[Rose Maclean]

Hi Everyone,

I am not sure how many of you saw my post about my worry about my rapidly deteriorating vision. This started about 3 years ago and I got glasses and this year has become bad enough that I went to an optician to get new glasses. The optician was very confused as she said she couldn't give me a prescription which gave me clear vision, even though i went back several times, because each time she tested me, I had different levels of blurring/doubling. We discussed my meds, but I am on a low dose of both pred and plaq and have only been on them for 2 months. She referred me to an opthalmologist saying that perhaps there was a degeneration of the connective tissue in my eye and I might be going blind. This scared the c**p out of me! I saw the opthalmologist on Friday. To my relief, he found absolutely nothing, but could not explain why I can't see! I left feeling very despondent. The sort of shoulder shrugging he gave me with a revisit of blaming the meds, (even though he had also ruled them out because of length of time on them and also the fact that this vision problem predates any lupus treatments starting right at the beginning of the consult) is the kind of behaviour from doctors that drives me wild!

Anyway, I'll get to the point. Over the weekend my husband and I talked about it a lot and experimented with standard reading glasses and noticed the blurring/doubling was still there. So we wondered, if the opthalmologist was competant and the optician was competant, then there is very little wrong with my eyes, so what is causing the disturbance? We eventually worked it out. I have an essential tremor which has also deteriorated dramatically over the last 3 years, and guess what? It makes my head shake too! How do you see clearly when your head is trembling? When the tremor is worse, my eyesight is worse! The two of us roared with laughter when we worked that out, but an optician and an opthalmologist could not think far enough out of the box to think of this! And my tremor is bad enough (all my extremities shake violently) that the opthlmologist even questioned me about it!

I hope this story cheers all of you up. It just goes to show that sometimes the problem is just not that complicated. I will go back to the optician and get the best prescription for multifocals she can give me and live with my differing visual acuity!

Hugs to all

Rose

 

[Pink Pearl]

Hi Rose,
Have you seen a neurologist, or better yet, a neuro-opthalmologist? My reason for asking, when I was dealing with the 4 1/2 mo long migraine I had, I also experienced blurred vision, double vision, and tremors. What was determined was that I was having ocular migraines. They don't hurt the way a "normal" [if any migraine can be normal] migraine does, but cause blurred vision with or without tremors. That is how I was able to determine what was happening. One eye would see normally, and the other was nearly gone with blurred vision that would not clear up. If I did an injection of DHE-45 or toradol, then it would usually clear up.

I also had a battle with double vision for quite a while. Again, it finally wore itself out...don't remember us doing anything specific to deal with it. The ocular migraines have been well controlled with the maintenance meds I take and I haven't had one for a few years now.

I wish you well in dealing with providers who don't understand sle very well, if at all.
Sally

 

[onetay]

Rose,
In a way this is good news but in another it is bad. You should talk with your gp, dermy, or rhuemy about your findings and they can hook you up with some help and maybe get the vision under control for the most part. I would say that the eye doctors are uncomfortable in this area but should have referred you to some more help I would say or at least asked for your permission to contact your gp. You will find that most doctors dealing with the eyes know very little more than that the eyes. Connecting the dots seems like an easy thing but sometimes the picture turns out wrong and you have to start over again. I think it is wonderful that you and your hubby figured it out and that you had a good laugh. I would follow up with the nuery and see what they can do to help you as this is their area of speciality.
Wishing you the best with some help. I did read your post earlier and am glad that it is not your eyes as you would miss all the beauty in the world without them. Hope to hear another up date from you soon on what the neuro found out for you.

 

[Rose Maclean]

Thanks for the suggestions, ladies. I am not sure that a neuro-opthalmologist exists in sa, but my GP is fantastic and I have decided i must follow up on this tremor because I have simply accepted it all my life (my father had it too) and now it is getting really bad, and interferring with my life. The up side of having no public health in SA is that getting to see someone good is not a problem, but my gp is someone who's opinion i rely on heavily. he is an incredibly concerned and involved doctor. i only wish there were more like him.

I will keep you posted. and thanks again. Oh, and I have ordered my multifocals! Yippee!

hugs Rose

 

[lazylegs]

Hi Rose,

Essential tremors can be hereditary, but not always. You should definitely see a neurologist to sort this out. There are medications that may help lessen the problem.

I understand how frustrating these tremors can be. I wish you luck.

Take care,
Lazylegs