B12 & Eye Issues & Eye Cancer

[TexasMomSLK]

Hello all from Dallas, Texas! This is my first post here. I am very grateful for this site, it has helped on my Pernicious Anemia journey. I was diagnosed officially in June of this year. My blood still shows macrocytic but my iron and B12 are up, yay!

Now, onto the eye issues. I started to have double vision earlier this year and in either Martin Hooper's book or Sally's book, it was mentioned to go to an Opthamalogist to check the optic nerve which can be damaged by B12 deficiency. So I finally got around to it in August, just 2 weeks ago. Low and behold a Tumor was found in my left eye, Ocular Melanoma, a very, very, rare form of Cancer. My sub category is Choroidal Melanoma. The benign form is called Choroidal Nevous. It can show up as a freckle in your Iris and can only be seen during an exam by eye dialation.

Unfortunately, my Optometrist missed this for the past couple of years. This is more commonly found in people of light skin, blond hair and blue eyes. I actually have brown hair and brown eyes.

If anyone is having double vision, little light flashes in the corner of their eye or floaters, go to an Opthamalogist and have an in depth eye exam. Skip the Optometrist!

I do not think there is a connection to PA in this but just wanted to share since people mentioned eye problems. God Bless all here!

[fbirder]

Yup.

March of this year I suddenly got double vision. Luckily it started three days before my scheduled neurologist appointment. I asked him for a brain MRI, he agreed. So when I went to see the orthoptist the following week we could already rule out anything nasty.

Mine was damage to the fourth cranial nerve caused by accidentally head-butting the oven extraction hood (a tiled stone monstrosity). Almost all gone now,

[Nackapan in reply to fbirder]

I've had trouble with vision since my B12 defiency.

Ive recieved my letter now and having a brain and spine MRI Scan. Had a brain one in November last year.

So if anything up with my eyes this should show up shouldn't it? Or do they specifically need to be asked?

[TexasMomSLK in reply to Nackapan]

From what I know, it should show up, whether they catch it or are looking for it is another matter.

[TexasMomSLK in reply to TexasMomSLK]

Oh, sorry, I was thinking anything with the eye, not thinking nerves. That's fascinating that they could find the issue with the fourth cranial nerve. Simply amazing.

[fbirder in reply to Nackapan]

No, the MRI showed nothing wrong with my nerves or the eye muscles themselves. Any damage to the fourth cranial nerve would be difficult to see as the nerve is very small.

[TexasMomSLK in reply to fbirder]

Ouch fbirder! Glad they found the cause and that it is almost all gone! Yay.

[Nackapan in reply to fbirder]

Do the orthoptiSt found the damage to the cranial nerve?

[fbirder in reply to Nackapan]

No. It's only possible to infer that nerve was damaged from the symptoms and the progression. There was no doubt that it was that nerve, whatever the cause was couldn't be seen on the MRI (so not a tumour pressing on it) no reason to suspect any other problem, neurologist said that it certainly had nothing to do with my idiopathic peripheral neuropathy.

Orthoptist said it was probably trauma and, if it was, it should slowly improve. It slowly improved.

[Nackapan in reply to fbirder]

Okay thanks for the explanation. Glad it's healing. As I'm still struggling with cranial nerve pain and having another brain and this time spine MRI I thought id ask. Gp and neurologist have mentioned vestibular disturbance and cranial nerve damage.

[Nackapan in reply to fbirder]

Glad it's healed okay

[wedgewood]

That is so good of you to mention that eye condition . You are acting in the traditions of this forum . Welcome and thank you so much .

[TexasMomSLK in reply to wedgewood]

Thank you wedgewood!

[HeartyGilly]

A friend was diagnosed this week with Ocular Melanoma so perhaps it is not quite so rare.

[Nackapan in reply to HeartyGilly]

Let's hope a coincidence and it is very rare hey

[TexasMomSLK in reply to HeartyGilly]

I am sorry to hear your friend was diagnosed with this. Please tell them to join an Ocular Melanoma support group on Facebook to see how others cope with it. Their life is going to be in a whirlwind for the next couple of weeks. It is the most aggressive form of cancer, micrometastasizes and once it is found somewhere else, 6 months is the average life span from there. So be supportive and help out in any way, they will need it.

[HeartyGilly in reply to TexasMomSLK]

Thank you so much for that. I will pass on the info about the support group to his family.

[TexasMomSLK in reply to HeartyGilly]

Also pass on that it is not their fault! For the first week I kept trying to find an answer as to how this could have happened. A huge boulder lifted off my shoulders when I realized it is from a genetic defect and not something I did to cause it. This may aleviate the stress of self blame for your friend.

[HeartyGilly in reply to TexasMomSLK]

Thank you for that. I will pass it on.

[Nackapan]

Thank you. I actually went to a consultant Opthalamogist on request. My optics in referred me. I was expecting drops to dilate my pupils. This was not done?? He just said my optic nerve fine and eyes healthy. Must be the nerves messages .

Sorry to hear your diagnosis.

How is it treated?

[TexasMomSLK in reply to Nackapan]

Thanks Nackapan. Generally there are 3 options. 1. Total eye removal. 2. Proton Beam Radiation straight to the tumor. 3. Brachytherapy where a gold disc imbedded with radiation seeds is inserted onto the tumor for a few days then removed. I will most likely have option #3.

[Nackapan in reply to TexasMomSLK]

I hope it goes well and zapps it.

[TexasMomSLK in reply to Nackapan]

Nackapan, they need the dilate to see into the eye. Always have them dilate, insist on it.

[Nackapan in reply to TexasMomSLK]

I know I thought it odd. That was the whole point of being referred to a specialist!

[exhausted99]

Yes I have this too, mine is benign and will be checked every year. It was found during a routine diabetic eye test.

[TexasMomSLK in reply to exhausted99]

I am so glad to hear it is benign! It is rare for it to turn cancerous so relax. Also, this is found mostly in Northern Europeans, just like PA, i.e. genetic predisposition.

[BirdlessBox]

I was having occasional stabbing pains in the eyeball. I read it could be related to the B12 deficiency, and that eyesight can deteriorate from having a deficiency. My Mum who was B12 deficient ended up with glaucoma, cataracts and macular degeneration, both her brothers also had M.D.. They were all A pos. blood types who tend to low stomach acid so they may have needed more B12 too.

[TexasMomSLK in reply to BirdlessBox]

How sad and painful, I am sorry she had to go through that. Hopefully your eyes will be OK now that you know part of the issue. Big hugs