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    Old 07-15-2002, 06:47 AM   #31
    mishl33
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    ILONA, i went to see my doctor today and mentioned to him about lymes disease but he said that it does not exist in australia. do you know if this is true?

     
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    Old 07-18-2002, 08:28 AM   #32
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    While these symptoms are gral, there is a defining
    physical thing about lymes disease. The "target."

    If you have a red rash with another red circle around it, that resembles a target... lymes is the culprit.

    Please ask your doctor about lupus. It is common to get facial rashes when exposed to the sun. Furthermore, lupus attacks lots of different parts of your body.

    Blue

     
    Old 07-19-2002, 01:57 AM   #33
    HalleyJ
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    Hi Lourehha, Remember me. I posted earlier when my husband was in the hospital. We got the diagnosis the end of May. He has Acute Disseminated Encephalomyelitis. ADEM for short. A kin desease of MS. It is very rare and is caused by virus or vacination. His immune system was low because of prednisone he was taking for colitis. He has been in intensive therapy (Physical, Occupational, and Speech. Started out 6 sessions per week and now we are down to 4 sessions. Still don't know when or if he will be able to return to work. He had several tests and the only way they were able to diagnose was by doing a brain biopsy. His symptoms were unstable gait, weakness on right side, numbness/tingling in right had and arm. After being dianosed, he developed shingles on entire right arm which added to the discomfort and recovery process. They first did a CAT scan of brain and thought he had a stroke. The MRI showed more lesions then the one that appeared on the CAT scan. All other tests came back normal. They did blood tests, 2 spinal taps, etc. I listed all of this in case others that read it find a clue. I would imagine the symptoms could be completly different depending on where the lesions were on the brain. I was thrilled to see that you got a pacemaker and were feeling a bit better. Take care and God Bless. Halley

     
    Old 07-19-2002, 03:40 PM   #34
    Jaytor
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    To jgates:

    Here's an article on pernicious anemia which lists several causes of VitB 12 deficiency. Often a diagnosis is obtained by ruling out other possibilities.
    [url="http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm"]http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm[/url]

    As you can read in the article below which describes the Schilling test procedure [last updated Feb, 2002], the Schilling test is available or at least the National Institutes of Health thinks it is.
    [url="http://www.nlm.nih.gov/medlineplus/ency/article/003572.htm"]http://www.nlm.nih.gov/medlineplus/ency/article/003572.htm[/url]


    [This message has been edited by Jay Tor (edited 07-19-2002).]

     
    Old 07-20-2002, 04:42 AM   #35
    mishl33
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    to blue,
    thanks for your suggestion about lupus. my doctor said i do not have lupus because my ana test came back negetive. i do have have many symptoms of lupus but my immunologist still says no. all my doctors say that they have no idea what is wrong with me except that something is going on with my immune system and we may never actually find out what it is. they are just hoping it will go away and say that there is nothing else that they can do but i am desperately trying to search for an answer. do you have any other advise or suggestions as i am not getting anywhere with my doctors here in australia.
    thanks for taking the time to reply.

     
    Old 08-07-2002, 10:34 PM   #36
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    HI EVERYONE, I missed being able to be here with all of you, but finally I'm back. I was worried that you all would think I had forgotten about you. But that wasn't the case. Instead, I had a relapse and was rushed by ambulance to PRESBY. Hosp. At Presby. the doctors felt I had another stroke, and secondary to my condition of the stroke, they felt I have MS. They gave me a spinal tap while I was there, and it came back negative. They felt I had MS because of the lessions that were on my MRI. Now, we are back to square one again. They also outruled Chairi, but so many of my symptoms sure matched.
    They were great with me at PRESBY. They paid close attention to my symptoms, and didn't make me feel like a hypochondriac.
    I have fought very hard to get my strength back well enough to return to you all. Please know how much I value my friendship here with each and everyone of you. We all have to be strong for each other. We are survivors no matter what. Right! Knowing we are not alone we can do it, by praying for each other, sharing our tears, and even laughter when we are able.
    I'd also at this time like to thank the Health board for allowing me to have this website. I wonder if the HealthBoard is aware how much it has meant to us to be able to all be here for each other.
    And my dear friends Halley, Tina and Michelle, I will be getting back to each of you individually in the next few days, as I continue to get a little stronger. Know I was very happy to return home from the hospital to receive your messages, and you are in my prayers.
    God Bless you all. Lourehha

    [This message has been edited by lourehha (edited 08-08-2002).]
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    Old 08-08-2002, 12:59 AM   #37
    HalleyJ
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    Lourehha, Sorry to hear you've had such a rough time. Glad you are back. What my husband has (ADEM)is a kin to MS. All of his tests came back negative too. Have they suggested a brain biopsy? His treatment was 3 days of intervenous steriods and decreasing dose of prednisone when he got home. He is still in 3 therapies and has not returned to work yet. Write when you have the time and energy. Halley

     
    Old 08-11-2002, 03:50 AM   #38
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    once again, i urge some of you to go to lymenet and study the messages and literature there. undiagnosed lyme disease can be fatal, although it usually isn't, and people who put their faith blindly in doctors need to remember that a) doctors are not scientists; they're tradespeople, and now they're at the beck and call of other forces b) even if they can resist those forces, and even if they really care about keeping up with the latest science journal articles, which most don't, the number of articles published each month, one of which might contain the information that would be the key to your diagnosis, would eat up all their time and then they wouldn't have time to practice c) only a fraction of the microbial diseases that afflict mankind have been identified, their causes discovered beyond a shadow of a doubt, and a definitive cure on the market. caveat emptor. you have to do literature research yourself. i speak from some experience. in my immediate family i have a thoracic surgeon, an internist, a psychiatrist, a pathologist, and another internist. back to my area of knowledge, lyme and ttp... oh, and by the way, no doctor ever suggested that i see a lyme specialist. despite being laid up in the hospital for two months and in icu part of the time, for that matter, it was my own personal research on the internet and in the literature that led me to seek out an infectious disease expert specializing in tickborne diseases, and finally, i found my diagnosis and at least a partial cure. all the quack quacks who saw me in the hospital assured me i had no infectious disease causing my symptoms. back to some stats on lyme.. only half of all people with lyme have a bullseye rash in the initial stages. i personally had a big bug bite, about twice the size of a mosquito bite, which i attributed to a spider or a horsefly bite, and to this day i have no idea whether it was a so-called "bullseye" rash. if you read the messages on lymenet, you'll see that lesions showing up on the mri, ms-like illnesses and other neuro symptoms are topics that all pop up frequently as red herrings on the way to a lyme diagnosis. as for ana tests, i believe, but i do not know for sure, that a negative lupus test really means you don't have lupus. you would need to do a search for false negatives. yes, there's lyme in australia. just go on the lymenet board and seek out the messages from the posters in australia. however, i'm not sure whether they contracted it in australia. as for testing to rule out lyme, the best, but still not 100 percent sure way, is to have a PCR test at a lab that specializes in Lyme. if you have a western blot, you need to ask the doctor which lab, which bands came back positive, and then you need to know for sure whether those bands are specific to borrelia or not. at the most conservative lab (ie not going overboard on the lyme dx) where i've been tested, quest via stonybrook, band 58 on the igg came back positive, and band 58 is specific only to borrelia. nothing else can cause this band to be positive. other bands came back positive, but they are non-specific. now, don't expect most doctors to know these things. they don't. expect most doctors to say you need five bands positive, because that's what the cdc requires for reporting purposes, if they even say that much, or read the test results that closely. reporting purposes are not the same as diagnostic purposes, but insurance companies like to keep that quiet because long term antibiotic use can run into the hundreds of thousands of dollars. i could go on with more boring details. based on your posts, none of you has really ruled out lyme disease. you may have had more detailed conversations with the md's that you're not posting, but based on the posts here, i am inferring, perhaps incorrectly, that you're all accepting your doctors' words at face value without ascertaining whether you've simply had an elisa test (worthless for lyme) or what bands have come back positive on the western blot and whether they're igg or igm and how sensitive is this particular lab's test for lyme. i suggest you go to lymenet and spend a couple of hours wading through the journal articles they keep archived. it's a lot of work, but you may hit paydirt. best, ilona.

     
    Old 08-11-2002, 04:27 AM   #39
    ilonaross
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    Doctors' Dilemma By Edward L. McNeil MB BS MD
    The West Nile Virus is spreading as every day we hear of new cases and people dying from the disease.
    It is not the only infectious disease that is spreading and is killing people although it does not kill quickly nor dramatically enough to be considered newsworthy. The health authorities are justifiably worried about cases of BSE (Bovine Spongiform Encephalitis)in cattle and other animals, that has plagued some European countries but has now been identified in the US. BSE is the source of Creutzfeldt-Jakob disease in humans that destroys the brain. Unlike West Nile Virus, it takes many years before symptoms appear at which time there is no effective treatment for it and the patients die.
    Other diseases, far more common, spreading rapidly and expected to infect one-half million people within the next few years, come from being bitten by a tick, a mosquito or a flea. They are commonly known as tick-borne diseases, the one most well known being Lyme disease (Borrelia burgdorferi or its variant strain).
    When Lyme disease was first recognized in Connecticut, the majority of the victims were infected by a single germ subsequently called Borrelia Burgdorferi, after Dr. Burgdorfer who identified it.
    Unfortunately, most of those who have been bitten by a disease-carrying tick can now be infected with more than one disease from a single bite. One is Ehrlichia, another is Borrelia burgdorferi, and Babesia which is a malarial cousin and gives similar symptoms to malaria. The three mentioned organisms are not the only ones that can infect from the same bite, as these organisms depend on the geographical area from which they came. These diseases are not only prevalent in the USA but are found in every European country, Scandinavia, the Balkans and as far away as Australia.
    Ticks are great travelers. They can catch a ride on a plane or a bird. They can be carried from one country or continent to another, attaching themselves to humans or their luggage. The disease they carry can be transmitted by blood transfusions and from mother to fetus, an infected fetus more likely to abort and, if born, to be diseased and die at an early age.
    The doctors' dilemma is they have been told early treatment with a short course of an antibiotic, usually Doxycycline, will cure Lyme disease. This may appear to be so but such treatment will not guarantee a recurrence will not occur, months or years later, without a further tick bite. This is especially so if more than one pathogen was in the bite.
    That is not the only dilemma faced by the doctors because many of the blood tests to indicate Lyme disease are unreliable. A patient with negative results can be told they do not have Lyme disease when they indeed do. Treatment is then denied and the patients sentenced to an advancement of their disease(s) to a chronic form with increasing disability and death. Sadly, it is not unusual for patients to see 10 to 15 different doctors before a diagnosis is made. This is pplicable to both the USA and the UK.
    Diagnosis has to be made by taking a complete history of symptoms and physical signs elicited by a thorough examination, especially of the nervous system. For treatment to ameliorate some of the disabling symptoms, a prolonged course of antibiotics is necessary. Such treatments have shown success when prescribed by physicians specializing in the treatment of the tick-borne diseases and who have personally treated more than 5000 cases. Those who consider prolonged courses of antibiotics are harmful do not seem to apply the same judgement to other infectious diseases, such as Tuberculosis or AIDS, or to the use of prolonged courses of antibiotics for young people with acne.
    A lot of expensive research is being done regarding what happens at the cellular level in the tick-borne diseases, but until repeatable, accurate tests are available to identify which pathogens are infecting a particular patient, research to show the effectiveness of particular treatments, is futile. Until that time, doctors are justified in diagnosing the tick-borne diseases clinically and empirically, treating with long-term antibiotics, judging the response over months rather than days. Long term exhibition of antibiotics is less likely to cause resistance to the antibiotics than short courses.
    After penicillin with the advent of the antibiotic age, many considered we had conquered infectious diseases for good. How wrong they were. Emerging and changing infectious diseases now present an awesome challenge around the planet. In the fight against the harmful germs, we have not begun to win and great losses are to be expected. We may consider humans smart but the microbes have shown themselves to be even smarter in this present age.
    [This message has been edited by Lou B (edited 11 August 2002).]

     
    Old 08-13-2002, 08:03 PM   #40
    Kathy Boss
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    I am new to this message board and as a matter of fact this IS my first time to log on.I just saw my 13th DR. today and have had a rash that has spread over my entire body including now the eye ball itself since Jan 02.I started out with a bad cough 7-01 & various things has happened since then. What they call pantic attacks, waking up 3-4 times a night and empting my bladder, very very weak and tired all the time,chest pains, wheezing.I just had a MRI that shows 2 non-specific leasions on my brain.The CT came back good and an xray of my lung's showed to be good.The dx of my skin rash is Granuloma Annulare.However, when I read about this,it does not fit me.The rash does not look like what is on the net, it is not suppose to be common to the face and scalp & my rash has few bumps to the joints as GA suggest's is the main spot.I will check the Lymenet.org. This was mentioned in the beginning, but I guess blood test ruled it out. I live on the border of Mexico and wierd things seem to happen.I also do not experiance fevers at all. From reading about other people with GA the bumps spread over the years. In 8 months my rash has covered at least 50% of my body. Any help would be appriciated.
    Thank you!

     
    Old 08-19-2002, 11:39 PM   #41
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    Trapped
    A prisoner I am, within my very own skin.
    A prisoner I am, who may never be able to win.

    A prisoner I am who feels the burning, freezing- the strife.
    A prisoner I am who had to say goodbye to a normal kid life.

    A prisoner I am, oh how tired I have become.
    A prisoner I am, for now everything in my life is numb.

    A prisoner I am, will I ever be free?
    A prisoner I am, I miss the old, fun and energetic me.

    A prisoner I am, forced to watch the world through eyes of pain.
    A prisoner I am, who must start all over, with what to gain?

    A prisoner I am, fighting a losing fight.
    A prisoner I am, like a child who cannot sleep through the night.

    A prisoner I am, lost in the great furious sea.
    A prisoner I am, longing to be pain free.


    -Jill


    Do You Know Her?

    Her life was changed over night,
    Her story would start to unfold, nothing went right
    Do you know her?

    No longer full of energy, no room to be happy,
    Everyone was in shock, everyone was so sappy.
    Do you know her?

    It started as a simple procedure, no need to worry.
    They should have seen the doctor was in a rushed hurry.
    Do you know her?

    He thought she was lying, kids donít have pain.
    He made her feel as if she was going insane.
    Do you know her?

    No longer able to do the things she used to,
    Everything takes her all, everyday sheís always so blue.
    Do you know her?

    Behind her smiles, behind her tears,
    Behind her are, her short pain free and happy years
    Do you know her?


    -Jill

    My Jumbled Thoughts
    Star light; star bright, first star I see tonight. I wish I may, I wish I might, I wish my wish will come true tonight. Did you ever stop to think how pointless wishing on a star is? Through the eyes of science, when looking at the sky, you are looking back in time. A star you may have wished upon could already have faded and died, but yet the light has just reached us here on earth. We look up at the night sky in amazement and wonder, but what we really are doing is looking in the past. Looking at stars and comets that have already happened. So really, what youíre doing is looking back on your life and what has happened in a different sense. And when I do so, I canít see the fifteen years that were happy and pain free. I see the never-ending puzzle that has so many pieces that donít fit or have been lost. God, it was never supposed to be like this......
    ...To the man that I hold responsible. I cannot bring myself to hate you, even though that is the one thing I really would love to do. If I saw you lying on the street in need of help, I would help you, no questions asked. However, my forgiveness to you and what you have done is no where to be found at this point in time. Some day, far down the line, I may be able to forgive, but I will never, ever forget how you made my life nothing but a living hell. Iíll never get over it; Iíve only gotten used to it.


    A few things that I happened to have in one of my files. I am not the "I"s in any of it but I do know the person who is. Just thought I'd share with some of you.


     
    Old 08-23-2002, 08:03 PM   #42
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    Hi Tina, I finally made it back. I've been terribly ill again, and that's why I haven't been able to get back to you sooner.
    I wish to thak you so much for sharing with us what all you have been put through. And every time I start getting discouraged I read your letter again. I wonder if you truly do realize how everything you have been put through is such a marvelous strength for others. I am so so sorry for all the suffering you have had. And to think your faith remains strong. I'm sure to the Lord you are a Saint. I value our friendship, and thank the Lord for your openess and willingness to share your experiences. Have you ever thought to write a book. I know it would be difficult to do when you are suffering so much, but please do consider it.
    The Doctors have now narrowed some of my problems down to MS or CNSvasculitus. Its a matter of determining which to be able to treat it. Plus, lately I've been having more heart problems again. Somehow I have peace and comfort from the Lord, inspite of my own fears. Does that make sense. Perhaps you have experienced what I'm trying to say.
    Well, Please keep me posted. I'll be watching for you, and praying for you. God Bless you for posting. You are truly an inspiration. Lourehha

    ------------------
    Lourehha
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    Old 08-23-2002, 08:25 PM   #43
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    Dear Michelle, Thank you for sharing with us about yourself. I am so sorry all you are going through, and to think you are so young to be suffering so much. Its difficult for me to imagine. It isn't difficult to imagine, however, what you are going through with the medical community, and the mental health community. You are not Alone, and I hope that it helps for you to know that you're not. I know it did help me to find it out. Don't let any phychiatrist try to convince you, your problems are in your head. Their not. Their real. Of course your depressed. Your physically ill -- that makes you depressed -- it does anyone. It's interesting how psychiatrists expect physically ill people to deal with the unkown, when they themselves can't give any advice, except to try to convince the patient that their problem is in their head. WOW! What you need to do is ask your psych. to give you advice on how to cope with your physical problems. I have been in the process of working on coping skills for my daily living,as I feel my life has been put on hold as I once knew it. One thing that has helped me is to do short term projects my goal right now is to accomplish one a day. Something simple. It does help me if I'm able to keep my mind preoccupied, with something, because I can't think of two things at one time, and during that time I'm not thinking about how much I hurt, or how afraid I am. Try it. Let me know if it helps you. I'll be praying for you. Don't give up. Lourehha
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    Old 08-23-2002, 08:34 PM   #44
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    Dear Haley, Thank you so much for letting me know how your husband is coming along and sharing his diagnosis with us so we can learn. Along with my heart condition, doctors are also trying to determin if I have MS, or cnsv, so I have a lot more brain tests coming up. They were sure I had MS, until it didn't show up in my spinal tap. Lately, I have been quite ill and that's why I couldn't get back to you sooner, but I was so happy to hear from you. Please keep me updated when you're able, as I continue to keep you and your husband in my prayers. It was great to hear from you. God Bless Lourehha
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    Old 08-23-2002, 08:39 PM   #45
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    Dear Haley, Thank you so much for letting me know how your husband is coming along and sharing his diagnosis with us so we can learn. Along with my heart condition, doctors are also trying to determin if I have MS, or cnsv, so I have a lot more brain tests coming up. They were sure I had MS, until it didn't show up in my spinal tap. Lately, I have been quite ill and that's why I couldn't get back to you sooner, but I was so happy to hear from you. Please keep me updated when you're able, as I continue to keep you and your husband in my prayers. It was great to hear from you. God Bless Lourehha
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