Going Blind - Anyone else had problems with their optic nerve?

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 11/5/2007 11:35 AM (GMT -7)   
  eyes Well, my week of denial is over so I now have to face the inevitable.  Saw the optomotrist last week and was told that half my left eye went completely blind and half my right eye was almost blind.  Says it is progressive and not expect it to come back.  Also said he thinks it is the optic nerve.  I need to go to a opthoneurologist for the cause of my blindness.  I wasn't too sure what to make about the doctor's comment that he only seen this problem with MS.  I explained I had lupus, and he said maybe I had lupus and MS.  Well, I do have the CNS lupus so I guess that is similar to having both.  I never heard of having MS and lupus.  I also never heard of going blind from lupus. 
 
Is sclerosis of the optic nerve normal for lupus?  I also have sclerosis of the mitral valve.  Sclerosis here and sclerosis there.  It is getting to be a common theme these days. 
 
Has anyone had any relative experience with this or with going blind?  I don't know anyone blind so I am clueless when it comes to this health aspect.
 
As always, any help/thoughts are appreciated.  Thanks - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 11/5/2007 1:39 PM (GMT -7)   
Oh Kristin, this is such terrible news.  Still, I think you should not give up yet on your vision.  An ophthalmologist may be able to work wonders.  I've also read that lupus can cause temporary blindness.  I have CNS problems too (seeing my neuro tomorrow), but nothing as serious as yours.  I'll keep you in my prayers and I'm sending you lots of positive energy.  Please let us know what the ophthalmologist says.  Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 11/5/2007 1:57 PM (GMT -7)   
Thanks Butterflake - Afraid it is permanent, been losing vision for 2 years now and progressing - none of it has come back yet unfortunately. Still, I hope they can stop the progression somehow. I won't ever give up hope, just may need to readjust as usual. Need all the positives I can get out of life and appreciate your kind energy - Hugs - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 11/5/2007 2:06 PM (GMT -7)   
Hi Kristin.  Have you tried contacting any organizations for blindness?  Maybe they can get you set up with a sound activated computer (I don't know what they're called).  Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 11/5/2007 4:42 PM (GMT -7)   
So sorry for yourf news it must be devastating.
 
On another note to any who read this post.  I was told it is very important to have regular check ups to make sure any autoammune disease is not affecting our vision.  Inflamation can cause many side affects in the body.
 
my thoughts and prayers go out to you
Sharon
My daughter Sarah just had a check up last week and everthing is good.
Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/5/2007 4:54 PM (GMT -7)   
Kristin, I'm sorry to hear that this is happening.  I hope you can get some answers as to the cause.  I'm not really familiar with eye related stuff and lupus. I wish I could offer more help to you.
 
You're in my thoughts and prayers,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/5/2007 7:38 PM (GMT -7)   
Kristin--
I'm so so so sorry this is happening to you. I hate to say this, but could there be any way they misdiagnosed you and you have MS and not lupus? They are kind of similar in a way, both being autoimmune diseases and usually MS affects the eyes first but not always. Have you been checked for all the other neuro diseases like Myasthenia gravis and the rest, whatever they all are? My eyesight was always so bad as a kid that iin a way I was blind most of my life. I fear my vision is failing but tell myself it is just a result of my eye surgery, I had vision correction surgery. My mother is blind in one eye and can't see out of the other, really! She has been blind in one eye since she was a young woman, they said the shape of the eye caused it. Then she has less than perfect vision in the other eye. I will check out the web and see what I can find. They are doing some pretty impressive things with new medicines for MS so perhaps by diagnosing and treating this new condition, whatever it is, they can slow the progression of the eye loss. My sister has some kind of eye disease and she will eventually be blind but she will be like 70 so that's not so so bad, I mean its bad at any age, but at 70 you kind of expect to have some problems. I think she got it when she was doing veterinary work from the animals. She has tunnel vision now, which is what I have sort of. I am so sorry Kristin and I'm sending you lots of (((hugs))) and good wishes that you will get this diagnosed and treated and they can slow or stop this in its tracks. Also, you should make sure that you get two good opinions from good eye docs because maybe there is a chance that the damage was misinterpreted, and you want be sure that they diagnose it right. I just have been having a hard time trusting anyone lately. I'm so so sorry to learn of this, you did not need this and I will keep you in my thoughts and prayers. I've missed you, I haven't been out a whole lot due to problems with my son and my own state of mind. You did not deserve this Kristin and I wish I could make it go away. I'm so sorry.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/6/2007 10:53 AM (GMT -7)   
Kristin,

Wow, you're in a scary situation! I'm so sorry! I do hope you find a competent opthalmologist and even then I'd go for a second opinion. I know you'll do everything you can to save what eyesight you have left. Please let us know how things go. Sending lots of healing energy your way.

Love,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 11/6/2007 2:37 PM (GMT -7)   
Thanks everyone for your kind words and assistance. I was checked for every neuro disease imaginable including MS and MG for years. Couldn't find anything until it started on the organs. After pericarditis, blood clots, dementia, hypothyroid (Hashimotos), etc. set in at the same time, they finally tested me for Lupus, I had a couple of positive results and I was diagnosed with it. Lupus also runs in the family. I am wondering if the mild scleroderma symptoms I had a couple of years ago aren't connected to the recent sclerosis of the mitral valve and the blindness. Whatever it is, it is having a field day. Love you all - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/6/2007 3:35 PM (GMT -7)   
Kristin,
 
So sorry you are having such an awful time.  I would press and get another opinion on something so drastic.  My son went to an opthalmic specialist when he suspected ms.
 
Lupus and MS are both AI diseases and can affect vision.  Of course, one of the early symptoms of MS is problems with vision usually in 1 eye I believe.  My exwife's family has had 2 cases of MS in her generation (her brother and 1st cousin) and my oldest son thought he might be getting it.  After several tests they concluded that he was OK.
 
It is my understanding that lupus commonly causes vision problems blindness is a rare condition.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/6/2007 4:00 PM (GMT -7)   
Kristen, I can't offer much help for you, I just wanted to let you know that I'm really sorry you are going through this. I can't imagine what you must be going through. You are in my thoughts. Lots of ((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/6/2007 8:01 PM (GMT -7)   
Hi Kris:

I just wanted to say I'm sorry to hear this about your eyesight. You'll be in my prayers and I'll be thinking of you. I know it's got to be so upsetting to know that you're loosing your eye sight. I just don't know what to say that will help. I'm just here for you if you need me. Please take care of yourself and let us know how you're doing.

Best Wishes,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 11/11/2007 6:33 PM (GMT -7)   
Hi, Kristin. I'm SO sorry you're dealing with these vision problems. I had my third nerve damaged in a bad car wreck in 1994, so the vision I do still have in my left eye is so bad its' not even measurable. I know there is a lot of technology out there for eyes today. Please don't risk what you do have left and definitely go for that second opinion. Your eye-sight is SO valuable! Good luck,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp

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