself. Correct me if im wrong. I have alot of questions for the neuro. on wednesday. Like... would I still need to have the LP if that blood test comes back + for Devic's or Lyme etc? As far as I understand... Devic's wont show up in an LP, its more to rule out MS.
I havent gotten a chance to read through your posts... but I will. Have you been treated with solumedrol? Tomorrow is my 5th and last infusion. It has helped my symptoms tremendously... although I dont think I will be 100% back to normal unless the tapering prednisone will also have an affect?? And one more thing I just have on my mind... I wake up in the middle of the night and my stomach will be numb and I will have more numbness in my legs and feet than I do during the day now. I almost feel like I am putting too much pressure on my spinal cord, and if it is in fact inflammed, then it is causing the numbness in my sleep. It does clear up after being out of bed... but it's still just a scary feeling. And I also decided that I may not be having trouble breathing, its just that I can feel my heart pounding so much near my lungs that it throws me off. Its scary to not have control over your own body... talk to you soon! Keep in touch
my symptoms are always worse as the day wears on. But also the steroids had some weird effects on me too. I always felt like my head was going to explode. Yes, I have had the solumedrol. 3 rounds. One 5 day round and two 3 day rounds. I finally said no more this last time. I told them to get something that would work long term or forget it. It would bring me out of it but then 6 weeks to 2 months later I would just have another attack. My last attack was the 2nd week of june I think. It lasted about 2 weeks. I am doing alot better now. I am just hoping it holds a bit longer. The LP will pick up some proteins I think that will just show the inflammation.
For me the worst of it is when I am coming out of the numbness. That is when I would be in the most pain. Really bad spasms and the slightest touch would be excruciating (Sp?) My spelling is horrid, I know. I am going to ask for the test. I might as well rule it out like I have been ruling out everything else known to man!!
Also, I just wanted to add that the steroids can make your heart rate and blood pressure go up a bit. That may have something to do with your breathing difficulty.