Discussions By Condition: Medical Stories

The saga continues.

Posted In: Medical Stories 11 Replies
  • Posted By: gsch12
  • May 28, 2007
  • 02:53 AM

I guess I haven't been in this sight for some time. Luckily, someone saw my story and sent a reply. I had forgotten about it since my memory is really bad again. I'm not allowed to cook. They are afraid I'll set the place on fire. I really need to talk with others with similar problems. I am house bound and have not driven for 2 years. I get out to dr's appointments and get to go the store on occasions. When I wrote last I told you that I have been suffering from a myrid of symptoms for sometime now. Guess almost 8 years off and on. The saga continues. Approximately 2 1/2 yrs ago I noticed that my eye sight was getting bad. I new I had Crohn's Iritis, but this was different. It was most noticable in the right eye. Dr. sent me to an opthomologist who diagnosed a cataract. He said I had lost a complete eye chart, however it was correctable with glasses an at my age would probably fine for a couple of years or more. App. 2 weeks later, after getting used to the high power lens etc., I noticed that I wasn't seeing well again. Went back to dr and he says he can't believe it but I have lost another eye chart and now, it cannot be corrected except by surgery! So, in May 06 I had the surgery. All went fine and after a few days, it seemed I could see better. About one week later, I noticed it felt like I had something in the left eye. Not the one with surgery! As the day wore on, it got worse and I had extreme nausea. I continued at work because I had a very demanding job and so many things had to be completed every day or there was no catch up time. By the time I went home, I had vomitted twice, had extreme nausea, and was starting to get dizzy. I drove and could not see out of the left eye, all I could see was light and millions of dots and what appeared to be a thin line down the middle. Thank the Lord, He had to have been with me, I got home and went to bed, hoping it would be better next day. Got up with extreme migraine, I have had them off and on for years. Took my medication and went to work. Called the drs office and talked to them. My dr was out of town and they said I had to be seen immediatly. Sent me to a different dr. When I got in the car to go to the dr, I realized I had no periphial vision in left eye. I had to turn my head completely to look to the left. My vision was very blurred. Made it up to the dr and he said I had some kind of thing where a blood vessel had ruptured in my eye and that I must be very careful that it could be indication of an impending stroke. I drove myself back to work, and then home several hours later. Slept most of the week-end and was some better by Monday. Made appt with my regular dr to go in for an exam in about a week. They had me in the chair and the tech put in the yellow drops and I started feeling very strange. Told her, but, she just kind of ignored me. She turned on the blue light to look into my eye and the next thing I remember, was a room full of people , me on the floor asking for a waste basket, I was going to be sick. A friend had taken me and I talked them out of calling 911. I went home and had an appt. with my general practioner about a week later. I of course continued to work! Didn't feel that it would get done if I wasn't there. Felt really bad and was getting a ride to work from a friend. I felt worse as each day went by. The second day, I started seeing things and any time someone would come up from behind me, it would startle me. Around noon, I talked with my friend to see if they could come and get me early that day. They stated it would be a few hours. I was told that app. 1/2 hr later the head nurse came into my office to find out why I wasn't answering the phones. I was just sitting there. She said that I talked but she couldn't understand me. When she got me up, I could barely walk and only staggered. I talked her into taking me home. My friend took me to the ER where they did tons of tests, wanted to keep me, I refused. Agreed that if I got worse during night, I would come back. Returned to the neurologist the next day I had seen in the ER and was told all my testing had been normal. I was speaking better and he suggested I may have had a TIA or something, they did more MRI, MRA, etc and all that turned out normal. I insisted on being sent to a teaching hospital. I had seen 5 neurologist here in this area and millions of dollars of tests and they found nothing. I haven't driven since the day I was taken home from work. I have't worked! I went to the University of FL in Gainesville and was seen by the neurology dept there. I was diagnosed with Disabling Migraneous Aura and Severe Sleep Disorder. They had me on narcotics, app 10 different kinds at different times to attempt to break the aura. Only 15% of the population that have migraines develop an aura and only 5% get the type that I have. Usually it can be broken with narcotics. I cannot tolerate the narcotics. They could not get me to a theraputic dose. I had extreme nausea, and vomitting that finally culminated in Jan of 06 with me not being able to stop vomitting, went into convulsions, and my roommate called 911 and I was in the hospital 10 days with nothing but IV's. My body had started shutting down from the narcotics and I had extreme dehydration from the continuous vomitting. They did dozens of tests why I was there and other than an 24 hour zofran drip and a nasal tube, O2, saline solutin and complete bed rest. All their tests basically showed nothing other than my blood work, the electrolytes where all screwed up. I have been on disability for 2 years now. I am fighting social security for SS disability and have been turned down 2 x and have been in the que waiting to get on the list to have my case appointed to a judge for 9 months. I have been told it could be another 24 mths before I get the hearing because FL is severly back logged. I do have an attorney. I have exhausted my COBRA, that was gone as of 5-18-07. I received a letter from my LTD people who have informed me that if SS is still stating that I can go back to work by 11-07 that they have the right to discontinue my long term disability. In other words, my world is falling apart, I have no control over anything. I have to use a walker to get around. I am in severe pain all the time, through out my body. I have 2 different types of migraines that I get daily and the one is called ice pick and feels like someone has stuck an ice pick in my left eye. I cannot see out of it for seconds up to several minutes and then my vision is so blurred that I cannot read much or do much of anything. I live on valium. I have 2 powerful sleep medications that knock me out at night, one to put me to sleep,and one to keep my asleep longer, but, they give me night terrors! FUN!! I have extreme anxiety attachs and my immune system is shot since I am never around anyone anymore. I have to wear a mask when I do get out. I have extreme photophobia and wear sunglasses all the time. I must wear two pair when I get outside or if I get out at night and there are car lights. I must keep my house dark and have installed dimmer switches in the bathroom. I am so depressed most days I don't even bother to get dressed. My skin is so thin that I bruise very easily and it has now started to break down and I get rashes that turn into bumps that break open and it takes months for them to heal. Oh, I cannot tolerate oders of any kind. I live in a condo and if one of the neighbors goes out on their lanai to smoke, or they cook something smelly, I have to mask up and often use O2. I have O2 around at all times because it helps to shorten the length and intensity of the migraines. Most of the time anyway. I don't mean to go on forever. I just wonder if anyone would like to at least converse. My drs are just shrugging their shoulders and have told me we will just have to wait and see what turns up or maybe I might get better. At this time they are just using pain releiving measures and waiting until something else comes up! My whole life is in limbo, I am very depressed, grouchy and irritable. I really try not to be. I realize that many people have it worse than I do. I worked with dialysis patients for 15 years and have always worked within the medical field. That is something I really miss is the contact with people and taking care of those who need help. I can't even help myself anymore, how could I possibly help anyone else. I'm getting where I just don't care. The medical dr's can't find anything and the head drs want to know why I am there. Of course I have't seen one for awhile. Wonder what they would think now if I told them my true feelings. I have everyone in here on my prayer list. I of course cannot remember each and everyone of you but I have the sight on my list and I hope that maybe, it will help someone. Sorry for the long, long, story. Please believe I understand each of you that feel helpless. I guess there are many of us out there. I really would like to know if anyone has any ideas about SS disability or what I can do now that I have no insurance and may soon have no monies at all coming in. Guess I will end up at salvation army or in the woods. I don't know!! It's really scarey. At least I live in FL and I won't have to worry about the cold in the winter. Maybe I will get fortunate and the Good Lord will call me home. I'm really not nuts. Just frustrated, depressed, and lonely. Thanks for listening. Linda:)

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11 Replies:

  • Hi there, WOW...what a story. You most certainly have my undivided attention. Unfortunately I am not a nurse or a dr. But I am a psychologist who works with kids, and above all, I do care. Anyways, I'm sure some people may think that I'm stupid and totally on the wrong track here, but I was just wondering if you had put any thought into the fact that you worked in dialiss (however you spell it!!) when you were more mobile-would that maybe have something to do with it? (Im just taking a stab in the dark here, like I said I'm no dr) With regards to your understandably depressive state, i am here if you need to discuss anything....all you gotta do is ask... I will be here.:) byeeeeeeee Emily
    EmilyMcN 67 Replies Flag this Response
  • Emily, I appreciate your reply. I'm not quite sure what you were referring to as far as my problems go? Dialysis, just so you know. There is a good chance that it may be a genetic defect. My daughter did some research and after doing all the leg work myself, I finally talked them into testing me for CADASIL. It is rare and can have mulitple symptoms. However, the dr that finally agreed to have me tested, stated that my chart reads like a symptmology for the disease. The tests came back unconclusive. They could neither rule it out or say that I do have it. They stated that they would wait and see what happens in the future as this disease slowly progresses over time. I am praying that I don't have it due to the fact that there would then be a 50/50 chance that it has been passed on to my children. With my family history it won't surprise me if they find that I do have it. Of course no one in my family was ever diagnosed. Most drs have not even heard of it. That is why it took awhile to convince someone to have me tested.I still feel like my world is spinning out of control. Every day when I get up, I thank the Lord for a new day, however, I really just don't want to even get out of bed. Many days I don't even get dressed and I am almost ashamed to admit that unless I'm going somewhere, I don't care if I even shower or comb my hair. I know that is awful, but, that is the truth. Thanks for replying. Tell me about your family. I think it's great that you work with children. I worked with developmentally developed children at a school for 7 years. Then they integrated them into the regular schools, I got a divorice from my extremely abusive x and got into a different line of work. I've always been helping people in one way or another since I was 16 years old. I will be happy to hear from you. God Bless, Linda:) Hi there, WOW...what a story. You most certainly have my undivided attention. Unfortunately I am not a nurse or a dr. But I am a psychologist who works with kids, and above all, I do care. Anyways, I'm sure some people may think that I'm stupid and totally on the wrong track here, but I was just wondering if you had put any thought into the fact that you worked in dialiss (however you spell it!!) when you were more mobile-would that maybe have something to do with it? (Im just taking a stab in the dark here, like I said I'm no dr) With regards to your understandably depressive state, i am here if you need to discuss anything....all you gotta do is ask... I will be here.:) byeeeeeeee Emily
    gsch12 11 Replies Flag this Response
  • I guess I'm still not sure how to do this page. I may never figure it out. I believe that I sent a reply to Emily but I'm not sure. If not, Emily, please excuse my ineptness and I do appreciate your note. Please write again. Linda:)
    gsch12 11 Replies Flag this Response
  • Linda, I just read Emily's post also. She has recently been diagnosed with ME?apparently related to Chronic Fatigue Syndrome. Perhaps looking into that may help. I have a friend in Pennsylvania who is also homebound and has no driver's lisence. She recently was diagnosed with CFS.
    Anonymous 42789 Replies Flag this Response
  • Hi Linda, no apology is necessary. 'Unregistered' is very much on the right track. I, as unregistered had mentioned, have been daignosed? with ME. I think you should get it checked out. Do your 'maths' so to speak, be smart about it, get in the 'know how'. I had a terrible time with all this. Exhausting too. Had every possible diagnosis thrown at me: Bronchitis, Influenza, Daibetes, Tonsilitis, Sinusitus, Leukemia, the list went on...and on. It took me to ask my Dr about ME, thats where things got interesting. With years of my medical history, diagnosis and unaccounted symptoms!!! Anyway, I do recommend you push for answers, be knowledgable and prepare yourself before you see the Dr. What harm can it do?? :)
    EmilyMcN 67 Replies Flag this Response
  • Hi Linda, no apology is necessary. 'Unregistered' is very much on the right track. I, as unregistered had mentioned, have been daignosed? with ME. I think you should get it checked out. Do your 'maths' so to speak, be smart about it, get in the 'know how'. I had a terrible time with all this. Exhausting too. Had every possible diagnosis thrown at me: Bronchitis, Influenza, Daibetes, Tonsilitis, Sinusitus, Leukemia, the list went on...and on. It took me to ask my Dr about ME, thats where things got interesting. With years of my medical history, diagnosis and unaccounted symptoms!!! Anyway, I do recommend you push for answers, be knowledgable and prepare yourself before you see the Dr. What harm can it do?? :) Hi Emily, Thanks for replying. I have been going to dr after dr with all the symptoms and all the tests and they cannot figure out what to do with me. It isn't that they don't care, they just aren't able to get it together. I'm at wits end. I want to continue, however, now that I have no insurance, getting into see any new dr's is going to be impossible. Thanks for caring and I am doing whatever research I can. I applied for a migraine research recently and was turned down because I get too many of them. They want persons with 5 or less a week. That leaves me way out, however they did say they would keep my information if anything else should come up. Take care. Linda
    gsch12 11 Replies Flag this Response
  • Anyone home bound? Anyone with disabling migraines. If so, lets talk. Linda
    gsch12 11 Replies Flag this Response
  • Migranes, yes now that can be a pain...excuse the pun. But shame on the migrane research program..."you have too many so they turn you down?" What kind of research program is that? Having too many migranes should put you in front of the queue, not left behind a closed door and definately not in the 'too hard' basket for another day. As I said before...push for it, challenge them, become a pain in the butt if you have to! Have you heard of a "Migra Stick?" Its a natural remedy that helps with migranes. I did a little test on myself (Luckily I dont get many migranes). I made sure that I didn't have even the slightest headache for 10 days. Then I ate food that I knew would trigger off a migrane, or at least a severe headache. Migranes are very closely related to digestion...especially stomach functions. So, I used the stick (you massage it on the temples) and believe it or not, it actually worked. Call it brilliance, call it a placebo effect, call it what you will, but it worked for me. In relation to many symptoms with the end note of "I dont know whats wrong!?" Take care Emily:)
    EmilyMcN 67 Replies Flag this Response
  • I have never heard of the stick. They have done a ton of stuff to me. I did a regime or narcotics, they tried having me come in once every one to two weeks and they drained spinal fluid because they checked it and it was borderline high and the first few times they did it, I didn't have a migraine for 72hrs the first time to 48 hours the next time and then it went down from there. I had five of them, they discussed putting in a stint into my brain to drain the spinal fluid, however the way my body seems to react to anything different, they were just too leary to try it. They were afraid that it could cause more things to go awry. Then they decided to discontinue the spinal taps because we weren't getting good enough results to warrant the risks. I took the test you recommended, my score was 214. Guess that is rather high. I talked with my primary physician about CFS and she just blew it off. She said that was just a catch all label that dr's give when they can't figure anything else out. I don't necessarily agree with her, especially since I have had the Ebstein Barr titer tested back in the early 90's when I was experiencing severe fatigue and it was off the charts. I believe that the two are basically in the same catagory. I took B-12 shots and that helped. Things are a little difficult since I now have no insurance. I doubt that any than my regular dr's would even see me? I am doing alot of research on what is out there and where I can go to find it. I was on the phone most of the morning and that was exhausting. Since my speech is effected by the aura, people have a hard time understanding me on the phone. The more questions they ask trying to get info, the worse my speech becomes because of the stress. I never start without at least 10 grain valium. Even then, I end up getting upset and crying about 80% of the time. It seems there is never any good news. Oh well. I woke up, was able to get up and take nourishment. We got some badly needed rain today, it will help put out some of the fires, hopefully. As long as I have the ability to keep fighting, maybe, something will come up. I just have to believe that it will. That is how I have made it through many difficult situations in my life. Thank you for your time and your replies. I appreciate hearing from you. God Bless, Linda:)
    gsch12 11 Replies Flag this Response
  • Linda, any doctor who "blows you off" when you present with a valid concern is not really a good doctor. You know your body better than anyone. You have been sick for a long time. CFS/ME are real diseases and affect people everyday. I was diagnosed just yesterday, myself after many tests ruled out other possibilities. There is much information on this board alone regarding it. Find a new doctor as soon as you can, one who will take you seriously.
    Anonymous 42789 Replies Flag this Response
  • I don't even know how to go about getting another dr now that I have no insurance. I found out that I had 63 days that I qualify for HIPPA guaranteed carrier insurance. No pre-existing clauses. So, I made many calls. Found out who all the carriers were. I can't afford any of them. Even though they cannot exclude you from any services for pre-existing conditions, they can ask health questions and that is how they base their monthly payments. What is really discouraging is, that since my LTD sends me a little over a $1000 a month, if you are receiving over $12,000 a year. you don't qualify for any free prescription programs. Just some reduced stuff and believe me, with all the meds I take, it's really scarey. I don't know what will happen 3 mths from now when I start running out of my meds. I do know that I will be able to get $4 generics at Walmart, but, I have about 5 that have no generic and I just don't know what I'll do. One is over $1500 per mth and another is over $1000 per mth. I don't think a 30% discount is going to do me much good. Even if I got a 50% discount, I couldn't afford it. I have crohns disease and if I don't take that medication, I will end up in the hospital. I can't do that either. It is a scarey proposition. I would like to know, if you have had a complete hystorectomy, does that mean that you should never have another pelvic check? I don't mean to sound dumb, but, I still have a cervex correct?? I have been having a discharge and was having painful intercourse when I was having it about 2 yrs ago! I told my dr about it and she stated that there was no reason to check anything out because I had the hystorectomy! Does anyone have any adivce on that? I would feel alot better if the dr would do a pelvic exam and just make sure that all is ok. I would really appreciate a reply on this one. As far as changing dr's, if anyone has any idea on where I can start, please let me know. Like I said, I do not have any insurance. My COBRA has expired and I cannot afford any of the HIPPA programs out there. They range from $700 up per month and they have huge co-pay and deductables. Many do not include pharmacy. Thanks for any suggestions! God bless, Linda
    gsch12 11 Replies Flag this Response
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