Discussions By Condition: I cannot get a diagnosis.

Sudden onset Blindness

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: KariMac
  • April 9, 2009
  • 05:10 PM

I made a lengthy post last night around 7:30 pm central time on my husbands condition, and it has not shown up. I can't find a way to contact a moderator to find out what happened. can someone help? Do I just need to start over?

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11 Replies:

  • I made a lengthy post last night around 7:30 pm central time on my husbands condition, and it has not shown up. I can't find a way to contact a moderator to find out what happened. can someone help? Do I just need to start over?Hi KariMac,Probably best if you re-post.Best regards,John
    JonMac 165 Replies Flag this Response
  • I tried a repost about 2 hours ago and it still has not shown up. Any ways maybe I will just start the post now. About 10 years ago, my husband lost his sight. His eyes just turned off. It was an instant thing. Not progressive. At that point he started having migraine headaches, numbness in left arm and leg (which only ended about 1 year ago) body aches, weakness, weightloss, memory problems. The headaches and body aches kept him in bed for over a year. After going to every specialist we could find for over a year on a weekly basis, all they could diagnose was optic neuropathy. He has started getting chest pains over the last few weeks, and his blood pressure is very low (99/57) since the onset of the blindness he has lost alot of weight about 20 lbs of it has been in the past three months. He was 230 now he is 158. Any Ideas would help. All the research I have done says the closest thing I can find is multiple sclerosis. That is the thing that fits most of the symptoms.
    KariMac 7 Replies Flag this Response
  • tried that about 2 hours ago. Still nothing. Any how. My husband lost his sight about 10 years ago, his eyes just turned off. He had migraine headaches, weakness, and body aches that confined him to bed for about two years. Doctors could only say optic neuropathy. Tested for everything under the sun including lebers. Nothing. Symptoms getting worse now after losing about 70 lbs, having chest pains, low blood pressure, severe body aches no energy, no appetite, mood swings and still the headaches and weakness.
    KariMac 7 Replies Flag this Response
  • I really can't remember. That was about the time cell phonesWere getting more abundantly popular. We lived in four differentHouses over this ten year period. He becomes very concernedWhen he starts having the chest pains now and hisBlood pressure drops. He has become so much weaker over the last two years.I try to keep him on a multi vitamin and I have also resorted to nutritionalDrinks like ensure just to keep him from starving. If we knew what we were dealing with I would feel better about knowing how to treat him and with what. I also have been giving him garlic and alfalfa. Garlic for antibiotic properties and alfalfa for it's massive vitamin. Content.
    KariMac 7 Replies Flag this Response
  • Okay, this is not due to cell phone issues. Also, although I certainly realize that you'd take any steps necessary if your husband could regain his vision, imposing things like alfalfa, garlic or any other substance that he may or may not care for, will in no way provide the relief you seek to establish. The condition described by your doctor is more formally known as non-arteritic anterior ischemic optic neuropathy, or NAION. It can occur under any circumstances where blood supply is suddenly restricted to the retina, causing permanent optic nerve damage. I will tell you, however, that even though NAION is quite rare, it would be even more rare for it to have affected both eyes simultaneously. The condition is most typically observed unilaterally, or just eye. Several underlying causes can result in the outcome, including the use of erectile dysfunction drugs. More often, it is due to thrombus somewhere within the vascular supply which ultimately serves the retinas and optic nerve. I would ask whether a vascular CT scan has been performed and I will emphasize that it must be a vascular CT and not a typical scan. The fact that he is experiencing other symptoms which may indicate subsequent effects of a stroke-like condition make it warranted in the presence of sudden and permanent visual loss. The headaches are a major factor here and their conspicuous onset make it all the more necessary for him to be evaluated further. I would also make certain that he's been thoroughly evaluated by a neuro-opthalmologist. Although I assume that it's the case, you also don't mention whether the chest pain has been evaluated. If not, then it needs to be addressed promptly with attention to the structural and electroconductive patency of the heart as well as labs to look at his clotting factors. His symptoms would not be consistent with Multiple Sclerosis. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • I am not sure if he had the vascular ct scan or not. I do know that he had like three different types of scans, and all came back clear and with the mri they said the only thing they saw was that he had a sinus infection. After all the tests though we did have the neuro opthamologist tell us that the myelin sheeth on the optic nerve has deteriorated. That was one of the things that made me think MS. Also with the deteriorating health. At another Doctor, they shot him with some sort of dye to see if the blood flowed to the eyes like it should. It did, they actually took polaroids of his eyes to show us that the blood flow was working like it should. They actually said he would glow in the dark for a few hours after this test if he went under a blacklight. Trying to make him smile at the time, I tried to get him to go to Spencer's and stand under the blacklight to see if we could mess with people. he didn't even feel like messing with people. I truly thought it would have been fun. They ran test for metal toxicity, smoker's ambliopia, vitamin deficiency, lebers disease, which I still dont understand why they tested for that. Thanks for the advice and suggestions so far. I appreciate the help with this.
    KariMac 7 Replies Flag this Response
  • Well, Leber's would be a bit of a stretch in the case of your husband but it's a hereditary optic atrophy that typically has an onset in the early to late 20s, although some rare cases have been reported with far later onset. The pattern of symptoms, however, are more related to central occlusion or scotoma. With regard to the impression of a sinus infection on MRI, I would have them review this imaging study once again or undertake new images to rule out Esthesioneuroblastoma, which is a type of tumor that typically forms in the ethmoid/sphenoid sinus cavity and causes demylenation of the optic nerve due to compression. Cases of sudden bilateral vision loss have been attributed to this type of cancer and it should be thoroughly ruled out in your husband's case. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • a detail that I left out with trying to get my question posted was that when he was about 13 he lost his sight also. It came back after about a year, and the doctors said after a week in the hospital, that it was hysterical blindness. then 22 years later he lost it again, and it has been ten years and he is still blind. As far as the blastoma will have to see about getting his records and going to a new nuero opthamologist to see if we can get him re-scanned.
    KariMac 7 Replies Flag this Response
  • Well I would certainly contend that this detail would be critical. Esthesioneuroblastoma would now be highly unlikely. regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • sorry i didnt realize that was left out of the post that i finally got to come up. I had so much trouble getting a post to show up. I have read and re-read the post that did come up, and I think everything is stated now. Once again, sorry that was left out.
    KariMac 7 Replies Flag this Response
  • Does he have any other small, seemingly insignificant symptoms. Oral/genital ulcers, skin lightening/darkening, vitamin deficiencies, psychological symptoms? You can always have them run thyroid and adrenal gland tests. Check for any possible autoimmune diseases - MS, Sarcoidosis, Scleroderma, Behcet's, maybe even Grave's disease. If his blindness started that early on, it's likely to be autoimmune or genetic. I actually suffer from similar symptoms and reoccurring blindness have been spending years getting nothing but a run around from doctors who don't wanna look or treat beneath the symptoms. Don't be afraid to seek tests for what might not usually fit either. Abnormalities and anomalies are what medicine is all about.
    Alkalidc 1 Replies Flag this Response
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