Optic Neuritis, joint pain, fatigue: clear MRI, clear spinal, clear bloodwork

[skc04]

Almost 4 years ago - I noticed blurred/dim vision in my right eye - after much testing, was told optic neuritis, then maybe optic neuroretinitis - has never improved - still the same after 4 years. Through the use of photography - the doctors say it is still ongoing as they can see changes in the optic nerve inflammation - leading them to believe it is some kind of underlying disease. In addition, I have had several other symptoms including joint pain, debilitating fatigue, headache, migraines, IBS, high blood pressure ( I am 28 years old and have taught fitness classes for 10 years - eat well and exercise alot and have never had a problem with blood pressure), dizziness and blurred vision after exercise that lasts about 10 min. and goes away, extremities like fingers and toes turning white when cold, and other random symptoms. I have had several MRI's, lumbar punctures, bloodwork, and almost every other test imaginable - all showing no signs of any disease. I find it difficult to get any answers - and these symptoms are starting to get in the way of work as well as my life - any information or ideas would be helpful - thank you!

[Carrie1704]

Try thyroid conditions too.That can affect eyes, cause migraines, joint pain etc and for the white hand s? raynauds. Maybe Ms  .Maybe you have some food allergies going on or something like coeliac or Chrohns. You need more tests and also consider that not all of your symptoms are necessarily related .They could be different things!

[bblair]

I guess we can't post emails so I'll try again.
Bblair4(at)nc.rr.com

[bblair]

Hi - Your's sounds alot like mine.  Email me at ***@****, I'd love to compare notes.

[Nikki6676]

Hi..30 year old recently diagnosed with Optic Neurits, all test negative for MS, Cat scratch disease..everything The doctors are still convinced its cat scratch disease. I see from your posts that most are having difficulty with the eye recovering; finished my steroids and anti biotic treatment with no visal improvements and its been almost 2months now. Follow up with neroretinologist last night who now describes neuroretinitus.

I am so frustrated and want answers..is my vision going to return; will it be permanently altered??

thanks, email me at ***@****

[jennypugli]

This really sounds like Sjogrens syndrome.  PLEASE SEE A RHEUMATOLOGIST TO GET IT DIAGNOSED.  There's no one blood test to diagnose.  It's rare-when I say rare there are only 5 people in the state of PA who have it.  My mother has it.  It generally affects the eyes and mouth.  But it is a systemic disease and can affect any body system.  It attacks the muscles which will make you weak.  I can go on and on but please see a rheumatologist and ask about this.

[Mimi 7]

I'm 47 yrs old and had a cervical spinal fusion of theC6-C7 disc in 2005.  Prior to the surgery in 2002 I had been rear ended in an auto accident and had sought other non invasive treatments until the only option left was surgery.  I have never recovered since my surgery.  Not only do I still have pain I started having these symptoms of major fatigue, trembling, sweats and lightheadedness.  I might add that a cadaver bone was used in lieu of my hip bone (this was a mistake made by my doctor).  Shortly after my surgery the bone started to break down and reabsorb.  My doctor could not figure out why.  After several months of no diagnosis and the bone only showing slightly minimal fusion my Orthopedic surgeon suggested that I might have a titanium allergy.  He ordered the plate from the rep and placed it on my arm two different times and got a reaction both times on both arms.  He conferred with an allergist and the allergist concluded that indeed it sounded like a titanium allergy and suggested removing the titanium plate and screws.  I went to a neurosurgeon for 2nd opinion.  He said he didn't believe in titanium allergies and ordered a discogram (which I didn't have the first time).  Discogram showed that C5-C6 disc had major tears and felt like they were there at the time of my first surgery.  Stated surgery was only option.  Since that time I have had a TIA (ministroke), fluid buildup around my heart, allergic reaction(rash all over, scaly skin, itching) eye pain, hearing loss, swallowing problems and chronic constipation called (colonic inertia).  Most all of these things as I have been told by each specialist respectively is that they are rare and unusual for a 47 yr old previously healthy, active and physically in shape with no history of stroke or heart disease in my family and I have never smoked and on occasion have a drink or two of alcohol.  I was tested by the Melisa Foundation (check out their website) with a blood test against 10 metals including titanium dioxide and titanium trichloride.  I reacted positively to 6 different metals including a mild positive reaction to titanium dioxide and a "toxic" reaction to the tiatium trichloride.  My primary care internal medicine doctor tells me that based on the information my white blood cells decreased by 32% when tested against the titanium trichloride.  This means per my doctor that it is having an affect on my immune system.  My primary care and my cardiologist have referred me to the Cleveland Clinic in Cleveland, Ohio for evaluation of all my symptoms and hopefully they can put the pieces of the puzzle together.  I am told they have a great Dermatologist that specializes in Titanium allergies.  Who'd have thought--a Dermatologist?  I have been unable to work since my surgery in 2005.  I rarely leave home because I have zero energy and feel bad all of the time.  This is a complete 180 for me as I have always been extremely active and had been on my job for over 15 years.  I ended up losing my job as a result of being unable to return!  The past 2+ years have been very difficult but you just have to keep pushing.  If you have insurance coverage I would check to see if you have to have a referral from your primary care physician to see a specialist and I would push for that if you do.  If you do not, do what I did.....take your health care into your own hands.  My primary care didn't refer me to these specialists.  I made appointments with all of them after having a TIA without any of the normal symptoms.  It will probably still cost me a ton of money (that I don't have) but it is worth it to find out what is going on.  By the way, MS can be caused by a titanium allergy in severe cases per the Melisa Foundation website.  The doctor and staff I dealt with there were very professional and helpful before and after the testing.  Be prepared though, when you mention "titanium allergy" to your doctor(s) don't be surprised if they totally disregard that theory.  This is a very contraversial issue in the medical field so I am told.  I hope this may help you in some way.  

[Apery]

I am 32 and was diagonised to be having optic neuritis in 2001, seven years ago when i lost sight in my right eye, was treated with predisonoe for 2 weeks but didnt recover.  Unforltunately after 3 years the other eye blured it took long for the eye doctors to tell me that it was the same thing that was happening to the other eye. I finally resulted to see a neurologist who sent me for blood tests, did MRI, lumbar puncture and no disease was found then was put on predisonone for about seven months. I soppted the drugs about a year ago and my sight has greatly improved(the left eye).

Occasionaly I do have sharp pains behind my eyes and disapears after a short time.  My question is do people get totally healed of this disease and if so what can i do about the occasional sharp pains i get behind my eyes?  What else can i do to improve my sight coz i only have the right eye seeing and  i would love to see well.

I will appreciate any kind of help.  Thnak you.

Regards

PERIS

[bblair]

I'm 43 and was diagnosed 2 years ago with neuroretinitis and treated with oral prednisone.  I went through many tests and MS was ruled out.  The doctors thought it was a one time occurence and I only lost partial vision in my left eye.  One year later it returned in the same eye and after more prednisone I lost all vision in the left eye.   This past Sept. it returned in my right eye and I was hospitalized and was put on IV Steroids and had every test that could think of run on me.  After all tests came back negative I'm being treated by a retinologist and rheumatologist that work together.  I've been on Azathioprine for 10 months as they're treating it as an autoimmune disease.  I'm finally weaning off the prednisone and so far so good.  I'd love to talk with anyone with a similar condition.   Contact me at ***@****.   Thanks

[bblair]

I'm 43 and was diagnosed 2 years ago with neuroretinitis and treated with oral prednisone.  I went through many tests and MS was ruled out.  The doctors thought it was a one time occurence and I only lost partial vision in my left eye.  One year later it returned in the same eye and after more prednisone I lost all vision in the left eye.   This past Sept. it returned in my right eye and I was hospitalized and was put on IV Steroids and had every test that could think of run on me.  After all tests came back negative I'm being treated by a retinologist and rheumatologist that work together.  I've been on Azathioprine for 10 months as they're treating it as an autoimmune disease.  I'm finally weaning off the prednisone and so far so good.  I'd love to talk with anyone with a similar condition.   Contact me at ***@****.   Thanks

[LindyMc]

Almost a year ago, I severly broke my right elbow and shattered my ulna bone. During the surgery, my othopedic surgeon put eight titanium screws in my elbow and a titanium plate covering my ulna bone. Since my surgery, I have developed severe Neuropathy in all my joints. It is chronic and I can hardly walk when I get up in the morning. Is there a chance, that I am allergic to titanium and if so, could this cause this kind of reaction? Before I broke my arm, I experienced neuropathy in my feet and hands only, now it has spread to all my joints. I would appreciate any information you might have on this matter.

Thank you.

[tvcommericals]

Last March I noticed that I was seeing different coloring out of my left eye, two days later I went to see my eye Doctor and he sent me directly to a specialist and a Neurologist.  Within the four days it took me to get into the Doctor's I had went completly blind in my left eye.  I was told that I had a serve case of optic Neuritis, and have had and still do have alot of pain behind that eye.  So I was started on intravenous steriod treatment,for seven days 1000mg's was pumped through me and I was never so sick in my life as I was those seven days and for two weeks after it.  I have had three MRI's of my brain and my spine, but it shows no leasions as of yet.  My eye started getting some vision back in it, but only to a certain degree I see objects and colors but can't make out what thety are.  My vision now is 20/2400 which is still legally blind in that eye.  I am really scared that I will never get my vision back and now I am starting to get pain in my right eye but my vision seems to be ok for now. The Doctor's say that I could delevop MS but they really do not know.

[bobssis1]

A week ago I started having problems seeing and within 4 days was having severe pain while movimg my eye and very bad headaches as well as decreased vision acuity and being able to see colors.  Everything was gray and dim.  Thurs I saw an eye dr who said I had optic neurits and recommendd I saw my neurologist because it could be a sign of ms.  Within 2 days I had bloodwork , an mri of the brain ans infusion therapy (3 days of intravenous steriods, actually tomorrow is my 3rd day)
I am seing the neurologist again on tues.  He said it could be a 40 % chance of me developing ms.  I also have had other symptoms bt they have always been something els IBS, gerd, carpal tunnel, etc. It is a possibility that these actually could be ms.  I waould find a neurologist and ask about the intravenous steriod treatment.  In a study it showed that it slowed doewn the chances od getting ms.  
Also I read about symptoms being worse after exercising and hot showers which is a sign of Utoffs syndrome.
Try and find a neurologist who is knowledgable on ms.

good luck

[adelaide]

It still sounds like MS to me.  I wonder if an MS specialist (not all Neurologists are MS specialists) would be willing to take a look at your MRI pictures and consider your symptoms. There are treatments out there that slow the progression of the disease, so getting a diagnosis (if it is MS) is real important; by the way, spinal fluid may or may not be abnormal with MS.  It depends on whether you are having a flare up at the time they do the lumbar procedure.  Do you have any symptoms when you are over-heated but not exercising?  Like when you take a warm bath? Keep us posted.

[skc04]

yes - been tested for EVERYTHING ( lyme disease, cat scratch, std's, lupus, MS, cancer, diabetes...many others ) all bloodwork comes back negative for any signs of disease.

[Jenny Wren]

Have you been tested for Lymes disease?  Optic Neuritis is sometimes caused from MS, but not sure what else if you had a clean MRI (which detects MS). Blurred vision after exercise can be caused by MS also.  From everything that I have seen on the net Lymes and MS mimick each other. But being that clean MRI and spinal, probably isn't MS.  Lymes can show on an MRI also.  Good Luck.