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Old 10-16-2005, 10:45 PM   #1
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Question I would really appreciate some advice or help.

Hi, this is my first time posting on this board. I guess I should introduce myself. My name is Tom, and I'm from Ottawa, Ontario. I just recently turned 20 years old. For a little more than three years I've been fighting an undiagnosed illness. I have done my part in going to the doctors and specialists and now it's been more than three years and I still am not getting any help. Approximately three years ago I was rushed into the hospital and I was promptly diagnosed with idiopathic thrombocytopenic purpura (low platelets). I was kept in the hospital for about 4 days, I was unable to walk for more than a few minutes and was suffering from pain, fevers and unexplainable fatigue and confusion. I actually thought I was going to die. So here I am a little more than three years later and they have still not found out what is causing my symptoms. The platelet disorder does not make people sick. It is, for the most part, a disease that lacks any real debilitating symptoms, except for the chance of internal bleeding.

For the whole duration of this illness I have been experiencing some symptoms. These symptoms cannot be explained by any doctor I have seen. The symptoms have lasted for three years and have not went away and have only become more intense. The symptoms include fevers, aches and pains, confusion, exhaustion and there are other symptoms but they are less important to me because they dont have such a profound effect on my life. The fevers occur every day and are usually low to medium grade. The aches and pains are painful enough to stop me from walking for more than 5-10 minutes. If I do any type of exercise I tend to feel severe pain for up to 5 days after I do the exercise. It's usually a nagging radiating pain which occurs in all parts of my body. I don't know how to explain it better than that. I also suffer from extreme exhaustion at all times of the day. No matter how long I sleep I never feel like I have rested. This exhaustion is so bad that at time I get very confused and have trouble understanding what people are saying and I often forget many things. I constantly feel like I am in a fog. The symptoms have gotten so bad that I cannot function and live a normal life. I am constantly sore and feverish and I am unable to do simple things like going to school or working. All I want is to just get back to my normal life. I've tried and tried to just ignore my health problems but it doesn't work. They are just too severe for me to handle. I have been going to the doctors frequently to figure out what is wrong and all the tests they do come back negative. A couple of the doctors finally just used asked me if I was depressed or upset about something, and I know they just want to help me, but I was insulted. I can tell the difference between physical illness and mental illness. I think doctors accuse people of being depressed quite often. I know a woman who was feeling ill for over a year and her doctor had told her she was just depressed and it turned out there was something major wrong with her pancreas and she almost died. Anyways, i'm getting off track. I really just want someone to point me in the direction of a doctor who can help me. If they can't figure out exactly whats wrong with me, they should at least help me treat my fevers, pain and if it's possible, the fatigue. It's been such a long time and I'm only 20, I was supposed to go to university and accomplish my goals and eventually do something great with my life. It seems that my dreams have been put on hold while these doctors try to figure out whats wrong. I just can't help but think they aren't really trying to help me. I don't know where to turn or what to do. All I know is that I need someone to figure out a way to treat me and get my health problems under control so I can get back to living a "normal" life.

If anyone can point me in the right direction to a doctor that can help me I would be very grateful. I can't imagine being sick like this for 3 more years. If you are a doctor here is some more info with regards to my health. I am 6'4, 288lbs, I have idiopathic thrombocytopenic purpura, and have been diagnosed with Fibromyalgia by a Rheumatologist, but she has not offered to help me. I don't think her diagnoses was very sound. She didn't seem too sure because my symptoms aren't consistant with that disorder. My mother does suffer from Fibromyalgia though so I could have it as well as another illness.

I would really appreciate some advice on how to find a doctor who will be more compassionate. I've tried everything, bone marrow aspirations, and various other tests, steroids, hormones, and nothing makes me feel better. This partially undiagnosed illness has taken over my life. I cannot go out with friends to a movie, or out to the store to buy some milk with my mom. I try and try and am determined to beat this but I cannot muster up the strength. I am exhausted, run down, feverish, and bleeding from somewhere inside of my stomach or intestines. I get confused and scared of what it wrong at times but for the most part i've been handling it well. All I want is to know what else is wrong. I know I have Fibromyalgia but the fevers and the extreme fatigue and confusion etc doesnt seem to be linked to the Fibro. I feel like doctors have just given up on me. To them, I am just a 20 year old who seems perfectly healthy but to my family, I am very a very sick 20 year old who is rushed into the hospital at least once every 2 months. My family sees whats going on and they understand how severe it has become. I just wish my doctors would understand. I have tried everything short of yelling at them to get them to help me. All i want to know is why I am feeling so sick and if they cannot figure that out, I want some help getting back on my feet. I have a very strong will and as I said before, I am determined to beat this and live a normal productive life. I just need a doctor who will support me, be a friend, and use medication/surgery to aid me in the process of taking my life back from this illness. I know I may never be healthy again, but with help of modern medicine, I could do a whole lot more than I can now.

I live in Ottawa, Ontario. Please contact me by email if you know of any doctors who would be willing to help me. [ please read and follow the posting rules - no emails ] I realize my illness is a mystery and that I may never know what is wrong, but hopefully I will get these symptoms under control. Thanks for taking time to read this, I know doctors are overloaded in Canada but who knows maybe a doctor will see this and lend a helping hand. I am willing to travel to Ontario, Quebec o the U.S.A (depending on cost)to see a doctor. I'm not well enough to drive because I often fall asleep, so my family members would drive me. I am at the end of my rope. I am willing to try anything. I've tried accupuncture, massage, and all sorts of supplements that my doctor reccomended but nothing has improved.
Sincerely, Thomas


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Old 10-17-2005, 06:04 AM   #2
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Re: I would really appreciate some advice or help.

Tom, bless your heart, I'm so sorry you're having to deal with all this at such a young age! A lot of your symptoms do sound like you may have fibromyalgia, so I think you're on the right track.

This fibro. board you've posted on has many great people who will help and support you, so hope you'll keep posting on here!

Please let us know what else we can do to help you. Fibromyalgia is a miserable disease, but there are ways to deal with it to ease and even reverse the pain of it. Hope you'll post again soon!
Blessings,
Carol, TN, KY, NC (depending on where my husband is working!), 57, started 300mg 2xday LA Guai. 6/05, cycling and getting better, sleep apnea, Restless Legs, severe carb/sugar/chocolate intolerant, strict HG Diet...and I'm getting better!

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Old 10-17-2005, 07:09 AM   #3
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Re: I would really appreciate some advice or help.

dear thomas,
welcome my new friend. advice. tall order.
for starters i would find another rheumatologist and get some ongoing care for your fm. just because you do not have all the symptoms does not mean your doc is wrong.
next up i would give some serious thought to seeing a head shrinker. reason i say this is they really helped me adjust to my ever changing body and find a peaceful happy way to continue my life. they offered me a different way of handling my life. my choice, i listened.
i have been doing this for a bit over a decade. there is no magic cure as you already know with mom having fm. you will find your way. we all do. come here anytime you need.
peace,
bluelakelady

 
Old 10-17-2005, 12:05 PM   #4
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Re: I would really appreciate some advice or help.

Dearest Thomas,

You poor thing. I am so sorry that you are struggling so..it is very hard, I know.

I know this is a shot in the dark but have they tested you for Kawasaki disease..(not the motorcycle).. My niece went through something very similar to what you are going through. Luckily the doc she went to was on his toes and sure enough that was it. It is very rare so I do not know if doctors test for it. It is a blood test if I am not mistaken. She had the platelet problem, fevers, fatigue, etc. For her it came out of no where. It is worth a shot and this disease is curable.

See if you can find a doc who works in a teaching hospital associated with a University. These doctors do research and some of them are the best in the country. For example, UCLA Hospital is an excellent research hospital since they are a teaching hospital. You might want to check that out.

Keep your chin up. YOu sound like a very strong willed young man. You are in my prayers Thomas.

Peace and love, Hangin
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"Compassion can help heal our world"

 
Old 10-17-2005, 02:09 PM   #5
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Re: I would really appreciate some advice or help.

Thomas, welcome to our fibro board. I can't help but believe something
more than fibro is going on with your problem. Were you a healthy little boy?
Did this all start after your bout of ITP? I agree with Hangin, you need doctors
who will get to the bottom of your problem even if it takes counseling along the
way. I have grandsons your age and I know the kind of life you want to have.
My prayers will be with you...that's a promise. Please keep us informed.
Bilij

 
Old 10-17-2005, 04:38 PM   #6
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Re: I would really appreciate some advice or help.

Thomas,
You came to the right place to get some excellent advice. I agree you need to find a dr. that will take the time and get to know the severity of the problems. I also think that speaking to someone is a great idea. We have all been through people thinking that it is in our head. But to just talk to someone about everything can be a great release in itself. It doesn't mean that something is wrong with your head, it is just a great way of lifting some of the pressure. Body aches and severe fatigue is a huge symptom of fibro, and it can be so debilitating (I know for a fact), we are here for you, and you are in my prayers
Sincerely, Avrod

 
Old 10-17-2005, 06:44 PM   #7
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Re: I would really appreciate some advice or help.

Hey Tom, Sorry To Hear About Your Problems. From The Sound Of Things You Have Some Of The Symtoms Of Fibro, But Something Else Is Hidden There That The Docs Are Over Looking. Q.......what Kind Of Tests Have Been Taken And What Kind Of Docs Have You Been Seeing. We're All With You In Our Thoughts And Prayers That You Find An Answer.
__________________
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Old 10-17-2005, 08:44 PM   #8
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Re: I would really appreciate some advice or help.

Hello Tom, I'm sorry to hear about your problems but ironically your story sounds pretty much like mine. I'm young, 17, I also have these weird little bouts of who knows what where I end up rushed to the hospital-too dissoriented to walk, can't really talk or stay awake, confused, pain, etc. I'm in the process of being diagnosed, the current thinking is fibro and I will be seeing a rheumy soon (neurologist is sending me there). In the mean time I have been reading up heavily on fibro and I think it is pretty much the cause of all my problems and when I end up in the hospital it is just from a severe flare. It does seem like maybe there is something more there for you (and possibly for me?) because I'd think massage and all that would have helped some if it was only fibro.. question though, what exactly happens to make you end up in the hospital?
Hugs-Kelley

 
Old 10-17-2005, 11:04 PM   #9
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Re: I would really appreciate some advice or help.

Quote:
Originally Posted by kelley_bsb
Hello Tom, I'm sorry to hear about your problems but ironically your story sounds pretty much like mine. I'm young, 17, I also have these weird little bouts of who knows what where I end up rushed to the hospital-too dissoriented to walk, can't really talk or stay awake, confused, pain, etc. I'm in the process of being diagnosed, the current thinking is fibro and I will be seeing a rheumy soon (neurologist is sending me there). In the mean time I have been reading up heavily on fibro and I think it is pretty much the cause of all my problems and when I end up in the hospital it is just from a severe flare. It does seem like maybe there is something more there for you (and possibly for me?) because I'd think massage and all that would have helped some if it was only fibro.. question though, what exactly happens to make you end up in the hospital?
Hugs-Kelley
Yah it's really strange that you go through something similar. You want to know what happens to make me end up in the hospital. Well it's kind of strange, usually I start getting more and more tired until I can't even get out of bed for a period of days, and I get so ill that I barely even know whats going on around me. I get very dizzy, light headed and I just feel like something is majorly wrong. I'm a tough guy and I can tell when something isn't right and these little episodes happen every month or two, but I ignore them now and just try to get through it because the hospital doesn't know how to treat me. They usually keep me overnight and send me home if i'm stable. When it happens I feel like i'm going to die and i'm usually close to passing out from the pain and fatigue and the fevers. So basically, I just start feeling more ill than usual and it gets progressively worse and then i'm brought into the hospital because i'm too weak and tired to function. It usually passes within days and I become more stable. By stable I mean I don't feel like i'm going to die basically. Stable is not exactly very good for me because I feel sick enough all the time. I can't do anything. I try to push myself and my body doesn't cooperate. There is never a time where I feel like I did before I became so ill. It seems to get worse and worse as time goes on. I haven't had a moment of clarity in years, and the pain hasn't stopped for the entire duration of the illness. Just this afternoon I woke up from a mid-day nap and my leg and hip area was hurting so much, I had trouble walking up the stairs. I'm sorry you are so sick. If i could take your sickness away to make you better I would. I just hope you'll find a doctor whos compassionate. It seems doctors in Canada don't really like to deal with people who have pain. It's sad because my mom has a doctor who helps her and tries all sorts of things on her, like injection and all sorts of medications to help her. And my mom is less sick, but she isnt as sick as I am, so I just don't understand why she got help for an illness so fast, and i've been waiting 3 years.

 
Old 10-17-2005, 11:10 PM   #10
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Re: I would really appreciate some advice or help.

Quote:
Originally Posted by HUBBYLUVSME
Hey Tom, Sorry To Hear About Your Problems. From The Sound Of Things You Have Some Of The Symtoms Of Fibro, But Something Else Is Hidden There That The Docs Are Over Looking. Q.......what Kind Of Tests Have Been Taken And What Kind Of Docs Have You Been Seeing. We're All With You In Our Thoughts And Prayers That You Find An Answer.
I have seen about a dozen specialists in the past 3+ years. I have taken all sorts of tests. They have done bone marrow aspirations to check for leukemia, i've had eppstein barr tests done. Also: Lupus, arthritis, diabetes, cancers, addisons disease. And tons more. The doctors have told me that if I had something the tests would show it. They were giving me all sorts of tests, not just routine bloodwork and other general diseases. They did specific things. I also had 3-4 CAT scans, X-rays. I've had ultrasouns on my neck because I have lumps under the skin for some reason and they still say that its okay for me to have these painful hard lumps in my neck. They have done all the necessary tests to find out exactly whats wrong and they haven't found anything. The doctors are just sending me away to other doctors because they can't figure it out, and then my other doctors say it's a mystery.

 
Old 10-17-2005, 11:19 PM   #11
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Re: I would really appreciate some advice or help.

Quote:
Originally Posted by bluelakelady
dear thomas,
welcome my new friend. advice. tall order.
for starters i would find another rheumatologist and get some ongoing care for your fm. just because you do not have all the symptoms does not mean your doc is wrong.
next up i would give some serious thought to seeing a head shrinker. reason i say this is they really helped me adjust to my ever changing body and find a peaceful happy way to continue my life. they offered me a different way of handling my life. my choice, i listened.
i have been doing this for a bit over a decade. there is no magic cure as you already know with mom having fm. you will find your way. we all do. come here anytime you need.
peace,
bluelakelady
I've already seen many rheumatologists. They just don't know what to do with me. They seem like the are stuck. They don't know why I am sick because apparently I am totally healthy even though I have all these problems like the blood disorder, painful cysts, painful hard lumps on my collar bone under the skin, pain, fevers. It's insane, because everytime I go into the doctors they check my temperature and i'm always running a high fever in the morning when they check so they know I am ill and that i'm suffering but they don't do anything. You'd think that having fevers all day and night for years would damage your heart and other organs. It puts alot of strain on the body so i'm just so surprised that they wouldnt at least try to tackle that and give me something to help me reduce my temperature. The only thing I can take for fevers is Tylenol. And I cannot take anything for pain but Tylenol because Aspirin and Ibuprofen and other things like that make me bleed internally. Tylenol doesn't work. I think tylenol is the biggest scam in the world. I don't know why people buy it, it has no effect on pain. I tried that for 3 months because my doctor said it would help and it didnt do anything.

 
Old 10-17-2005, 11:23 PM   #12
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feversandpain HB User
Re: I would really appreciate some advice or help.

Quote:
Originally Posted by bilij
Thomas, welcome to our fibro board. I can't help but believe something
more than fibro is going on with your problem. Were you a healthy little boy?
Did this all start after your bout of ITP? I agree with Hangin, you need doctors
who will get to the bottom of your problem even if it takes counseling along the
way. I have grandsons your age and I know the kind of life you want to have.
My prayers will be with you...that's a promise. Please keep us informed.
Bilij
I was a very healthy little boy, although, I had severe pain from age 8 and on. My doctor always dismissed it as growing pains. I remember my mother would have to massage my muscles to help me sleep when i was around 8 or 9 years old. I also bruised very easily which could indicate that I had the ITP since I was a child. Nice to meet you

 
Old 10-17-2005, 11:28 PM   #13
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Re: I would really appreciate some advice or help.

Quote:
Originally Posted by hangin
Dearest Thomas,

You poor thing. I am so sorry that you are struggling so..it is very hard, I know.

I know this is a shot in the dark but have they tested you for Kawasaki disease..(not the motorcycle).. My niece went through something very similar to what you are going through. Luckily the doc she went to was on his toes and sure enough that was it. It is very rare so I do not know if doctors test for it. It is a blood test if I am not mistaken. She had the platelet problem, fevers, fatigue, etc. For her it came out of no where. It is worth a shot and this disease is curable.

See if you can find a doc who works in a teaching hospital associated with a University. These doctors do research and some of them are the best in the country. For example, UCLA Hospital is an excellent research hospital since they are a teaching hospital. You might want to check that out.

Keep your chin up. YOu sound like a very strong willed young man. You are in my prayers Thomas.

Peace and love, Hangin
I'll ask my doctor about it in 3 months when I see her. Yes i've been waiting 1-2 months already to see her and now I must wait 3 more. And she said I was lucky to get in then because people were waiting up to 9 months to see her. I don't feel very lucky. I think 5 months to see my doctor is a damn shame and i'm not going to pretend i'm lucky because i'm not. Everyone told me this doctor would be different, because she had such a good reputation as a diagnostician and she couldnt figure out what's wrong with me so I'm feeling very discouraged. I'll look up the Kawasaki disease and mention it to her and my hematologist. Thanks so much for responding.

 
Old 10-18-2005, 04:25 AM   #14
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April414 HB User
Re: I would really appreciate some advice or help.

Hi Tom, First, I agree with bluelakelady. If it weren't for my shrink I would have lost a long time ago. Lots of people have troubles and need to see one sometimes. Lots of people with any kind of chronis illness need to see one, on a reg. basis. Chronis illness as you have found out is very draining, on your mind, even on your soul. Chronis illness can help bring on depression too.
Okay, I think also you need to find another arthritis dr and maybe also a pain clinic and maybe some sort of dr. that knows all about blood. Have they checked for apalastic anemia? Maybe you have that and fibro. Alot of what you wrote does sound like fibro doing a really bad flare up. Where is your dr? Reason I ask is I'd try to get in to a university hospital where they ought to know more, be up on all the latest. Plus maybe it wouldn't take as long to find out something being that several dr. could test you for stuff at smae time rather than 1 type dr. test and rule out different things and then so on and so on with each dr.
There are books on fibromyalgia that seem pretty good. I'couldn't tell you the different names right off, but that might help a little.
April

 
Old 10-18-2005, 06:22 AM   #15
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Re: I would really appreciate some advice or help.

good morning thomas,
since you live in canada i am going to assume your medical coverage is similar to englands. let me know if i am wrong. so, on that assumption you really are going to have a time of it getting bounced about. you have already.
we are all born with the body we have. yours has stumped the docs. what have you found in your own research online? when you say high fevers what numbers are we talking about?
peace,
bluelakelady
the moon is full. orion sails into the west. morning comes. no matter how you feel when you wake, the simple fact that you woke up makes this a perfect day. blessings and little hugs from this perfect morning to you.

 
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