Hi everyone
I am back on this site after a long break due to many medical issues I had going on. Originally I was diagnosed with TOS - Thoracic Outlet Syndrome. I had a very rough time with that. I had surgery in January 2008 for it. I then had thoracic spine surgery 5 months later due to 2 herniated discs causing spinal cord compression. It was a rough year. I have seen so many Dr's and so many have mentioned and MS. They kept taking blood and testing but nothing showed. I also had several brain MRI's and it was negative for MS is what they have said. I have been exhibiting many many symptoms of MS. I also have CRPS/RSD. I do have the burning pain and most of the symptoms that go along with that. I have terrible burning pain 24/7 plus changes in color of my skin. I hate this redness I have everywhere. Especially on my face and upper chest. I have so many things going on and the Dr's keep saying I'm such a difficult case. I also started having eye trouble. I was getting pain in the right eye, headaches, blurry vision and sudden loss of vision along with naseau. FOr a few days it was so painful to look left, right or up and down. i could only look straight. Lights bothered me and I could barely make out objects. It has gotten a little better but I can tell my right eye is really bad. I have lost color vision in the right. I saw a neuro opthamologist. On the color test, I got 2 out of 8 correct for the right eye and 8 out of 8 on the left. My vision changes frequently. It just changed again for the worse after being checked just in April. I have 3 pairs of glasses now. I never know which will work best.

The Doctor's don't feel this eye problem is related to the TOS and RSD. They think it's something else. I had and OCT test done and it showed optic neuropathy. My neurologist called last week and told me that they found that I have optic nerve damage and now they have to look further. I need more tests. They are looking for something. My PT said it sounds like a autoimmune or MS diagnosis is in the works.

Can MS start in the eyes? With all my bloodwork, MRI's and a spinal tap being negative for MS, can I still possibly have it or starting to have it? I was reading some info on line that the optic nerves can be the first sign. Can lesions start there and they just haven't found them yet? Has anyone been diagnosed with MS from an eye specialist? I am wondering if I have MS and not RSD or do I have both. They seem to be very similar diseases.

They feel as though something else is going on and been missed. I have trouble with my legs and spasticity now. My muscles get so tight. I have trouble walking at times. My knees even give out at times. Sunday was awful and I just couldn't walk right. I was leaning. My gait is way off. I'm a mess. I was just wondering if anyone could give some insight to this.

THANKS!

Many times, MS is found by an Opthomoligist. Optic neoritis is often the onset of MS, even with clear MRIs.

Welcome back Momz..

There are two sides to this, I'd recommend reading both and seeing what you think.

Francis, Delicia et al. 1987 A reassessment of the risk of multiple sclerosis developing in patients with optic neuritis after extended follow-up

- and -

Miller, David et al. 1988 The early risk of multiple sclerosis after optic neuritis

Here's a newer one, but I could only find the abstract.

Beck, Randy et al. 2003 (abstract only)High- and low-risk profiles for the development of multiple sclerosis within 10 years after optic neuritis: experience of the optic neuritis treatment trial

Years ago, Kim had an episode where she completely lost her vision for a few days. This scared her big time. It was only one instance, but certainly a significant one. Ken

Except for some numbness I had that began in April of 2006 (which a quack Physician's assistant told me was a sprain! she also misdiagnosed mononucleosis 10yrs earlier), my first MS symptom was optic neuritis in August of 2006. Giant blind spot obscured 2/3rds of my vision in the left eye for several months and my color vision was fubar for most of a year. I didnt have any treatment or steroids for that then.

My vision is now back to near normal of what it was before I had optic neuritis. I had another exacerbation in june and july of this year. Diplopia (double vision) I couldnt stand the vertigo that the double vision was giving me, and the double vision was so...irritating to me that I begged for IV steroids. My vision is again back to near normal now, a month after steroids, but it's really easy to trigger the double vision to come back. (fluorescent lights, large crowds, and heat seem to set it off fairly easily)

I'm also getting vertigo fairly easily still and do occasionally wake up to being spun around by the vertigo. At least the double vision for the most part has gone away. It's not constant anymore.

One plus to the steroids, I think it helped the residual problems I had from the optic neuritis I had in 2006. Some colors (greens and blues) look a LOT better to me than they did earlier this year. It does seem like I have to strain my vision to read at distances that I could read easily earlier this year tho.

Bad side to the steroids, I have really horrible insomnia lately. But, at least I can see now and I'm not walking into walls and doorways and tripping over things.

my first diagnosable symptom was optic nueritis. That is where it all started for me.


hugs for you

Hi Momz!

My first episode was optic neuritis. I had all the symptoms you had with it except the pain.
After an LP, evoked potentials, a blood test that checked for 17 diseases, and an MRI, I was diagnosed with MS. It was way too easy!

There are a lot of folks here who have the same test results you have. It may not be showing on the MRI and in some of the tests, and still be doing subclinical damage. Only time will tell.

It sounds like you have been through a very long road here with your health. I hope you find some answers.

Oh, I should mention that when I had my brain MRI, they never found MRI evidence that I had any lesions on my optic nerve.

When I had another (two) MRI's four months later, they did find a lesion or two on my spine. (had two MRI's then because the first MRI they couldnt get any contrast in because the nurse at my doctor's office destroyed my one good vein the day before the MRI)

When I had the 6th cranial nerve palsy in June and july, I pretty much refused the MRI because all it would do is give me a higher medical bill, we could already tell that I had a lesion on the nerve, we didnt need to take pictures to confirm it. Yay that my neuro is pretty much old school and can tell you where the lesion is by your symptoms and doesnt feel the need to confirm it with the MRI.

Thanks everyone for your helpful replies. I really appreciate it. I am very worried and feel that definitely something else is going on. It's weird that so many Dr's over the last 3 years have mentioned MS over and over again. I hear it everytime I go to the Dr's and give my symptoms. The nurse from the eye Dr called me yesterday. I am going to Wills Eye in philly. She was very helpful and explained some of the tests they want to do. I have to have an ERG and a multifocal. The OCT test showed optic nerve damage and something that is definitely making them lean towards MS. She told me the signs are there but I would have to get more info from the Dr. Also my neurologist has been in contact with them so I am waiting for him to call me and hopefully give me more insight as to what is going on. I just had an MRI of the brain in June but it didn't show anything. I was in the hospital for 4 days. The neurology team said I have 6th cranial nerve palsy and it looked like something wrong with 3rd cranial nerve. My right eye is the only eye affected right now. My eye lid droops. It looks swollen at times which could be from the RSD. I can't even open that eye all the way. If I try to open it with my fingers, it hurts and just doesn't cooperate. My pupil also dilates and gets big then also gets so small you can barely see it. My two pupils are rarely the same when examined and in general. This sure looks like signs of MS after reading information online. Also, I never realized I had color issues until they had me close my left eye. Everything red looks pink, etc. I was shocked then I got upset. I just don't know how much more I can handle. I've been through so much already. I guess I can have RSD and MS. Both dibilitating diseases. Plus the TOS issue.

This is what really makes me worry...yesterday I seemed pretty good all morning then I had a sudden attack. I was with my boys out at the thrift store and I suddenly got very dizzy, hot feeling all over, ears ringing and blurry vision with bright spots. It was horrible and unfortunately this isn't the first time this has happened. It's happened a couple times while I'm out. I had it happen at the grocery store and when driving. I pulled over and waited for a bit. It now makes me realize this keeps happening. I never know when it's going tohappen either. I was taking my meds and it still happens. I came hope and I could barely walk. I couldn't even lift a piece of paper. I dropped everything I tried to pick up. I was in pain all over and also like this numb feeling in my legs and hands. My vision was just completely awful. My son was sitting on the couch in front of me and if I didn't know it was him, I would not have been able to make out who it was and if it was male or female..he was a complete blur. If I covered my left eye, I couldn't see much of anything. I didn't feel well for a while. I was so out of it. I couldn't remember anything I did..I was doing things and not even knowing what I was doing. By dinner time, I couldn't even make dinner. I tried but was so slow. IT was like this huge attack and it subsided and now I'm better today so far. My vision was even better this morning, I am wearing bifocals now to help me read and see.

I am just wondering if this is really MS and it just never showed up on any tests. They did so much blood work though and a spinal tap in June. They thought MS but nothing came up. That's why I was wondering..can lesions be in the optic nerves and will these tests show? It's hard for me to go through any tests right now because my RSD is so bad. it flares up for a week after any kind of testing. The nurse said I really need to have these done. Lucky me

Thanks again for your help and support...I don't really understand MS either. I'm still learning about the RSD/CRPS. I am seeing they are very similar.

it sounds like you had a hard day.

lesions on the optic nerve can be very difficult to spot, even if the eye surgeon is looking directly into the back of your eyeball, with a bright light peeking only see the very tip and of the optic nerve, the nerve itself is about 2 inches long which makes it very difficult to see. I know when my eyes surgeon does my checkups he makes sure to caution me that he can only see the tip. An MRI can locate the nerve and lesions on the nerve, but they have to be looking for that, and normally they want to use GAD intravenous dye. Were they looking for that when they did your MRI? Visual issues scare me more than any other.

Since there are so many other diseases that can mimic MS, it's very difficult to make a quick diagnosis, sometimes the waiting game is more frustrating than the disease itself. You are in good company here, most of us know just how frustrating that kind of day can be

I hope you're feeling better today.