optic neuritis question

[dana1985]

Just a quick question...

Is it possible to have optic neuritis without the vision loss?

I had this awful pain in my right eye whenever I looked down from January 2015 into February 2015. The past few days the pain has started to return... and with the pain so does all my nagging questions...

Appreciate any input.

[ElliotB]

Yes, you do not have to have total vision loss to experience Optic Neuritis.


You may find these articles of interest:

http://www.mayoclinic.org/diseases-cond ... n-20029723


https://en.wikipedia.org/wiki/Optic_neuritis

[Youarethecure]

It is very possible. From no vision loss to total vision loss.

For me, it starts with just pain that gets worse and worse until vision is affected as well. My regular "daily" symptoms tend to include some random eye pain that strikes for no reason. I always have to hold my breath and pray its not the start of an optic neuritis bout.

Have you been diagnosed with anything? What makes you think it is optic neuritis related?

Best wishes,

Chris

[dana1985]

I have had a variety of symptoms since June 2014. My PCP has suspected MS but all of my tests have been fine. In January this year when the eye pain started the opthalmalogist right away thought it was optic neuritis. She said there was nothing wrong with my eyes or retinas or anything. But when I went back 3 days later for follow up and still had no vision loss she said she had no idea what was causing the eye pain. It lasted for about a month and then went away on its own.

I still have problems with symptoms..but no diagnosis until labs show something..A pain specialist recently started me on gabapentin and most of my pain symptoms have responded to that.. I have been told to wait another year or two and start all the labs all over again in hopes they will see something over time.

[Youarethecure]

What "labs" are you referring to?

Have you done MRI's? Spinal tap? Bloodwork?

How old are you? M/f? Any family history of autoimmune diseases? What other symptoms do you deal with?

[dana1985]

I am a 30 year old female. My biggest issue is these painful "episodes" that come on. Sometimes hurt soo bad I can't even bare weight. Most of the time they come on quick and then a few minutes later its like nothing ever happened. Only a few times has it lasted longer and left me limping for hours or a day or two. I have had weird numb/tingling/crawling feelings in my legs and buzzing feelings in my feet. I've had periods of constant widespread twitches. I have memory issues once and awhile like going to a room and having no idea why i am there (and my husband always praised me for my awesome memory so its hard feeling so lost and dumb sometimes). And then there is the eye pain too.

I have seen sooo many specialists and done tons and tons of bloodwork. I have had mris of thoracic and cervical spine, mri of eye, bone scan, xrays, emg/ncv. I have not had a lumbar puncture yet though (and honestly that scares me death just thinking of it!)

Everyone just keeps saying they dont know whats wrong with me since labs all come back normal. So frustrating. Pain dr says that since gabapentin is working with pain episodes then could mean its neuropathy and maybe in a year or two i go back to neurologist and start over. Just hate waiting and not knowing.

I appreciate your replies!!

[Youarethecure]

Did you ever get an MRI of your brain? Have you seen an MS specialist neuro?

If you don't mid sharing, what is your b12 level at? And what tests were used to obtain the number?

I do not know much about it or if there is even testing for it, but does Fibromyagia fit as a diagnosis?

My advice to you is to get ahead of the game. Whatever is going on, being healthier can only help. Diet, nutrition/supplements, and exercise can only make whatever situation your dealing with better. This will also give you piece of mind, knowing you are doing everything possible to fight against whatever is happening with you.

[dana1985]

I think they kind of feel like the MRI of my eye orbit was enough... I on the other hand don't feel the same way...

They did a blood test for vitamin b12 in August 2014. The standard range they have is 211-946 and my value was a 352.

The only things that have come up "not normal" are some blood work results with lymphocytes, platelets and eosinophils not where they should be. And I am vitamin D deficient. That's all they have so far....

I have not been able to see a MS specialist unfortunately. I've seen neurologists, a sleep and pulmonary specialist, rheumatologist, immunologist, infections disease specialist, ophthalmologist, and pain specialist.

As for fibromyalgia... I don't have any trigger points and I have read that the symptoms are worse in the mornings, whereas mine get worse in the evening. I don't know if they have any test for that though to truly rule it out.

I have been eating a lot better (my husband was just told he is pre-diabetic so I am forced to make healthier meals). I have been trying to do more walking also. And my work is really big on promoting good health and exercise and I just finished participating in their walking competition. I only take Vitamin D supplements at the moment. I was previously taking a magnesium, zinc, calcium supplement but stopped because another medicine I was taking said not to take with magnesium.

[Youarethecure]

Ok first off, you should find new doctors. When searching for possible MS, only doing orbitals and not a full brain MRI is COMPLETELY insane. Find an MS specialist, and that doctor will laugh at the fact that someone told you "orbitals are enough". I have had optic neuritis three times in my life.... my orbitals always "appear normal" and my brain is covered in lesions.

Now as far as that b12 goes, that could be a problem too. Hopefully, lyndacarol or NHE (two members on this site) can chime in and tell you what they know about b12 deficiencies. My knowledge about it is not too extensive. But I do know that our "standard range" is far less when compared to other countries. B12 in the 300's is a deficiency depending on who you talk to. It also depends on what tests were used to get the number, plus if you were supplementing at all before the testing.

No doctor, neurologist, or any person looks at MS like an MS specialist neurologist. It is a whole different world when with a doctor who specializes in MS. I think that is clearly the next step you need to take with all this.

And most importantly, I am no one. So don't take what I am saying as gold. This all is just my opinion. I am just some 26 year old man with MS

Chris

[dana1985]

Yeah I definitely want to push for a actual brain mri soon.

I actually think my PCP has bee great and the immunologist actually cared too, but the rest just said they didn't know and then moved on like it doesn't matter. I have even had doctors say I should just go see a psychiatrist. I do have a hmo though and need referralsf or everything and while my PCP would probably work with me I would have to go outside my network for an ms neurologist and it is a lengthy process. Will definitely have to look into it though since nothing else seems to be getting me anywhere.

Now if I am low in b12 can I just take a supplement to boost that a bit and see if it makes a difference?

And i totally appreciate your advice and input. How was your diagnosis process? I have heard it can tske years..

Any ideas on how long it can take for lesions to appear if mris come up clear the first time?

[Youarethecure]

I had optic neuritis at age 19, along with 4 brain lesions. Not enough to diagnose but just about enough. I buried my head in the sand for years pretending it could never be MS..... 5 years later had optic neuritis in the other eye plus a bunch of other symptoms (many lesions on my brain) that led to my swift diagnosis..... well really it was about 3 months of depression and denial of everything first lollol. Then I got back with the doctors and got an MRI which was too obvious.

The most important thing to know about MS is that it is different for everyone. Every single thing is a variable. Lesions, location of lesions, symptoms, severity of symptoms, age, gender, relapse rate, ability to repair the body, etc etc etc. So it is very hard to answer questions until you know what your own MS is.... and even then it varies. The last relapse I had was so minimal compared to the relapse that led me to being diagnosed.

Again, I am not the most knowledgeable on b12. But you can get shots which definitely help. You can also supplement, of which any excess b12 is flushed out of your system anyway. It does not happen over night though..... errr maybe it does, with the shots? But I don't know.

[NHE]

Now if I am low in b12 can I just take a supplement to boost that a bit and see if it makes a difference?

A value of 352 pg/mL is in the gray zone for diagnosing a B12 deficiency especially for someone experiencing neurological symptoms. Moreover, simply measuring B12 levels is not sufficient for evaluating how your body is processing B12. It's necessary to measure homocysteine, methylmalonic acid (MMA) and red blood cell (RBC) folate as well. Homocysteine and MMA are two metabolites that can build up to high levels when B12 is low. In addition, if folate is low it can drive down B12 values over time as methylfolate is used recycle inactive B12 back to the active form. The RBC folate test is better than the serum folate test as it gives a better evaluation of your long term folate status and is less affected by daily variations in your diet. If possible, it would be best to get these additional tests run before taking supplements as they will skew the results.

More references about B12 can be found in the following discussion topic.

http://www.thisisms.com/forum/natural-a ... 24857.html