Vision Problems- Advice?

[jenglynn]

I know I recently saw a topic about this recently but couldn't find it- rather appropriate I guess because I can hardly see a thing I have always since a young child had very enlarged pupils- I never knew that it was unusual or an issue- the only reason I even noticed it was because hardly a day would go by when someone would not comment on how large they are. At various doctor appts. throughout childhood they would all comment on them but nothing more.

When I was at Mayo, the neuro commented on the large size of my pupils and the fact that my left pupil is "significantly" larger than the right. I should say that my pupils stay large no matter where I am but they do constrict appropriately if a light a doctor shines a light in them. I have always been near sighted and had a very hard time seeing at night and that has gotten worse as times has gone on. Over the last 3 weeks I have noticed the following symptoms, that are new:

- Frequent double vision- much worse as I am tired but happens most of the time. This is not just during syncope or pre-syncope spells. This will be even while I am lying down.

- Lots of "floating objects in front of my eyes- spots, shapes, bright colored objects, or any kind of strange shapes and objects that just "appear" in front of my eyes, ect that just appear. This also happens all day. There is no rhyme or reason.

- Very blurry vision- much worse than normal near sightedness

- Sometimes a strange version of regular double/triple vision, I will have strange double vision where I will see two or three of things but not side by side- more like all over the place, but they are actually the exact things that I am seeing... just seeing them in double or triple but in odd form. Maybe one on top, one on bottom and the other could be to off to the side.

-Chronic dry eye (I have had chronic dry eye and mouth for months) but the dry eye has gotten worse lately- it feels like my eyes are dry and gritty all the time and painful like I am tired, even when I am not sleepy.

Question... On Friday, I did report this via message to my Mayo neuro, but have not heard back from him yet- but should I see a opthamologist? Is there anything they can help with or is this is a purely autonomic/neurology problem? What does it mean to have chronically enlarged pupils and floating objects in front of my eyes? These are new and slightly scary symptoms to deal with. I felt when I brought up my visual concerns while inpatient at Mayo there was some sympathy but my concerns were never really addressed and I need to know if they need to be looked further at, or is this just one more thing we deal with and can't be helped? Any input??

Thanks for any help!!!! Especially for those of you going through this.... Appreciate any and all input!!!

Jen

[anna]

I do not recall do you have EDS?!

I get the double vision, when tired, (this has been put down to lens ligaments being over worked and wanting a rest due to EDS). I also get lots of interesting things floating in my field of vision, this might be of use: http://www.migraine-aura.org/content/e25968/e26078/e26305/index_en.html My problem has been put down to migraines and floaters due to normal eye debris, I have had the floaters ever since I can remember.

What I would say is that it needs a Dr. to look into it in more depth, I hope you can find a Dr. to sort this out for you soon.

[jenglynn]

Thanks Anna~

While I was inpatient at Mayo the genetic counselor said I met all of the criteria of EDS but she preferred to use the dx of "Connective Tissue Disease" because she doesn't like to "label" patients with EDS with Autonomic Dysfunction because Mayo doesn't tend to connect EDS with any kind of Autonomic issues. I am very hypermobile, very hyperextening joints, dislocated several joints on a regular basis, have had several ligament severed in my life, have very stretchy skin, can "pass" easily all of the "tests" that they give to determine EDS. Not sure if that answers your question because it sure doesn't answer mine. I asked her: "SO if I had NO autonomic issues, would you diagnose me with EDS?" She said she likely would but it is a "useless" DX especially in light of my more serious conditions. So, Anna, I guess I can't answer your question... but I think it is very likely that I DO have EDS but the only DX on my record is "Connective Dissue Disorder."

Thanks!!!

Jen

[Sif]

My eyesight has deteriorated quite rapidly over the last 6 months, it's gotten very blurry and suddenly I have to wear prescription glasses to see or read anything. My pupils are large too, I don't know how long they have been large for and only found about when a some doctors commented on them a couple of months ago. The problems with my eyesight showed up a good few months before my autonomic symptoms did but your post makes me wonder if they are related. I haven't been to an opthamologist though.. the only vision tests I've had are evoked potentials because my neurologist thought I had MS a few months before i got my POTS dx.

I'm sorry I couldn't offer any help but I'll follow your post in hope to glean some info from it too!

[jenglynn]

Oh, and she also said that she doesn't believe in diagnosing EDS while patients are undergoing testing for more serious conditions because it tends to "confuse" the issue and connective tissues have nothing to do with autonomic dysfunction. That made NO sense to me. Either I have it, or I don't???? I am sure there are other DX on my extensive list of problems that may not directly relate to my Auto Immune Disorder or Autonomic Dysfunction Neuropathy. There is not even any definite coorelation between the Immune Disorder and the Autonomic Failure. I kept questioning the hypermobility in relation to Autonomic Failure and every doctor just dismissed everything that I had to say/offer about that. They would not need even look at even research to see if there was a possibility given the hypermobility/connective tissue disorder/possible EDS... would they PLEASE consider it???? Another factor, my 13 year old daughter was also diagnosed with a connective tissue disorder at 12 months old- due to significant development delays (sitting, walking, etc) and continues to show symptoms and sign of this disorder- at 13 she has already had 5 syncopal episodes not due to needles, shots, blood, etc. It just seems TOO much of a coincidence to me to at least not look into.

Jen

[peregrine]

From what I've read (both on the dinet site about POTS/EDS and vision and elsewhere), it sounds like you should definitely get an opthamological exam ASAP for the double/triple vision if nothing else, since that can be a sign of more serious problems if nothing else. For me personally, the floaters and blurriness are symptoms of my dysautonomia being worse (and apparently dry eyes can be similar, though I don't get them), but the double vision is worrisome.

[anna]

Hi Jen seems that you do not fit neatly into the Mayo perfect POTS patient profile!!! I live in the UK but on my cyber journey around the world I have noticed that the USA has a number of hospitals that have become 'the" place to be re POTS and other ANS conditions, but it almost seems like they are all competing to back up their own theories as to why POTS exists! So it seems Mayo does not think POTS could be due to poor vascular tone due to EDS then!!!

On a slight change of topic I am a tad shocked that your geneticist did not want to look further into the EDS possibility, I realise you are having work ups for more concerning issues, but surely it makes more sense to assume that these problems are possibly linked in some way and work from there not the other way around!!

On the UK EDS site there are a number of members with EDS and Primary immune deficiency!!

[anna]

Oh also you may want to look at: http://www.ncbi.nlm.nih.gov/books/NBK1474/ my son's Dr. is screening them for this as my husbands father had some form of fatal Autonomic failure!! (he had many VEDS traits) To add to this my maternal grand father died from what was diagnosed at the time as Parkison's disease related complications. Sorry but I think Mayo is being a little silly if it does not feel the need to look further into EDS issues.

[sandymbme]

I can't believe they don't feel EDS is very serious! Especially when there is some pretty darn good evidence that says in has a causal relationship to POTS! I have both, and a few other things as well, but my EDS probably causes me the most complications, the most pain, and impacts my life the most. Especially since it can be degenerative to a lesser or greater degree. In me, my EDS, POTS, celiac disease, and osteoporosis are all interwoven in a vicious little circle and exacerbate each other in all sorts of unpleasant ways. I would strongly encourage you to seek out a second opinion.

PS...This journey of trying to find the best diagnosis and gain the clearest understanding can be fraught with frustration. I will be keeping you in my prayers, and in the meantime, I highly recommend Dr. Brad Tinkle, PhD's book, "The Hypermobility Handbook". It is written for patients, so very straightforward to read, and chock full of all sorts of good infore to help you take the best care of your self possible.

Sandy

Sandy

[jenglynn]

I was very upset by the way they dismissed my fears about EDS.. especially when BOTH my daughter (13) and I have both been diagnosed with unspecified "connective tissue disease"- her at 12 months old me just recently at Mayo. Just from my own testing at home with her, she meets all of the joint criteria. So did I at Mayo. Some other factors I brought up: (for myself)

*VERY hypermobile/hyerextendable joints- when I was 13 I slightly twisted my leg and completely severed ALL four ligaments in my left knee (took 8 surgeries to fix!!) I also currently have 3 torn ligaments in the other knee. Both of these knees have dislocated numerous times. My shoulders have both dislocated. Elbow once.

* Bruise easily/ soft kind of white skin- even the genetic doctor commented on how "velvety" smooth my skin was... "Why thank you, my dear "

*I have ALWAYS had severe pain in my joints and my body in general. I don't ever remember not being in pain. In fact, when the doctor asked me to tell her the last time I was pain free and healthy... I honestly couldn't remember. How sad is that? I don't think I EVER have been. Even as a young kid, I remember my whole body just aching.

*Lots of fatigue and just lots of feeling tired. For as long as I can remember

*I have really stretchy skin- you can pull it pretty far

* Vision problems which have gotten much worse lately- original topic for thread actually

*13 year dx with Connective Tissue Disorder at 12 months- late sitter and walker- since age 11 has had 5 syncope spells

*Early arthritis

*Small fiber neuropathy

These are not all of the symptoms I have... but the ones that I can think of off the top of my head. I have a feeling it IS EDS, especially with my autonomic issues when OTHER major medical centers will connect the two disorders together. I have a daughter with very similar symptoms who is already having severe fatigue, muscle fatigue and syncope at 13 years old. I was so frustrated to be just dismissed as silly by Mayo by not recognizing the connection. I even had one of the doctors check the stability of my joints and while he was checking my knees he actually dislocated it. I tried to explain the connection between joints, collagen, ligaments (which I have had MANY torn in my life) and vessels/veins. Not to mention my paternal grandmother and great grandfather BOTH died of a burst blood vessel in their brains.

I guess I somehow got off the subject of eyesight, but it sounds like there may be a consensus that IF I did have EDS or a "Connective Tissue Disease" it could affect my eyesight because so much of the eye is made of collagen.

Thank you all so much for the insight!!!

Jen