Optic Neuritis and other symptoms - no signs of MS?

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 ( tested for all STD's, HIV, Lyme Disease, Cat scratch disease, thyroid, diabetes, and others....)- 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!

[Forum-OD-MP]

yes, that sounds a lot like MS to me.  a young, healthy female with optic neuritis and neuro complaints...it certainly fits the profile.

i have multiple patients with a diagnosis of "probable MS".  the problem is no neurologist wants to officially diagnose MS until/unless they see plaques on the MRI of a certain size.  if the person has NO plaques or small plaques, it doesnt matter how much it "sounds" like MS, or how many neurological complaints a person has, they will refuse to diagnose MS.  thats because there's a big medico-legal problem in saddling someone with a diagnosis of MS.  you change their life, suddenly they are pretty much un-insurable, they become depressed and all sorts of other things happen.  so no one will tell you that you have (or dont have!) MS until they see white spots on your MRI of a certain size.  but everyone knows that plaques dont appear in the initial stages of MS in MOST cases.  so there are a lot of people who have early MS, but they cant/wont prove it yet.

but you're right.  that sounds like MS, and your neurologist probably thinks in the back of his/her mind that MS is a probability or at least a distict possibility.  that being said, there *are* other things that can cause the symptoms that you describe, so i the neurologists are right.  no one *really* knows whats going on with you.  i certainly dont.

[skc04]

Thank you very much for your comments - that's pretty much what I suspected - is there anything proactive I can do in the meantime to help prevent worsening of the disease? I already exercise regularly and eat healthy.

[Ag-i-doc]

not that i know of...

[mattison]

Your question interests me because I am 29 years old and four weeks ago visited the optometrist due to a cloudy spot in my left eye. My only other symptom was headaches localized to the left side of my head. After taking a few tests, he sent me directly that day to an Opthamalogist and then he performed a visual field test that showed a huge area of abnormality in my left eye and small area in my right eye, In addition my optic nerve was swollen and he stated the veins entering my eye were squiggly instead of straight indicating some type of pressure or abnormal blood flow. A CT showed no major tumors, but my MRI showed a lesion in my left temporal lobe and a cystitic area near my thalamus. A spinal tap came up negative, eliminating a pseudotumor, MS, viruses, etc. and then a MRI with spectroscopy showed no signs of tumor/cancer. The lesion hadn't changed in size. I am seeking a second opinion due to my age because the doctor can't give me any indication of what he thinks it might be. He did test for MS, but after the spinal hasn't mentioned it. Has anyone else had a similar case. Any comments appreciated.

[grannyseven]

I need help.  My daughter has head drusen of the  optic nerve and is losing her eye sight ..Can anyone help her? Please  , she needs help fast--tell me what to do/