It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board

  • Coping with undiagnosed disease

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 05-05-2002, 10:34 PM   #1
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Question Coping with undiagnosed disease

    For months I have been trying to cope with a chronic undiagnosed disease. Trying to mentally and emotionally deal with the unknown disease, not to mention all the suffering I have with the symptoms has taken a toll on me. I am seeing many Drs., searching for the diagnosis. I'm also seeing a therapist for the depression, and anxiety. That's not enough. I need to hear from others like me. Share with me how you are suffering physically, mentally and emotionally. Also, what helps you to cope! All responces will be greatly appreciated. Please Help!

    ------------------
    Lourehha

    [This message has been edited by moderator1 (edited 09-28-2002).]
    __________________
    Lourehha

     
    Sponsors Lightbulb
       
    Old 05-07-2002, 06:37 PM   #2
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Post

    [/QUOTE]
    Dear Denise,
    God Bless you for your reply. It helps to know that someone else can relate to how I feel. Your so right, we can't fight unless we know what we are fighting. I've felt so defeated not knowing what to fight, for a lack of diagnosis. Drs can't seem to understand that feeling. Thanks to your reply, I at least know I'm not alone. I will pray for your son, and family. Again, God Bless Lourehha
    __________________
    Lourehha

     
    Old 05-12-2002, 09:08 AM   #3
    HalleyJ
    Inactive
     
    Join Date: Mar 2001
    Location: MN
    Posts: 75
    HalleyJ HB User
    Post

    Lourehha, If it helps to know you are not alone, I've been dealing with not knowing why I have pain for 2 years. I've been to doctor after doctor and have had test after test and still no answers. As if that were not enough, my husband was admitted to the hospital last Thursday am for neurological problems and has had many tests. Everything so far has come back normal. Dr said next test is brain biopsey. This one scares me. He will be 59 in July. I agree with DDekruif. Research as much as you can. My internal medicine doctor hates patients doing that. I asked him if the fact that patients could use the internet to research had made his job easier, thinking if patients were better informed they would know more. He said no it made it harder. Perhaps because patients are asking harder questions. Try and take one day at a time, do only what you feel you can do and rest. I need to get to the hospital to see my husband now, but will look for your posts to see how you are doing. Halley

     
    Old 05-13-2002, 05:42 PM   #4
    quiltingjean
    Junior Member
     
    quiltingjean's Avatar
     
    Join Date: Apr 2002
    Location: Crestline,CA,USA
    Posts: 33
    quiltingjean HB User
    Post

    You are absolutely right in being frustrated. It is OK. It is also OK to go and beat a fence post or hit a pillow or what ever you need to do to help alleviate that frustration. I too have to deal with an unknown DX. I have been dealing with the unknown for over 6 years. At first I went to doc after doctor, had test after test only to be told I am blossoming into something. They don't know what. I have 13 DX from atypical fibromyalgia to rhumatoid arthritis to lupus and yet they aren't sure if I really have any of them. But what I have found after all this time works best for me is acceptance. I have accepted the fact that this is my life. I know look for whatever positive I can find in my life no matter how little it is. I can no longer do the things I love, but I have found new things to love.

    SO dont' give up, but don't let it overcome you either. DOnt' let the search rule your life. Get as informed as you can but don't forget to live your life on the way. Good luck on your endevors. Jena
    __________________
    Jean

     
    Old 05-14-2002, 05:02 PM   #5
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Post

    Dear Haley,
    God Bless you for taking the time to respond to me, especially in the midst of all the trips you are making to visit with your husband in the hospital. My heart and prayers goes out to you and your husband.
    You are right. I have found out the hard way, all of my docs. (which are many) resent internet research. I have tried so many different ways of approach, none to my avail. When I try to tell them how much suffering I have physically, they tell me I need a shrink. When I try to lightly touch on it, they ignore the issue. I was released from one hospital, not being able to stand on my own to feet. Kept overnight, and told there was nothing wrong, only to find out two weeks later from an M.R.I.report that I'd had another stroke. It was to late to treat me then. These days doctors are refusing to give concrete DXS., and people are getting therefore untreated for the causes. I don't understand. The stroke are just one of the many physical problems I'm having because of no DXS. The support from others in the same situations means so much to me and does help. You and your husband can relate, but to others who have never been faced with similar circumstances can't even begin to imagine what its like, or about. I value the advice you have given me. I will pray for the good Lord to guide both you and your husband through your trying times of pain and suffering, and to heal and give you both strength. You're not alone. Please do stay in touch. Again, God Bless Lourehha
    __________________
    Lourehha

     
    Old 05-14-2002, 09:31 PM   #6
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Post

    Dear Jena, God bless you for your reply. It is very good sound advice, I hadn't thought of before. Because, I've been so wrapped up in trying to get a diagnosis so I can be treated, that I've lost sight of other things around me. My whole life as I knew it has been changed. Now, somehow it is time for me to try to let go of the old and pursue the new. It's difficult to accept, yet not give in. It's all a new challenge to me. From your advice, I can tell that you have been severely suffering also and can relate, or otherwise you wouldn't have gained the wisdom you have in regards to how to cope. I'm so sorry that you are suffering, and my prayers are with you for healing and the answers you need. Keep in touch God Bless lourehha
    __________________
    Lourehha

     
    Old 05-14-2002, 09:47 PM   #7
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Post

    Dear Denise, Thank you for geting back to me, and for your concern. I've been to Dr. after Dr. Including rheumatologists, cardiologist, and neurologists. My ana and ana titer keeps coming back positive. My anti-dna comes back neg. I have constent vertigo, I can't drive, and I use a wheelchair and walker because of it. I get extremely weak, my legs swell, I'm on blood pressure medicine. I had a bone-marrow test to outrule cancer, then I had a skin biopsy looking for auto- immune disease, nothing thus far has been to any avail. Whatever is wrong with me, is attacking my central nervous system and my vascular system. I was diagnosed as having cerebral vascular disease and a stroke, but no diagnosis as to why, or what's causing the neuro. complications. How is your son doing, Denise? I'm keeping him in my prayers, and praying that the good Lord will guide you to the answers you need for his healing. Keep in touch and God Bless. Lourehha
    __________________
    Lourehha

     
    Old 05-15-2002, 08:44 PM   #8
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Talking

    Dear Denise,
    Thanks for getting back to me. I'm real happy to hear how your son has been able to catch up with his schooling. How determined you and your son both were, that's a lot of obstacles to win over. BUT HE MADE IT< AND SO DID MUM ALONG WITH HIM. I'll continue to pray for your family, and especially for your son as he goes through his next upcoming test. Talk to you real soon God Bless Lourehha
    __________________
    Lourehha

     
    Old 05-19-2002, 05:43 PM   #9
    Tumsch
    Newbie
     
    Tumsch's Avatar
     
    Join Date: May 2002
    Location: scotland
    Posts: 3
    Tumsch HB User
    Post

    i have had a number of symptoms the just keep increasing at one point i was seeing 7 specialists i have been diagnosed with a number of things but they dont explain everything then i got some connective tissue disorder "but it can take years for antibodies to show up" then i still have some doctors asking id im depressed or stressed. ofcourse i am but its due to the not knowing and the disappointments. they diagnose one thing give you the medication and nothing changes. its very frustrating. i'm only 25 and this has been going on for over 6 years.
    sorry for ranting
    Tumsch

     
    Old 05-20-2002, 12:38 PM   #10
    Jaytor
    Senior Veteran
     
    Jaytor's Avatar
     
    Join Date: Dec 2001
    Posts: 802
    Jaytor HB User
    Post

    Here's a link to the clinical trials on amyloidosis:
    [url="http://clinicaltrials.gov/ct/gui/c/w1r/action/SearchAction?JServSessionIdzone_ct=6vm4t xoiv1&term=amyloidosis&submit=Search"]http://clinicaltrials.gov/ct/gui/c/w1r/action/SearchAction?JServSessionIdzone_ct=6vm4t xoiv1&term=amyloidosis&submit=Search[/url]

    Even if you're not interested in participating in a clinical trial, they provide some background info for when you discuss your child's treatment options with your doctor[s].

     
    Old 05-20-2002, 08:38 PM   #11
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Post

    Dear Tumsch,
    Please don't be sorry for ranting. That's what I'm on the board for. So I can cummunicate with others, who are also suffering from a no Diagnosis. I'm going to give it a made up name and start calling it the No Diagnosis Syndrom. I know exactly how you feel. After many times of vistiting Dr. after Dr., getting my hopes up that they would find out my problem, give me a diagnosis, then treat the illness, that I could get on with my life, I would find that I had only opened another door to disappointment. I went for psych. therapy, hoping they could help me cope with my undiagnosed problems. And, again I was let down by them, because they, of course, said it was all in my head. To my suprise, they have no answeers, unless they see a diagnosis. Back to square one. I tried to tell them I am depressed, because I'm sick and I'm getting no answers, or treatment. Only their walls seemed to hear me.
    These things I've told you, to help you know that your not going through everything alone. I'm amazed to find out there are so many people like us suffering from the Undiagnosed syndrom. It has helped me to know I'm not alone, and I hope it helps you to cope.People like us have to stick together and be each others strength, because we are the only ones who knows how it feels, not head shrinks.
    I'm so sorry you are faced with this at such a young age. When your 25, and just starting out with making a life for yourself, and this to happen. I know its painful living with the symptoms, not knowing which way to turn, or what to do, but I found it helps me if I can keep my mind busy. Please keep in touch and know that I will keep you in my prayers. God Bless for writing to me Lourehha
    __________________
    Lourehha

     
    Old 05-21-2002, 10:33 AM   #12
    Kaecee
    Junior Member
     
    Kaecee's Avatar
     
    Join Date: May 2002
    Location: Brookings,South Dakota
    Posts: 14
    Kaecee HB User
    Post

    DDekruif...where in SD do you live? I am in Brookings..

     
    Old 05-22-2002, 08:17 AM   #13
    ilonaross
    Junior Member
     
    ilonaross's Avatar
     
    Join Date: Oct 2001
    Location: new york city
    Posts: 14
    ilonaross HB User
    Post

    Hi. I think a few of you posters should go out of your way to rule out one possibility: Lyme Disease. Now, a regular GP isn't going to be able to do this, since most doctors don't really understand these emerging tickborne diseases, and since many Elisa and Western blots either give false negatives or are misread by doctors, you need to find what's known as an LLMD (Lyme-literate MD.) Expect to pay for this... the correct tests run up to $1K, and the doctor's appointment will probably be close to $400... but at least this way you'll be able to rule out Lyme, bartonella, babesiosis, ehrlichiosis and a few other diseases that are routinely misdiagnosed as fibromyalgia, ALS, MS, irritable bowel syndrome, to name only a few. Believe me, it will be worth your money. It took me a year after I first got sick top get a proper diagnosis, and the insurance company probably spent close to half a million dollars on my hospitalization, because their idiot doctors were too dumb to look for an underlying microbial etiology. Thank you, I'll take a bow, because after doing all the research myself I finally dragged my butt off to an LLMD who did in fact diagnose me with Lyme. After two months of doxycycline and three months of amoxicillin (total cost, oh, $500??) I got much better. I'm back on doxy now, but I see the light at the end of the tunnel, and I function on a fully normal level despite a few aches and pains that I hope this round of doxy will wipe out... BTW, Lyme often causes mildly positive ANAs that further testing then finds negative for the worst connective disorder/autoimmune diseases. Please, tho, see an LLMD if you're going to get tested. A regular MD is just not good enough. You can always try Lymenet.org if you're interested in learning more about this disease that's been called the "great mimicker." Best to all, Ilona.

     
    Old 05-22-2002, 06:35 PM   #14
    lourehha
    Junior Member
     
    lourehha's Avatar
     
    Join Date: May 2002
    Location: Portersville, PA USA
    Posts: 41
    lourehha HB User
    Post

    Dear ilonaross,
    God Bless you for caring to take the time to reply back to me.I really appreciate the information. My son has lymes. Because of it, he had to have a pace maker. It caused him a lot of heart problems. On the 28th of this month, I too Have to have a pace maker put in. I have positive ana and ana titers, however, nothing else shows up for the autoimmune. So, I asked the family Dr. to run a test for lymes. Just like you said, she ran the western block, and it came back neg.
    I have been on disability because of all the symptoms I have, and it would be impossible for me to work, so needless to say I'm on and HMO health insurance. I'll have to see if the HMO ins. would cover me seeing a lymes specialist. I hope it does with the imput you have given me. A number of years ago I had been bitten and had a very unusual looking dounut red ring around it. My son told me it looked exactly like the bite he had that it turned out to be lymes. But, when my test came back neg. I dropped the issue. Again God Bless you for this information. I'm happy that it was found for you, so you could have the proper treatment, and I'm sorry that you had to go through all the frustration before getting a diagnosis. My prayers are with you for continued healing Good luck! Lourehha
    __________________
    Lourehha

     
    Old 05-23-2002, 04:02 AM   #15
    ilonaross
    Junior Member
     
    ilonaross's Avatar
     
    Join Date: Oct 2001
    Location: new york city
    Posts: 14
    ilonaross HB User
    Post

    Well, I think you have your answer to what your problem is. Please go to Lymenet.org and read the posts. There are a lot of good medical links. There are literally hundreds of people who spent years and years unable to get a diagnosis and whose lives were ruined because of incompetent doctors. The good news is that people can get well eventually with long term antibiotics. The Western blot is well, not basically useless, but pretty close to it... in particular because most doctors don't know how to read it. You see, it says that five bands must be positive for REPORTING purposes; that means that five bands must be positive for it to be reported to the CDC (Centers for Disease Control.) That doesn't mean that five bands must be positive for the person to have Lyme Disease, but alas, most doctors don't make this distinction. I personally had three bands positive, two of which can belong to other bacteria, but one of which is specific only to borrelia, which is the spirochete that causes Lyme. Only an LLMD or a patient who's been properly diagnosed would know this. If you had a donut shaped ring, there is no mystery any more to what you have. If you're stuck in an HMO, your path is going to be a little bit harder, because you're going to have to teach the doctors, and for that you'll have to have a few things: knowledge (see Lymenet and study, study, study the links), patience (doctors are not known for openness to innovation, and are unlikely to seek out certain labs just because you say so, so you'll have to persevere) and diplomacy (no doctor likes to be told he doesn't know what he's doing and hasn't kept up to date on the medical journal articles, and that's what you're going to have to keep putting under their noses, over and over again, until they do it right.) I was fortunate enough to have the money to pay for this stuff out of pocket, because my insurance company doctors didn't know anything about it. I remember taking my tests results, which I got through an LLMD, to the HMO doctor, who looked at the results and said he thought they were negative. I almost burst out laughing, because at that point the LLMD had been treating me with antibiotics for several months and for the first time in a long time I was walking around free of arthritic pains and varous other problems. HMOs are fine for some things, but not for others. Please, get on Lymenet and read, because there are other people who don't have much money and they post their stories. Good luck.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    undiagnosed illness- cant find any info and could do with some help if possible princessgemsie Open to All Other Health Topics 9 11-18-2009 05:34 AM
    Borderline Personality Disorder Coping Skills? Leanne84 Bipolar Disorder 2 07-07-2007 08:45 AM
    Undiagnosed symptoms, please help me! lyndru Fibromyalgia 12 06-18-2005 06:30 PM
    Undiagnosed disease Troy2Slick Open to All Other Health Topics 8 09-14-2004 11:19 PM
    Coping With Depression Caused By Undiagnosed Illness lourehha Open to All Other Health Topics 3 12-02-2003 01:10 AM
    Need Help Coping With Undiagnosed Symptoms lourehha Brain & Nervous System Disorders 13 09-14-2003 04:14 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:29 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!