Worsening diplopia with no explanation

Posted by beka @beka, Mar 11, 2019

Hi! I’m new here. My name is Beka. I’m 43 years old, and I live near Atlanta Georgia. I’ve cross-posted this since we’re still not sure what’s going on.

My journey started 20 years ago when I was diagnosed with Crohn’s. That and a couple of other little things like psoriasis and migraines. (It’s still weird to lump Crohn’s and migraines in as “little” things.)

However, in the last 5 years, I’ve had a cascade of issues that has led to a laundry list of diagnoses that are autoimmune or related conditions. Among these are Rheumatoid Arthritis, Reynaud’s, CFIDS, Fibromyalgia, etc. Many of my issues are still unexplained. One of the most annoying, concerning to me is, in a nutshell, bilateral monocular vertical diplopia. That is, double vision where the ghost images are above and below the actual thing, it’s still present when one eye is closed, and both eyes are affected. This problem is getting worse as time goes by.

I’ve seen several ophthalmologists, a neuro-ophthalmologist, and a retina specialist since I am taking Plaquenil for my RA. The Plaquenil use was ruled out as the issue. The only thing (that I am aware of) that they were not able to rule out was another autoimmune disease.

Several of my doctors have expressed concerns about MS, but 3 brain MRIs in the last 5 years have not shown any lesions. Myasthenia Gravis is another potential, but my primary is unable to order the antibody tests, and I fired my rheumatologist for being a total jerk. I am in the process of finding a new one, but it’s difficult to find a doctor that is willing to take input from the patient or another doctor (in my experience).

So, to stop my post from getting any longer, has anyone experienced this type of diplopia? Or does anyone have MG with ocular problems that sounds like this? Are there any other conditions that should be considered?

Any help would be greatly appreciated.

@Erinmfs

oh thank you, you have brightened my day. my diploia ebbs and flows. Sometimes it really flares, sometimes my right eye droops shut completely. My diplopia really flared in November, but it has improved slightly. Thank you, you have said all the right things today! I don't know what glaucoma is like, I'm sorry to hear that you are dealing with that.

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Wouldn't it be fun to sit down and have that glass of wine together?!!! Between the two of us, we could probably figure out which glass is real – LOL!!!

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I'd like to join ashby1947 and Erinmfs for that glass of wine, or two or how many we see. Sure makes life interessting, eh? I never know when the dilopia will appear. I think it's worse when I'm tired, definitely when I get up too early and my body isn't ready to start the effort or moving around. Those early Mayo appts are tough for me. Kills the entire day, exhausted to a point of almost unable to function. And, takes a day or two to recoup. I was diagnosed with MG years ago, after that neurologist decided I didn't have MS. I had several IV treatments that did help, but then testing didn't support the diagnosis. So, back he went to MS. The sight issues have never been accurately diagnosed. I see the Mayo neuro opthomologis in 2 weeks….can't wait as I'm really praying for some answers. and some suggestions for help. I drive ok, but if I begin to see double, blurred and whatever, it does help to close one eye, usually the left as it's easier to keep closed while driving. I don't start out with the problems, tho. I'll not drive not seeing well, but if it hits while driving……Sue, I think you mentioned you have some glasses that help? I expect to go that route if he recommends. These sight problems tire me physically. It's work to see and very frustrating, isn't it? BTW: MGMolly, for several years I couldn't see well with either eye because my lids were drooping so badly. There were time last year I was looking through little slits to see. What a hoot that was! If that's part of your problem, here was my solution. Mayo Opthomology Surgeon tightened the lid muscles so they actually work properly, I can open my eyes all the way and they weill stay open. Makes a big diff in ability to see! Ck it out. It was easy, simple surgery, worked perfectly, took several weeks to heal completely, and I had to pay a portion of the cost since it can be beneficial as plastic surgery. Yes, I see….AND I have no loose skin or wrinkles….looks good, as a side effect. I'll let you know what the tests show in couple weeks. Merry Christmas to all and special Christmas blessings. Elzabeth

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@ess77

I'd like to join ashby1947 and Erinmfs for that glass of wine, or two or how many we see. Sure makes life interessting, eh? I never know when the dilopia will appear. I think it's worse when I'm tired, definitely when I get up too early and my body isn't ready to start the effort or moving around. Those early Mayo appts are tough for me. Kills the entire day, exhausted to a point of almost unable to function. And, takes a day or two to recoup. I was diagnosed with MG years ago, after that neurologist decided I didn't have MS. I had several IV treatments that did help, but then testing didn't support the diagnosis. So, back he went to MS. The sight issues have never been accurately diagnosed. I see the Mayo neuro opthomologis in 2 weeks….can't wait as I'm really praying for some answers. and some suggestions for help. I drive ok, but if I begin to see double, blurred and whatever, it does help to close one eye, usually the left as it's easier to keep closed while driving. I don't start out with the problems, tho. I'll not drive not seeing well, but if it hits while driving……Sue, I think you mentioned you have some glasses that help? I expect to go that route if he recommends. These sight problems tire me physically. It's work to see and very frustrating, isn't it? BTW: MGMolly, for several years I couldn't see well with either eye because my lids were drooping so badly. There were time last year I was looking through little slits to see. What a hoot that was! If that's part of your problem, here was my solution. Mayo Opthomology Surgeon tightened the lid muscles so they actually work properly, I can open my eyes all the way and they weill stay open. Makes a big diff in ability to see! Ck it out. It was easy, simple surgery, worked perfectly, took several weeks to heal completely, and I had to pay a portion of the cost since it can be beneficial as plastic surgery. Yes, I see….AND I have no loose skin or wrinkles….looks good, as a side effect. I'll let you know what the tests show in couple weeks. Merry Christmas to all and special Christmas blessings. Elzabeth

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hey, thank you for sharing, a fellow MG here on Christmas! I had a minor car incident, I gave up driving. I tried the 'one eye'd driving, but it scared me. I just suck it up and call and uber. Let's get together and have a glass of wine this week, we can count and figure out how many we actually have! 🙂 I always get 2 for the price of one, like in that photo, that's how I see on the left-hand side.

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@Erinmfs

Hi,

I was just telling someone of my diplopia issues and thought I'd share my situation here on Connect. I see like this, that double wine glass, with my left eye.. I gave up driving. I'm so frustrated with my vision today!

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Hi @Erinmfs I have diplopia but a prism does not offer help for me. It should help you if your diplopia is the image in your photo. Best wishes. Toni

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Hi, @beka. You sound a lot like me, and I strongly suspect you have some of the same stuff I have, because you have a lot of the same symptoms. With this stuff, one cannot always tell because every person has their own variation of genetic issues. But maybe I can help. I struggled with my stuff for 76 years before I finally began to get a handle on it. I have the up-and-down double vision as you. And splitting nails. and cracking teeth, and areas of skin issues, and enlarged organs all over me; heart, lungs, kidneys, liver, lymphs, tongue, cerebrum, etc. Universal Organomegaly. Many cancers, including on the larynx, melanomas, and failing organs removed surgically: Appendix, thyroid, tonsils. And both central and obstructive sleep apnea. And I missed a lot of school, and did not participate in athletics until a sophomore in high school. But then I played, coached, officiated, and have supported football now for 65 years. And so on. So here is what I have found. There is a family of disease within the cancer field. There is Myeloma. Within that there is Amyloidosis. Then within that there is both TTR and non-TTR Gelsolin, or Finnish Amyloidosis, and a number of mutations off that. The gene name is GSN, Gelsolin. It is systemic (hits everything), can be fatal, often hits the heart and brain heaviest, always shows up in the eyes. The eyes get blepharopathy, or blepharochalaisis. (same thing) Anyway, the blepharo collects protein fibrils around the nose, builds up some visible or not visible growth. This, then, pushes on the eyeball, distorts the shape of the cornea, and causes the up and down double vision. This is also the cause apparently, of lattice corneal dystrophy. But I also have some other genes which cause trouble. Fukutin Limb Girdle Muscular Dystrophy, c2, or m4, or such. FLGMD. This seems to be a very early mutation off the GSN. My birth doctor knew I had some problem almost immediately after birth. I have fought these many years. And there are other genetic issues. And there are about 50 family in my boood line that have the same issues, ranging from simple multiple myeloma to LECT2, Apolipoprotein, and others, clear to my GSN. What do I tell you to do? Get a COMPLETE gene sequencing from Apollo, or Sequencing.com, or one of the others. It costs about $400, but is a real bargain at that price. I also have the genes for Ankylosing Spondilitis, loss of white matter in the cerebrum, both rheumatoid and psoriatic arthritis, So that is what I suspect you have, but you will not know until you have the genetic sequencing, the TOTAL job, done. God Bless. You will need all the help you can get.

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@oldkarl

Hi, @beka. You sound a lot like me, and I strongly suspect you have some of the same stuff I have, because you have a lot of the same symptoms. With this stuff, one cannot always tell because every person has their own variation of genetic issues. But maybe I can help. I struggled with my stuff for 76 years before I finally began to get a handle on it. I have the up-and-down double vision as you. And splitting nails. and cracking teeth, and areas of skin issues, and enlarged organs all over me; heart, lungs, kidneys, liver, lymphs, tongue, cerebrum, etc. Universal Organomegaly. Many cancers, including on the larynx, melanomas, and failing organs removed surgically: Appendix, thyroid, tonsils. And both central and obstructive sleep apnea. And I missed a lot of school, and did not participate in athletics until a sophomore in high school. But then I played, coached, officiated, and have supported football now for 65 years. And so on. So here is what I have found. There is a family of disease within the cancer field. There is Myeloma. Within that there is Amyloidosis. Then within that there is both TTR and non-TTR Gelsolin, or Finnish Amyloidosis, and a number of mutations off that. The gene name is GSN, Gelsolin. It is systemic (hits everything), can be fatal, often hits the heart and brain heaviest, always shows up in the eyes. The eyes get blepharopathy, or blepharochalaisis. (same thing) Anyway, the blepharo collects protein fibrils around the nose, builds up some visible or not visible growth. This, then, pushes on the eyeball, distorts the shape of the cornea, and causes the up and down double vision. This is also the cause apparently, of lattice corneal dystrophy. But I also have some other genes which cause trouble. Fukutin Limb Girdle Muscular Dystrophy, c2, or m4, or such. FLGMD. This seems to be a very early mutation off the GSN. My birth doctor knew I had some problem almost immediately after birth. I have fought these many years. And there are other genetic issues. And there are about 50 family in my boood line that have the same issues, ranging from simple multiple myeloma to LECT2, Apolipoprotein, and others, clear to my GSN. What do I tell you to do? Get a COMPLETE gene sequencing from Apollo, or Sequencing.com, or one of the others. It costs about $400, but is a real bargain at that price. I also have the genes for Ankylosing Spondilitis, loss of white matter in the cerebrum, both rheumatoid and psoriatic arthritis, So that is what I suspect you have, but you will not know until you have the genetic sequencing, the TOTAL job, done. God Bless. You will need all the help you can get.

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@oldkarl So well written! Thank you for sharing.

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@oldcarl Wow that sounds terrible. I'm not going to complain about my minor aches and pains anymore.
How in the world do doctors treat you? There are so many ailments and overlapping symptoms. What exactly does the gene sequencing reveal other than normal/not normal? If a baby were born today with defective genes would they be able to correct it? I know they can detect some things in the womb.
Have you gleaned a good share of this information by your own research? There are so many incredible stories to share. Just maybe there will be answers to questions here and there.
Thank you

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@Erinmfs

hey, thank you for sharing, a fellow MG here on Christmas! I had a minor car incident, I gave up driving. I tried the 'one eye'd driving, but it scared me. I just suck it up and call and uber. Let's get together and have a glass of wine this week, we can count and figure out how many we actually have! 🙂 I always get 2 for the price of one, like in that photo, that's how I see on the left-hand side.

Jump to this post

Love it! I see that way with either eye, but only if both are open. Hope you ck out the surgery. It was so successful. I'd be blind now, unable to open my lids to see at all! What a pleasure to brush my teeth every morning and be able to see in the mirror, with both eyes open! God is good! Merry Christmas……….Elizabeth

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@mazeppabob

@oldcarl Wow that sounds terrible. I'm not going to complain about my minor aches and pains anymore.
How in the world do doctors treat you? There are so many ailments and overlapping symptoms. What exactly does the gene sequencing reveal other than normal/not normal? If a baby were born today with defective genes would they be able to correct it? I know they can detect some things in the womb.
Have you gleaned a good share of this information by your own research? There are so many incredible stories to share. Just maybe there will be answers to questions here and there.
Thank you

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@mazeppabob… Thanks for the kind words about my problems. You are so right about the ailments and overlapping symptoms. Few doctors now will even bother treating me with anything but palliative care. It seems most of them feel it is their duty to protect the disease from the efforts of the patient. About babies with genetic issues, yes very many can be researched as you say. But in 1939-40 in the poorest rural areas of Idaho, there was no help. Even if there had been, there would have been no cure, just the knowledge of what might help a little with pain, etc. Even today there is no cure for any of this, really. My recessive genetic issues might have been avoided by telling my parents not to have kids together. And most of this is based on the research of others, and reported by Mayo, NIH, Helsinki, MD Anderson, Johns Hopkins, Boston Amy, etc. In my book about it I try to give everyone credit, but that is difficult because everyone works with stuff provided by others. The only thing original about my knowledge is what I have experienced in my own life, such as the the diplopia and multiple cancers and sub-surface skin disorders. Doctors used to think I was nuts, until their own labs investigated and saw the reality. Even Mayo.

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@ess77

Love it! I see that way with either eye, but only if both are open. Hope you ck out the surgery. It was so successful. I'd be blind now, unable to open my lids to see at all! What a pleasure to brush my teeth every morning and be able to see in the mirror, with both eyes open! God is good! Merry Christmas……….Elizabeth

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I'm sorry to say that surgery isn't recommended for MG eye problems… I'm so glad surgery worked for you!

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Hi, MGMolly@Erinmfs! I may not have been clear in my discussion on the eye surgery I had related to diplopia. I didn't have it for the diplopia! That doesn't work. I couldn't see, even double, because my eyelids were so droopy, especially as I tired. By the end of the day, my left eye was pretty much closed. There were times I had my head tilted back looking through the slits where my eyelids were almost closed! It was getting really bad, very quickly. The surgeon at Mayo simply tightened the eyelid muscle on each eye so it would work properly, open so I could see. Double. Now I'm working on the double vision! With the neuro opthomologist. The surgery was great. A simple procedure basically. Just clipped the muscles and tighened and did some beaurtiful stiching. I still have tiny scars on each lid that may never go completely away, but it's ok cause no one can see them. Pain was nothing. Recovery took a couple of weeks for bruising and swelling so lids could open well. Now, I have my regular eyes back. Make sense now? You've really been to some good docs, it appears. Is there anything that can be done to help? Will the eye glasses help you at all? I'm putting together several gift bags and notes for my Mayo doctors and delivering tomorrow after I see the gastro doc. These are the last of the gifts – lemons off my 'cocktail tree' -lemon/key lime tree. I had a banner crop and gave as gifts to all the docs, staff, neighbors….if you were closer, I'd send you a couple. They're the size of a grapefruit, very sweer and wonderful. Off to bed. I'm tired. Blessings to you. Elizabeth

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