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    Old 01-02-2004, 09:15 AM   #31
    californiasunflower
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    Re: Plz share vision problems

    I know! We missed out BIG TIME! We would have had lots of fun!

    TODAY is the day! I'm excited for you and hope all goes well! I'll be waiting to hear how it goes!

    Thanks so much for the kudos. I've enjoyed our sharing just as much!

    Talk to you soon!

     
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    Old 01-02-2004, 06:41 PM   #32
    CrazyCatLady
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    Re: Plz share vision problems

    Ok, so here's what happened today. I saw the neuro this morning. He was a nice guy. He asked me very detailed questions about my symptoms and then did various tests, reflexes, did something with a tuning fork and decided he needed to poke me with needles (to check for sensation, or lack thereof), made me walk heel-to-toe, made me stand on my heels and toes, checked my visual field, tried to look in my eyes with no success (I'm not surprised), etc.

    He watched me walk and he asked me how long I have had "that limp" for. Didn't realize I had a limp! I found out I have no sensation in my feet up to just below my knee on the left and mid-calf on the right to the needle stick. My Achilles reflexes are basically nonexistant. I can't stand on my heels or toes, nor can I heel-to-toe walk; he had to hold me up and I nearly fell over! My visual field is diminished. Everything else seemed to be ok despite the fact that he thinks I had a partial seizure in the office (According to him, I just stopped talking and started wringing my hands for maybe five seconds, but I picked up talking where I left off, as if nothing happened.).

    Then he looked at my MRI. Just to review, the radiologist read it as normal. Well, the neurologist thought otherwise. According to the neurologist, my MRI showed evidence of a small stroke in the back of my brain and mild to moderate cerebral palsy! YIKES! I can walk fine and I have no problems when it comes to intellect, besides the fact that it seems my memory goes down the toilet lately. I'll admit to being a bit clumsy and losing balance easily. Wow. I'm nearly 20 and they didn't find that sooner? He couldn't tell when I had the stroke. The only things he said about that were: A stroke at the back of the brain is rare and that he couldn't tell me if it definitely had to do with my visual disturbances. He said it was mild and, coincidentally, it's in the place where I have my headaches.

    I go for an EEG on Monday morning at the hospital. Oh, the fun that shall ensue! He hasn't mentioned anything about PTC or doing an LP yet, but I didn't mention it. He is seeing me again soon and said I could call him with whatever questions I had.

    So, that's what's happened so far. I think we're all a little bit floored still over the MRI results. My mom is angry that it was originally read as normal, but is glad we got a second opinion.

    I will let you know how the EEG goes.

    We are going to get to the bottom of this!

     
    Old 01-02-2004, 09:33 PM   #33
    californiasunflower
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    Re: Plz share vision problems

    Hi There!

    I too am floored! I'm still in a haze sorting this out.

    So glad he was a nice guy and is going to be your doctor and most of all, going to get to the bottom of this!

    Still wondering if it is APS (sticky blood) which can cause TIAs (strokes). Will be looking myself with my blind eyes on the internet from top to bottomus to see what comes together. Of course, the neuro has you on his mind all weekend and will be the best bet for that. Particularly since you are just coming up to age 20. You bet you will be on his mind! And he may be even discussing your case with fellow doctors. They do that on perplexing cases. So feel positive that he'll be working on your case mentally even off the clock!

    FYI: Have you seen AngelicBrat's posts on the MS board with regards to it mimicking APS? She has a list of symptoms with regards to that, and I recall you mentioned your menstrual cycle was difficult. That is one of them (symptoms). Anyway, I'm not the doctor but thought I would bring that up again. I am very concerned as to what is happening to you and hoping for the answers soon too in order to get the aggressive treatment. So sorry to hear about the lack of limb sensation as well.

    My best friend since we were age 15 has MS, and her condition has been kept at a plateau with the MS drugs. My point about her is that she was a whiz in school. She sat and listened to the lectures and read the assigned text once and earned an A grade. In contrast during the lecture, I took notes then to prepare for the test, I read and re-read the text over and over to earn same. I always had to work harder than her and she's still ahead of me even with MS! The body is strong and wants to heal itself. You seem strong too! I'm hoping that all that has happened can be reversed.

    I'll be checking in with you and if I find something interesting I'll point you to it!

    Will be looking forward to hearing from you!

     
    Old 01-06-2004, 08:53 AM   #34
    californiasunflower
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    Re: Plz share vision problems

    Hi! I wanted to let you know I've been thinking about you. Been down as in the 3rd or 4th day--I can't recall which--of a flareup. Can't see. On drugs. Totally out. Upset because hubby went back to work and has to come home with me in bad shape so feel bad for him! Blubbering conversation is all I can hold (blub, blub, blub) and unable to even have a hot dinner ready for him. He is a good sport and good to me. Handsome too. Looks like one of Gods greatest angels. Knows I'd do same for him.

    Here is a copy of Angelic's posts for you to review. Just an FYI. I thought that might be easier for you to see here than go searching all over. Keeping this post brief.
    **************************************** *******************
    1) "Hello everyone,
    I was reading through some of the posts in this forum, and I am compelled to share with you some information of a disorder that is known to cause TIA's and strokes and symptoms of MS. Lots of times it is totally missed or misdiagnosed as a Psychiatric conditon, MS or "nothing to worry about". Truth be known, it is VERY serious and can be treated!!!

    Antiphospholipid Syndrome (APS) also known as Hughes Syndrome was first found in patients with Lupus in the 1980's by Dr. Graham Hughes- a Rheumatologist in London England. Later on, it was discovered that APS can occur WITHOUT LUPUS. They call it Primary APS when it occurs without Lupus, and secondary when it occurs with Lupus.

    Dr. Hughes found that a lot of patients with symptoms of migraines, fetal loss, strokes, and vision loss etc had a blood disorder that was "sticky blood". Now, eventually they isolated blood tests to test someone with the symptoms and history of APS. First, let me review the symptoms with you.

    Headache or migraine
    visual problems
    Clots e.g. deep vein thrombosis (‘DVT’)
    Strokes or TIA's
    Memory loss
    Seizures, ‘multiple sclerosis’ features
    In pregnancy, recurrent pregnancy loss
    Skin - Cold Circulation

    You don't have to have ALL of these symptoms, just some of them.

    If you have had these symptoms, with NO explanation given to you, then its worth it to get checked out.

    The Diagnosing Blood Tests:

    I must add first of all that you can have APS without positive blood work! They call it sero-negative APS but it must be treated as aggressively as sero-positive. The reason they feel that people may slip through the blood work "loop hole" is that medical tests are not an exact science, there are people that do fit the clinical criteria but don't have the blood work positive at the time. Blood work can change from day to day, positive to negative!

    The Blood tests:

    Anti-cardiolipin Antibodies:

    Sometimes referred to as Antiphospholipid. It is positive in 80% of cases
    Higher Levels = Higher risk of Thrombosis

    Lupus Anti-coagulant (LA):

    Positive in 30-40% of cases
    Cannot be used if patient is on warfarin

    These tests should be done twice, within 6 weeks of each other if positive. If they are positive twice, and you have the symptoms then you probably have APS!

    Treatment for APS:

    The reason why the blood has a tendancy to clot is because it is "sticky". The goal of therapy is to thin the blood out. There are currently 3 main medications – aspirin, heparin or warfarin. Your doctor will decide which you need by how severe your symptoms are and have been in the past.

    It really is worth getting tested for you guys. It can help so much when the blood is thinned. I have blurred and double vision, history of stroke, TIA's and I also have Lupus. SO for me its a double whammy. I will answer questions if you have them here in this forum if you like Hope this helps all of you who have suffered from TIA's and may have this Syndrome. Awareness is everything! Take care!

    ~Angelic"
    **************************************** ********************
    2)

    Last edited by californiasunflower; 01-06-2004 at 08:58 AM.

     
    Old 01-08-2004, 09:09 AM   #35
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    Re: Plz share vision problems

    Hi! By now you've had the EEG! I read about them today and sounded interesting as far as hooking the patient up and asking them to perform certain tasks to monitor the brain waves. Said it takes generally one hour and results can be in right away to get interpretation. How did it go?

    Did some research by neuro symptoms and that produces lots of info. Narrowed down to seizures and infections and that produced info with regards to the following:

    Infections that can cause seizures are encephalitis and/or meningitis. Depending on the type, depends on prognosis, which can be a full recovery.
    Diagnostic tools for encephalitis are 1) Imaging--CT Scan/MRI; 2) EEG; 3) Blood tests; 4) Lumbar puncture.

    Has the neuro planned the next step to a dx?

     
    Old 01-08-2004, 07:20 PM   #36
    CrazyCatLady
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    Re: Plz share vision problems

    I totally forgot that I didn't fill you in on my EEG. That just goes to show you where my memory has gone.

    I had to have it at the hospital as an outpatient. We (my mom and I) ended up going to the wrong place, but it was no big deal. We really belonged across the street from where we originally went. It's weird here. We have one hospital that has two parts...and they're not directly next to each other. We went to the place that says Outpatient EEG really, really big on the sign outside. Lo and behold, we went to the wrong place. But of course! It says Outpatient EEG on the sign outside, but on the inside it's a night club.

    I signed in at the hospital, got an arm band and everything, and the lady who did the EEG came and got me for the test. It does take about an hour. Most of the time; however, was spent marking my head and face with blue X's and actually applying the electrodes. She got me comfortable in a reclining chair and then marked my head and face with a blue marker. Then, she scrubbed my head with something where she made the marks. She told me it was so the electrodes would make better contact with my skin (I have extremely thick hair that's on the coarse side.). She started out with about 10 on my head, one on each cheek (to monitor eye movement) and one on my left upper chest (to monitor my heart). They're stuck on with a glue-like stuff that resembles very sticky hair gel. That was the worst part because it was cold and it irritated my sensitive skin (ITCHY!). Then, she started recording for a few minutes. She had me breathe deep and fast for 3 minutes. That was hard. I didn't expect it to be that hard. At some point during that ordeal, she started typing in her computer furiously and then applied about 12 more electrodes, all the while I'm struggling to do what I was told. That was the longest 3 minutes in my life.

    So, now my head's covered COMPLETELY with colored wires (LOL! You would've gotten a kick out of me!). She just had me lay there for 15 minutes while she recorded. I had to be quiet with my eyes closed. At one point, I realized that I was beginning to fall asleep and was starting to dream...she didn't say not to fall asleep and I hadn't slept much the night before so I let myself fall asleep more. Then, suddenly and VERY LOUDLY: "Dr. Manly, 7570. Dr. Manly, 7570!" I didn't wake up, but had one of those things where you feel like you're falling and snap back, so to speak. Then I woke myself up and just sat there thinking about stuff (actually, doing math problems in my head LOL).

    Then came the fabulous flashing lights of doom. They flash a light that goes faster and faster each time for 10 seconds on and 10 seconds off. Then, at the very end, there's more of a delay and then one single flash, like a camera flash. I've always had problems with strobe lights. This time, it felt like my stomach lurched each time the light would come on. It got worse (stronger) the faster the light flashed. The slowest flashing light only made my stomach muscles tighten a little, no pain, just like trying to "suck it in". The fastest one felt more like getting kicked in the gut and lasted for a few moments after the light went off. It wasn't one big long pain, but more like a rhythmic on-then-off pain and tightness that would come in waves, start out mild, peak really bad, then end mild.

    After the flashing lights, she recorded for 5 more minutes and then I was done. I didn't have any major seizures there. I had what the neuro said was probably a myoclonic seizure a few years ago after having a bath that was maybe too hot. I should've known...there were warning signs. I haven't had a bath since that. I can't go in hot tubs or saunas. I have to really watch how hot I take my showers and stay alert for warning signs. I haven't had a bad one since that, but I've gotten close, not knowing that hot tubs and saunas had the same effect. Basically, heat sets me off. Now that I know, I try not to get too hot.

    She did know the results right away, but she wasn't allowed to tell me! It was weird, when I asked the neuro if he'd call me with the results, he kept insisting I call him. Hmmm. I even asked that, if something was really amazingly wrong, would he call me? He said that I should call a few days after the EEG for the results. I wonder why he's so insistent I call him?

    I don't even know what the worst thing an EEG can detect. I asked the lady who did my test if it ever made her mad that she couldn't tell people about their EEG. She said sometimes yes, but usually no because she doesn't have to be the bearer of bad news. All she said about me, after I probed a bit, was: "You have a very....ummm....ACTIVE....brain." with a shy laugh.

    I haven't called about the results yet. I will tomorrow and let you know. Nobody's said anything about further testing yet. I have an actual followup appointment on 2/2. The doc said I could call him anytime with questions and to just talk, or to talk about possible physical therapy (gait training, balance training, maybe?) or treatment for the headaches. He seems like a good guy, but I almost always get the feeling that I might never find out what's going on.

    I have to get up early tomorrow to go to school and pay tuition and get my books. Oh, the joy of crowds, crowds, and more crowds trying to get into one tiny building at the same time. FUN! But what I'm really looking forward to is the public speaking class I'm taking this semester. *cringe*

     
    Old 01-09-2004, 07:32 AM   #37
    californiasunflower
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    Re: Plz share vision problems

    Hi!

    That's funny about the huge sign indicating OP EEG but was really a night club inside! I had a similar experience with a phone call. Expecting to reach FEDEX, a toll free number 1-800- etc, the voice I reached stated in an odd whisper, "If you are not 18 and over, please hang up. You have reached the Intimate Chat line...." Gosh! I use ten-key to dial phone nos. since I have low vision. I'm pretty adept with the ten-key keyboard. Quite possibly I misdialed but aren't those numbers preceded by 1-900? I hung up immediately to avoid any phone charge! Then told my husband if this number appears on our bill I really wasn't interested! Anyway, I felt like you did when you walked through the door of OP EEG to find a totally different set-up from the expected medical facility!

    Oh my gosh! I can imagine having to remain still while your skin was crawling with those itchy, sticky electrodes. And I love the Blue markings! Lovely! I too avoid strobe lights or any flashing lights (nausea and headaches right away).

    I wonder what the cause for heat is to exacerbate a seizure? That's a good question to ask your neuro directly for his opinion of the possible cause(s).
    From what I'm understanding, body heat can cause symptoms to occurr in certain autoimmune illnesses. Body heat affects my eye BUT I haven't been dx'd with any autoimmune condition. All suspects of those have been ruled out by testing unless something will show later.

    Remember my husband was ill for two weeks with the flu? I never contracted it so I must have some heckuva immune system to beat that! He was terribly ill with a fever and awful respiratory symptoms. I never got it and I'm pleased about that!

    I am so glad that your neuro has opened the door to you and seems to be on the ball wanting to find the cause, treat you, and keep the communication open between you and him. He sounds great!

    I guess everyone wants the physician to be the one who speaks directly to you about your condition, results, etc., so that you get the right information and can ask him any questions directly. I think that is what is going on. Its so hard when no one is forthcoming and you need answers!

    You should be able to get the EEG results and what the neuro suspects based on all the information he has so far. If you want to know, ask him what he suspects so far and what the next step is. Maybe this is generally how he practices with all patients that he is keeping his opinion to himself until he gets a better whole picture, and then he'll purge with his determination. But you have a right to ask and let him know you want his thoughts now.

    I had an EKG done. That too is a non-invasive procedure similiar to EEG, only there isn't any markings made on the patient and electrodes are placed only on the chest down to the legs. If the machine is set-up properly, it takes just a minute to print out the recording. The patient has to be completely still while the machine does its thing. The electrodes are ripped off, patient clothed, and the technician ripps off the recording and says while going out the door--"I'll walk this to your doctor who will contact you with results." The technician is relieved of giving any medical advice or opinion to ensure that the patient is not given any erroneous interpretation. In my case what I found out is that my doctor never saw the EKG until weeks later at my scheduled appointment. It wasn't in my file yet. His nurse had to locate it and then he read it while I was there. Probably because the results were excellent that this happened. I believe if there was a problem, he would have seen it right away, and I would have been notified. Usually, no news is good news. Usually. So I've learned and have experienced during this condition that things DO slip through the cracks sometimes. When I've hesitated to call, such as when I didn't get the expected phone call I was told would come a week later about a doctor's referral, I learned that it was lost in the shuffle. So I have to force myself to follow-up when my red flag raises. Next time my doc orders a test and I don't hear from them within a few days, I'll follow up.

    I'm glad you are remaining active and continuing school, etc. That's great and a good attitude! I'm hoping to try and get some tapes to learn something while I recuperate.

    Keep me posted!

     
    Old 01-12-2004, 12:46 PM   #38
    CrazyCatLady
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    Re: Plz share vision problems

    Hi!

    Been kinda busy lately. I've had a lot of work and Friday was rather stressful. I think I can sum it up by saying, "College tuition payment Hell." Yeah, that about covers it. I ended up having to run across campus FOUR times. Gaaaaaah. Not cool. Never again.

    I start classes tomorrow morning. I'm taking algebra and intro to ethics. I'm hoping this semester will be more...fun...or better. My bio teacher last semester sucked.

    Actually, I was joking about the nightclub thing. I was trying to be sarcastic. It was an outpatient EEG, but the wrong one. There are two; one in the hospital and one nearby. I was supposed to go to the one in the hospital, but they gave us the wrong directions.

    I just called a few minutes ago about the EEG results....DUN DUN DUN...

    *sigh*

    They haven't gotten the report yet. I can't believe that. The nice lady said they'd call me today or (more likely) tomorrow with the results. I'm glad I called! That's so insane.

    So, that's where I'm at! What nonsense! haha

    I'll let you know if I hear anything.

     
    Old 01-13-2004, 04:39 PM   #39
    californiasunflower
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    Re: Plz share vision problems

    Hey! I am so silly sometimes. I can't even tell when you're being facetious! That really did happen to me regarding the phone call! Strange things occur with low vision!

    I'm going back to the neuro-ophthalmologist for an exam and determination of any treatment. I've been on an investigational drug so I'll be able to inquire if it has worked! I'm hoping to hear good news. It has been 9 mos. now and my eye is still inflammed with hemorrhages.

    How low is your visual acuity? Are you having to use visual aides to work? If any, I'm interested in what kind.

    Check in when you can! I understand being busy! That certainly is okay!

     
    Old 01-18-2004, 04:13 PM   #40
    CrazyCatLady
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    Re: Plz share vision problems

    I heard back about the EEG the other day. They lost my report THREE times. It turned out normal. Amazing.

    I don't mean to sound negative. I really don't. My spots have been especially bad the past few days (headache and dizziness too) and I almost wish someone would find something definite. I mean, something is going on and, since there's something going in, there should be something physical to correlate with it, right? I just wish we could find that something.

    I have low vision also. I was born with cataracts and a small right eye (microphthalmia). I had a corneal transplant on my left eye when I was 5 weeks 1 day old, which gave me vision in the left eye. The right eye is beyond surgery. I wear a partial prosthesis over the right eye, so it looks normal. Shortly after my corneal transplant, it rejected partially, so my left eye is clouded over half-way. I've lived my entire life with the vision I gained from the surgery and have never had problems with my eyes until now...err almost four months ago now!

    I was at the store yesterday evening. I needed chocolate cake. My stepdad was with me and I ended up needing to use my debit card. I can never really read those screens anyway, but, just as I was going to type in my PIN number, I got spotty really, really bad and couldn't even see ANYTHING. I had to have my stepdad do it, and I'm not sure he totally gets what's going on.

    Grrrrrrrr! They've never really interfered with my daily activities before. My vision seems to be getting worse, fading in and out sometimes, and this is scaring me. When the spots first started, I had hoped they would just go away on their own. When they first started, they were barely noticable.

    Now they're just ******* me off.

    I go back to the neurologist on February 2nd. I'm at a loss. The only other thing I can think that might be affecting me now, that I forgot when I was at the neurologist, is that when my mom was pregnant with me, she was exposed to a pesticide called Dursban, which is classified as a neurotoxin. She worked in a small office where they needed to spray for roaches. She had two coworkers who were also pregnant, further along (due March 1st and my mom was due February 22nd). My mom was 5 weeks along during the first exposure. This guy came and sprayed Dursban everywhere...all the pregnant ladies were reassured that it was ok. Oh yeah, ok. Sure! BOTH of my mom's coworkers miscarried within a week after the first exposure. My mom was still reassured that it was ok and this Dursban wouldn't harm a fetus. They sprayed once a week every week until my mom was six months pregnant and she quit the job because of severe fatigue. So, weekly exposure for six months for both of us.

    My mom felt like something was "wrong" the entire pregnancy, but she was told it was just first-time mom jitters. She had an ultrasound, but you could really only see my spine; I was facing back outwards. They didn't find anything wrong with what they could see on the U/S, but they couldn't see my face, or else they would've picked up the microphthalmia, and they couldn't determine my sex either (bad position + shy baby ). I was born by c-section and my mom only saw me for a few moments before they took me away somewhere. She said I was curled up really tight, was sucking my thumb, and I seemed pale to her. I wasn't crying with any stimuli.

    I basically went through God only knows what testing on my first day of life. I was born on the morning of February 15th and my mom didn't see me or hear anything about me again until the evening of February 16th. My mom woke up in a private room (she was told she'd be sharing a room originally) and there were religious icons all over the place (Catholic hospital). She was totally alone in the room and her first thought upon seeing the room she was in was that I had died mainly because she never heard me cry. I was, in fact, alive. She was told that I was blind and deaf (my hearing is exceptional but my ears are formed abnormally inside). A social worker asked her if she wanted to keep me. Well, as far as I know, she kept me. I got jaundice when I was 3 days old and had to stay in the hospital for a week. I finally got to go home with the assumption that I'd be blind my entire life. It was the fifth eye surgeon who agreed to operate on me. The first four had never seen anything like me before! They were too scared to touch my eyes with a 9-foot pole. The fifth surgeon didn't even know if the surgery would work because I was missing so many structures in my "good" eye, but he did it with the attitude that I had nothing to lose. I'm glad he did the operation. I finally started responding to stimuli after my surgery...only I went from being almost nonresponsive to being hyper-responsive. I'm still very hypersensitive to things, pain, chemicals, soaps, foods, basically anything. I've just learned to adapt the best I can.

    I did some research on Dursban and found that most, if not all, of my medical problems in my life are linked to it. The thing that scares me the most is that I read that there can be neurological affects beginning around my age with fetal exposure. I haven't done that much research on Dursban, but what I've seen so far is not good.

    Every time I tell a doctor that I was exposed to this, they look at me like I'm nuts or act like it's not important. I wish I could see someone who was familiar with Dursban exposure, or who at least knew something about it.

    It would make my day if my neuro knew something about it or had some insight as to what is going on with me.

    I just have to keep hoping that I'll find an answer. I've been finding it harder and harder lately to keep my hope up, but I HAVE to. I'm feeling like doctors are not beeing thorough enough. I guess I just have to speak up and say that I'm extremely concerned.

    The squeaky wheel gets the grease, right?

     
    Old 01-22-2004, 10:32 AM   #41
    californiasunflower
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    Re: Plz share vision problems

    Hey! Was glad to hear from you. I do understand how disappointed you were with regards to the EEG results. I know your not being negative. You just want a name to what is causing all these symptoms.

    Your profound story is interesting and evokes many feelings allowing others to stand in you and your mother's shoes. I can just imagine her concern for you and the difficultly she endured trying to find the right specialist to treat your eyes. I regret that you've had so much hardship to adapt to from the beginning. I strongly think you should call the neurologist and tell him. With this background info, he'll be able to do the research necessary, if he isn't already aware of the toxic affects of Dursban. The neurologist needs to be aware of all your history to piece the symptoms together.

    Yes, the eye problems are adversely affecting my life too!
    Thank goodness for the ten-key pad and knowing the keyboard! I too can't see what the ATM message prompts are and either ask the clerk, "what's it saying" or get the hubby to handle the transaction--which he usually does.

    If I find any good info with regards to Dursban, I'll pass it on. I'm going to the doc next month too so we'll have to share! Keep in touch. Let me know if you call your neuro. You are strong and you'll get through this too! We'll be toasting to the team who comes up with the diagnosis! Lets look forward to that!

     
    Old 01-22-2004, 04:21 PM   #42
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    Re: Plz share vision problems

    One thing I have not seen mentioned on this thread is an eye condition I have called pars planitis. There's not much that can be done for it, and eventually you just have to learn to live with it. Lots of black floaters in a bright area, especially when driving, and sparkly floaters in a dark room. Do some research and see if this sounds like something you might have.

     
    Old 01-29-2004, 08:48 AM   #43
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    Re: Plz share vision problems

    Hi ARWMOM!

    Thanks for posting and welcome to the healthboards! What can you share about pars planitis? We'd sure like to hear from you about it!

     
    Old 01-29-2004, 08:49 AM   #44
    californiasunflower
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    Re: Plz share vision problems

    Hey Crazycatlady!

    How are you doing? I've been down with illness. Hubby's illness returned and he had to get meds for it. Doc thought he had pneumonia and now I've been dealing with it. Broke out in a rash/hives so unsure what that is due to.
    I haven't forgotten about you!

     
    Old 01-30-2004, 01:57 AM   #45
    CrazyCatLady
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    Re: Plz share vision problems

    Now I can sound like a good Southerner and say: Howdy, y'all!



    I've been getting more work than usual and school is in full swing, although I had a snow day this past Tuesday! I've been a little busy.

    I've never heard of pars planitis. I'm not sure if my eye dr. has heard of it, either. LOL I should print out literature for these docs and maybe I'd get somewhere faster.

    I just went to the orthopedist (foot and ankle specialist) on Wednesay. I started having really bad ankle pain (like where your foot meets your ankle on the top) as well as locking a few years ago. It started out locking and painful once in a while. It has progressed to where I can't walk through a supermarket without having to get totally off the ankle. The dr was a really nice guy. They finally got weightbearing x-rays, which only makes sense because my pain is on weight bearing (ok, so rarely it will throb at rest). I have a few problems contributing to the pain:

    Severe ligamentous laxity. I can basically voluntarily dislocate all of my joints and I can bend my joints backwards almost all the way. He said that it's rare to see that at my age.
    I also might have a vascular problem because my legs from knees down are purplish and have very slow capillary refill. He pressed on my foot and the skin was still white at the end of my visit (15 minutes or so).
    The ligament problem has caused my left heel to turn outward. This is causing my Achilles tendon to shrink and get tight. Also, it's making my ankle bones crush and deform structures in my midfoot.

    He actually wants me to see a geneticist to rule out any genetic syndromes because, according to him, I'm an "interesting case" and am very suspicious for a syndrome. He was keeping in mind my Dursban exposure, too.

    Long story short, a brace won't help, like I had hoped it would. It won't help because of my Achilles tightness. When you correct my heel alignment, my foot won't bend up at all. So, no brace.

    I have to have ankle/foot surgery this summer. Probably in May when this semester is over. I'm looking at an Achilles tendon lengthening and some kind of fusion. We haven't discussed surgery at length because he basically gave me the two options, just tendon lengthening and wearing a corrective brace forever with the potential for failure of the correction OR tendon lengthening with fusion and no long-term brace with much less chance of failure of correction. Choice B has a longer recovery time: 3 months nonweightbearing and then 6 to 9 partial weight bearing.

    I think Choice B, even though it has a longer recovery period, is more sensible because the chance of having to have more surgery sounds less likely.

    I still have to call him and tell him I'm interested in surgery. I'm still trying to process this. He explained why conservative treatment wouldn't be effective and my mom and I do think surgery is necessary.

    If I don't have surgery, he told me:

    I already have arthritis in that ankle. I have moderate to severe changes in the joints. If I let it go for even 2 years, I could have such bad arthritis that it would warrant a joint replacement, which they don't do until the age of 50.
    The heel would continue to turn outward and the foot would continue to "sink", which would cause the tendon to continue to shorten. If it continued to do that for, he thinks, two or three more years, it would be inoperable.
    He also thinks the arteries and veins are being crushed in my foot, cutting off circulation. If it continued on the path it has gone down over the years, a progressively getting worse path, I might risk losing part or all of the foot. He already said he can't feel any pulses in my ankles or feet (both sides) so he's getting vascular studies done, too.

    So there's my latest scoop. I'm still with spots and headaches. Oh, the joy of it all. My chiropractor is very concerned about the headaches; feels like I'm being strangled at what feels like where the spine and brain meet. He said to call him immediately if I have another, which is impossible because I get slurry and stupid when I get those headaches. Ha ha. They make me sound somewhat drunk. I'm supposed to see the neuro on Monday morning.

    Good things have happened recently! One of my former teachers nominated me for something in the paper here. Some kind of "Who's Who" thing. I took the college placement test today because I want to apply for radiography. I had to re-take it because, when I took it three years ago, I didn't score high enough in algebra to apply for radiography. So, I retook it today. I hope I did better in algebra this time. I love geometry, but algebra sucks (as most bras do. hee hee). I'll know if I scored high enough on Monday.

    No more sick hubby! No no no! That's just not acceptable. I'll bet Orlando Bloom and Keanu Reeves don't get sick. Heehee just teasing! Hopefully, now that he has some medicine, his illness won't come back as easily. When you got hives, were you taking anything? If not, it could have been just your immune system reacting to whatever is invading it. Probably a histamine reaction or something. Just watch out for a red rash on your hands, face, chest, or belly. Not blotchy, hivey looking stuff, but an angry red rash.

    I get hives and blotchy rashes when I'm sick, too. I get hives and blotchy rashes from everything, though! You guys start feeling better! NOW!

    I'd better go to bed before I write a novel. I'm already breaking the rules: putting ortho stuff on the neuro board! GASP!

     
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