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Sjogrens Topics => Living With Sjogren's => Topic started by: 12lovehim on September 06, 2011, 11:03:23 PM

Title: Peripheral Vision Loss... I am so bummed..
Post by: 12lovehim on September 06, 2011, 11:03:23 PM
Hello Family... So my rheumy and Primary Care Dr's couldn't perscribe Restasis so they sent me to a Eye specialist... So dry eye turned into "Do you know that you have a 40% peripheral vision loss, you can't let these things go"..  I was like... How can I tell with these migraines I have had. It hurts to see most of the time, and I thought my Dr called them floaters so I just thought it was normal..
Needless to say he looked at me like I was crazy...

So after 4 hrs of eye exams.. I have an emergency secondary exam tomorrow to verify findings and need to do a MRI to look at my eyes.. and after reading the material about what he feels I have it could be from my "seizures" which is from my inflammation in the Brain.. which is from my Tada... Sjogrens..............

So I am really having a hard day seeing how my Good Lord could take my eye sight.. I was really thinking most of this would all go away when this flair calmed down some.. Whats really bad is I only need reading glasses.. but my eye sight is shrinking..

OK.. so I boo hoo'ed enough.. let you all know how tomorrow goes.. Praying no Optic Neuritis is found..

Blessings.. Keri
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Meld256 on September 06, 2011, 11:32:08 PM
Dear Keri,

Good Lord, the hits just keep on coming for you, don't they?  I am so glad you were seen by an eye specialist, but somewhat surprised (as I guess YOU were) about the peripheral vision loss.  It sounds as if they were very thorough if you were there 1/2 the day.

Is your secondary exam tomorrow with the same specialist, or their group?  Please let us know the outcome of the appointment tomorrow.  I am sending you all the good thoughts and prayers I can.  ;)

I read more about Optic Neuritis and what I saw from the MayoClinic website was that it can be treated with steroids and other medications.  Most people can regain their vision after several months-a year of treatment.  This may be hard to think about right now, but maybe it is a blessing that a problem was found now before it worsened.   Perhaps this has been the cause of your migraines. 
I'm sorry, but I must ask; did you have an eye exam before starting Plaquenil? Your doc should have let you know how important that is to have a base-line exam. 

Ok, sending positive vibes and hugs.  Let us know all about what happens.  Blessings to you, dear.
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: quilt4fun on September 07, 2011, 08:18:38 AM
   I will be praying for you!  Our eyes are so important.  It sounds like you have a good, thorough doctor to work with.
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Nat on September 07, 2011, 08:50:30 AM
Keri-I am so sorry about your vision. It does sound like you are getting good care. I am hoping for the very best outcome for you. Some of the things you stated in your post I believe are clues as to what is happening though. I am pretty computer illiterate so this may be a bit of a piecemeal approach. I think I saw in your profile you are low on D and B vitamins. That is very common in Sjogrens and in all of autoimmune diseases in fact. I have posted studies to show that Sjogren's patients lack B12. The problem is in the metabolism of B12, not in the amount consumed in either supplement or natural form. B12 is only found attached to dietary animal proteins. If you are unable to break them down, you would lack B12. The absorption of B12 is dependent on the presence of appropriate pancreatic enzymes. (I will post a study) You say you are having seizures. Seizures are connected to lack of B12. So is vision loss. Migraines are also. Here are the titles to various studies that show the connection to seizures and lack of B12. You can access them all online.

"Recurrent seizures: An unusual manifestation of vitamin B12 deficiency" from Neurol India a peer reviewed biomedical periodical of Neurological Society of India.

"Vitamin B12 deficiency and Seizures" from PubMed

"Neuropathy caused by B12 deficiency in a patient with ileal tuberculosis" Here is the intro to the study." Vitamin B12 deficiency can result in macrocytic ANEMIA. Nerologic abnormalities of B12 deficiency include sensory deficits, loss of deep tendon reflexes, movement disorders, neuropsychiatric changes and SEIZURES."

"Neurologic findings of nutritional vitamin B12 deficiency in Children" from " Seizures and tremor were observed in 46.6% of patients

Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Joe S. on September 07, 2011, 09:23:08 AM
Could this be a side effect of Plaq?
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Skylar on September 07, 2011, 09:30:41 AM
Could this be a side effect of Plaq?
I was thinking the same thing as Joe S. I'm tested every 6 months for peripheral vision loss.

I'm so sorry you have to deal with this and I hope some if not all can be reversed. Thank goodness you are seeing an eye specialist. I'm sending you healing vibes.
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: irish on September 07, 2011, 10:03:51 AM
I am so sorry about these issues with your eyes. I hope that they get you on some prednison or something to help halt the autoimmune attack on your system.

Is it possible that IV steroids and IVIG (gamma globulin) could help lower the inflammation in your brain. Sure seems like something should be used to lower the antibodies in your system.

This is really something and unbelievable how it presented itself. This sjogrens is not just "dry eyes and dry mouth" and the sooner the medical community figures this out the better. I will keep you in my prayers. Irish ;D
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Nat on September 07, 2011, 10:12:28 AM
Kari, here is some info on homocysteine and damage to the eyes. I will provide additional studies on the direct relationship homocysteine has to eye damage. The most accurate test for a B12 deficiency is elevated levels of homocysteine. It destroys the endolithial cells. (The cells that line the blood vessels in the eyes) It is such a powerful destructive force, that elevated levels are 40 times more predictive of heart disease than cholesterol.  I know plaq could also play a role,  but with the other symptoms you are exhibiting, I would also consider the inability to metabolize B12.

"People with autoimmune disease often experience vision complications. Just as blood vessels leading to and from the heart and brain can be adversely affected by homocysteine, so can other blood vessels in the body. Central retinal vein occlusion (CRVO), central retinal artery occlusion (CRAO), and nonarteritic anterior ischemic optic neuropathy (NAION), are three eye conditions associated with elevated homocysteine. All three are serious conditions that can lead to vision loss. Ischemic CRVO, which usually occurs in one eye only, leads to all sorts of complications, including neovascular glaucoma and macular degeneration.

Referring to images of a fragmented 10-layer retina exposed to high levels of homocysteine, Dr. Sylvia Smith, cell biologist at the Medical College of Georgia, states in an article from Medical News Today, ?You don?t have to be a cell biologist to see there is a problem in this retina. It?s terribly disrupted. A healthy retina-tissue at the back of the eye that receives light and transforms it to a neural impulse that goes to the brain is beautifully organized, horizontally and vertically.?

Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Nat on September 07, 2011, 10:26:55 AM
This study states, "Patients with both exudative and dry types of AMD had significantly higher plasma homocysteine levels." It concludes, " This study suggests an association between elevated plasma homocysteine and AMD regardless of subtype."
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Nat on September 07, 2011, 10:43:57 AM
OK, this post should wrap it up. The following study shows that Cobalamin (B12) is dependent on pancreatic enzymes. it states, " In vivo studies demonstrate that the pancreatic enzymes and the ionic environment in the upper gastrointestinal tract are essential determining factors for transport and absorption of cobalamin in man."

In Headache: The Journal of Head and Face Pain, author Cris Constantinescu M.D.,Ph.D., states, "Migraine and Raynaud phenomenon often coexist and may reflect similar vascular reactions. Both have been associated with vascular ENDOTHELIAL cell dysfunction. I have posted studies that show Raynauds is linked to elevated levels of homocysteine.

The inability to metabolize Vitamin D is also connected to the inability to digest dietary proteins. In order to carry PROTEIN BOUND calcium, which is necessary for Vitamin D metabolism, you would need to be able to digest dietary proteins.
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: 12lovehim on September 07, 2011, 11:13:56 AM
Hi All... Quick answer to some questions before I take off to the MRI.. I guess the Peripheral Vision loss is outside the "norm" for the plaq. So his feeling is also macular degeneration starting. There was a pretty good "brain contusion" in 96 while serving in the Army. I was out of commission for almost 2 months. I suffered horrid migraines for a good year. Then all was well, till 2004. Funny the things you dismiss when you were young.

My base line in March was fine, I guess I excepted the "ocular migraine" DX in march to easily. In addition, Different Dr's put me on Plaq, then took me off, then on, then off... So I have only been on plaq for 2mo straight in the last 8 mo. So Dr felt that I hardly had a strong enough therapeutic dose in my system. (whatever) :-\     

I have been getting Vit B shots, but I do have issues with digestion and vitamin absorbsion, and only tested + once for celiac. So they told me I was just glutten sensitive not celiac +. So Dr said increase my flax, omega, & E intake. ( and look for a good K supplement) I have issues with taking the omega's because they really mess with my gallbladder. But gallbladder can come out, eyes need to stay..

(Additonal question to those who might have had this happen... Sunday they sent me to the clinic for an advanced EEG.. To induce seizures.. After a series of flashing lights, crazy sounds I swear the jerking stayed with me for 24 hrs and Whoa did I start to flair. Wondering if the forced seizures testing, precipitating migraine messed with the eye test)  I hate brain fog, usually my hubby goes to apts with me.. (good thing he didn't yesterday it was so long..) And I forgot to inform the Dr about it yesterday... I see the same Dr after my MRI today..

Ok.. enough about me.. I just bless ya all today.. Thanks for being here for me... I was just " :o Freaked Out  :o  Yesterday, Ugg another day of "REally What Else"....

Love Ya all.. Keri
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Nat on September 07, 2011, 12:48:24 PM
I don't blame you for being freaked out. I would be too. I just wanted to add that taking B12 in supplement form would most likely not correct these problems.  In the following study on another autoimmune disease, Multiple Sclerosis, it  states, " There is a SIGNIFICANT ASSOCIATION  between MS and DISTURBED VITAMIN 12 METABOLISM. The problem is in the metabolism of B12, not in the amount consumed either in supplement or natural form.

Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: GeorgiaGirl on September 07, 2011, 03:18:07 PM
I am so sorry you're dealing will all of this.  Freaked out?  :o My gosh, yes, I don't blame you.  From way over here, on the other side of the computer, it freaks me out!  It sounds like they are taking things seriously.  I hope you get answers & good treatment options soon.  Keep us posted!
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: Daisy1234 on September 07, 2011, 04:02:31 PM

Am so very sorry to hear you are experiencing such a horrendous impact from Sjs.  Sending my best positive thoughts that your MRI today went well and that a good and solid plan of action for regaining your vision is undertaken as soon as the results are known. 

Please let us know what happens as you travel this difficult journey.
We are all in your corner.
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: 12lovehim on September 07, 2011, 08:04:05 PM
Hello My Group... Well lets start with the good news.. I got my Restasis..  ;D..................

So after some more extensive blinding tests and a MRI that must now be done with Contrast.. ( so new MRI in the next few days) It is very hard to lay that still for so long on something so uncomfortable.  :'(

Now for the rest of the story... Can you say Pituitary... As to what is wrong with or attached to.. Needs a contrasting MRI/MRA... So as explained to me.. Our Pituitary Gland sits in the middle of our sinus and Ocular nerves.  As persay a tumor or inflammation develops within the Pituitary and swelling causes the pituitary gland to press upon both the Sinus and Ocular nerves you may experience consistant headaches and wait for it................ Loss of peripheral vision... If it is a tumor they will remove it and with any luck we have not caused permant vision loss......... if it is anything else... more medication and trial and error to remove the swelling... and there will be no promises that I will see properly again.. but there are some lenses that can help modify my vision if it comes to that.. (oh how I wish I had better vision insurance.. )

There is a really good chance that just as Sjogrens has attacked my thyroid, it hit my Pituitary first.. Most pituitary tumors are noncancerous.. So another bit of good luck....

Oh how I miss me more and more each day.. Many of you didn't know but I had started school in January for multimedia.. I had taken many photography courses.. So my new passion had been taking pictures and making my own greeting cards... Editing photos via my computer was the only "I'm doing something with my self" I had going.. Uggg.. the fact that those little black spots on the corner of my eyes could get worse... I'm not sure it's another blow to my heart I can take without needing to add an antidepressant to my arsenal..

OK.. so I know we don't always go to the good place with bad news.. because we have learned better.. So I have been a woman of internal vision for a long time.. I have seen so many people beat odds.. and this is not any desire I have within my heart.. So I will not except any permant vision loss..

So I need to go goggle some pituitary information and see if I can find a sjogrens link...

Love and Blessings.. Keri

Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: 12lovehim on September 07, 2011, 08:16:29 PM
OK.. had to modify this post.. Can anyone say Addison's Disease... and I just read a study linking Sjogrens and Addisons... Where the side effects and tests for Sjogrens will come up POS first...  Had a sliver of hope for a brief second..

blessings.. Keri
Title: Re: Peripheral Vision Loss... I am so bummed..
Post by: irish on September 07, 2011, 08:31:25 PM
Boy, This has certainly been a heck of a week for you. This is sure proof that if you worried about just the one thing it would be a waste of your time and energy.

You have so many things going on right now that you just need to try and "cool" your jets for a while. My gosh, it has gone from one thing to another----and these things are BIG things.

I will keep you in my prayers---don't hardly know where to start with it cause it has gotten so complicated. It does sound like you need to be on a gluten free diet though. Please keep us updated and hang in there. We are all sitting on the sidelines cheering you on. Irish ;D