Discussions By Condition: Autoimmune Disease

autoimmune disease

Posted In: Autoimmune Disease 26 Replies
  • Posted By: Anonymous
  • June 12, 2006
  • 04:27 PM

What a group of disease! Apparently, I have several. It's very difficult to understand the "overlap" of this group of illnesses. I do know I have a SKY HIGH SED RATE. It's 135. WAAAAAAAAY over the norm. I have lots of symptoms but not definitive diagnosis. Last Call was Sogrens Sydrome with Lupus "overlap." There's that word again. Another doctor says Mixed Connective Tissue Disease. Very frustrating and darned little can be done about any of the possibilities. Just venting I guess.:confused:

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26 Replies:

  • I have celiac disease that imitates several diseases, have you ever been tested fro celiac sprue
    Anonymous 42789 Replies Flag this Response
  • i hear ya,auto immune disease is 1 among many they say i have,as well as arteriovenous malformation on my brain and left ventricle heart dysfunction and now poss ms,definetly understand your frustration.ever wanna chat katherine_rose27@hotmail.com
    Anonymous 42789 Replies
    • August 11, 2006
    • 06:57 PM
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  • I would look into a bacterial infection for any of the auto-immune conditions.Start with c.pneumoniae and the the mycoplasims.The thing about these bad germs is they will get anyone who has a poor diet.Not many veg's or fresh greens and too much dairy and no pro-biotics which keep your first line of defence(digestive track)poorly protected.One good site if you had upper respro. infection shortly before the other symtoms started is www.asthmastory.com.Then go to http://www.davidwheldon.co.uk/ms-treatment.html. I wish you luck and the courage to stay the course of seeking your health.Our species didn't come out of more than 2 millions of years to evolve an immune system to attack itself.When I explained my thoughts to my doctor he cut me loose as I was deemed non-compliant.Now that I have regained most of my health back I am glad I went out on my own.I could only have gotten worse under the hmo I was seeking treatment from.The drugs for lupus,arthritis and asthma will cause terrible damage yet atibiotics can cause trouble too.Be careful and get some quality food and knock off the processed poison.That david weldon site does give some guidelines but www.lef.org is a better site for getting eating tips.I only hope to live long enough to go to the funeral of my doctors so I can have the last laugh. :D
    Anonymous 42789 Replies
    • August 27, 2006
    • 04:46 PM
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  • Diagnosing autoimmune diseases is not easy. Any blood work usually is not definitive. Just because a result is positive, doesn't mean you have one. Likewise, if its negative, that doesn't mean you don't have it. There are some conclusive tests that are not blood work; depends on the disease. I have Sjogren's Syndrome, no positive blood work - even my sed rate is usually normal. My Dr. (a rhumetoligist) diagnosed me based on systms: dry mouth, dry eyes, fatigue, connective tissue pain. Hopefully you can find a good doctor that can match you sysptoms with the cause or causes. Obvisuly if you have more than one, it makes it that much harder. rats, there is no spell checker. i'm too tired to correct the errors manually. good luck. i'd be more than happy to talk with you more.
    rock666 4 Replies
    • October 14, 2006
    • 08:00 AM
    • 0
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  • What a group of disease! Apparently, I have several. It's very difficult to understand the "overlap" of this group of illnesses. I do know I have a SKY HIGH SED RATE. It's 135. WAAAAAAAAY over the norm. I have lots of symptoms but not definitive diagnosis. Last Call was Sogrens Sydrome with Lupus "overlap." There's that word again. Another doctor says Mixed Connective Tissue Disease. Very frustrating and darned little can be done about any of the possibilities. Just venting I guess.:confused:Hi I was just surfing the internet looking for some information and seen your post . I just wanted to suggest maybe sarcoidosis the one marker for this disorder is sedrate.. I have sarcoid so I am familar with this a bit and I also was always told that it is a sister diease to lupus ..just a thought karen
    Anonymous 42789 Replies
    • October 21, 2006
    • 00:52 PM
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  • any prosthetic parts or implants of any kind?if so, maybe siliconosis
    Anonymous 42789 Replies
    • October 31, 2006
    • 03:21 PM
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  • Arent Autoimmine diseases a "kick in the pants". :( IF they can figure out which one. For me they've switched to Sarcodosis, from asbestosis, to collagen vascular disease, rheumitoid lung, scleraderma, sjorgrens. The only one ther are sure of is Hypersensitivity pneumonitis. I think they have a roulette wheel hiden in their offices they use to DX so they don't have to admit they don't have a clue!!! :rolleyes: I've stopped depending on "Specialists" to treat me. I'm focusing on eating right, raw green foods (or slightly steamed), non acidic fruits and sprouted nuts & legumes and excersize for treatment. I'm returning to alternative health help for assistance with pain and difficulty with movement. Best of luck to all. I hope you find you way and make sure to be an advocate for yourself - because no one else will.:cool:
    Anonymous 42789 Replies
    • November 12, 2006
    • 07:03 AM
    • 0
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  • My husband has relapsing polychondritis. Also had a very high sed rate prior to starting treatment. Have your reumotologist look into this one. You never know.Fig
    Anonymous 42789 Replies
    • November 27, 2006
    • 06:42 PM
    • 0
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  • A high sed rate is a marker for inflammation. It could be anywhere in your body. Tell us some more about your symptoms...
    Anonymous 42789 Replies
    • November 27, 2006
    • 09:24 PM
    • 0
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  • Could be Lyme Disease and /or Co-infections...It can cause alot of the immune malfunctions and misdx's, because the bacteria hides so well, all over the body. Many people never get a rash or mark, so they don't know they had a bite from a tick, they just keep getting sicker. Getting the right Dx and treatment can be maddening. Many have been told they have Sarc, lupus, fibro, even ms, but eventually it was found to be lyme. There is no cure, but more treatment options, than just antidepressants as they do with fibro. Many of the "overlap" symptoms are a mystery and many match Lyme. Do a google search on it. Good Luck & Best wishes.
    Anonymous 42789 Replies
    • January 2, 2007
    • 11:14 AM
    • 0
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  • Arent Autoimmine diseases a "kick in the pants". :( IF they can figure out which one. For me they've switched to Sarcodosis, from asbestosis, to collagen vascular disease, rheumitoid lung, scleraderma, sjorgrens. The only one ther are sure of is Hypersensitivity pneumonitis. I think they have a roulette wheel hiden in their offices they use to DX so they don't have to admit they don't have a clue!!! :rolleyes: I've stopped depending on "Specialists" to treat me. I'm focusing on eating right, raw green foods (or slightly steamed), non acidic fruits and sprouted nuts & legumes and excersize for treatment. I'm returning to alternative health help for assistance with pain and difficulty with movement. Best of luck to all. I hope you find you way and make sure to be an advocate for yourself - because no one else will.:cool: Loved your post funny but true......
    Anonymous 42789 Replies
    • January 30, 2007
    • 00:47 PM
    • 0
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  • I have been seeing a Rheumatologist for a few years now. Several different dx's. Anklyosing spondylitis, RA, FMS, and so on. ANA is positive and SEd rate is slightly elevated. Painful joints, swollen and stiff fingers mainly after rest. In 2002 was hospitalized with numbness and eye pain on left side. Had Bells Palsey 9 years ago. Had JRA and a child. Muscle running down my back seems to be getting stiffer. Causing mid back and neck pain. I've had three low back surgeries for herniated discs. And that brings me to the lastest symptoms...strange sense of smell that wakes me from a sound sleep. It isn't always the same. Sometimes it smell like something is burning and other times like coffe that has sat out for a awhile. Now left ear is hurting and feels clogged. I need help and I give up the Doctors. Any thoughts?:(
    tclouse 2 Replies
    • January 30, 2007
    • 08:14 PM
    • 0
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  • I would look into a bacterial infection for any of the auto-immune conditions.Start with c.pneumoniae and the the mycoplasims.The thing about these bad germs is they will get anyone who has a poor diet.Not many veg's or fresh greens and too much dairy and no pro-biotics which keep your first line of defence(digestive track)poorly protected.One good site if you had upper respro. infection shortly before the other symtoms started is www.asthmastory.com.Then go to http://www.davidwheldon.co.uk/ms-treatment.html. I wish you luck and the courage to stay the course of seeking your health.Our species didn't come out of more than 2 millions of years to evolve an immune system to attack itself.When I explained my thoughts to my doctor he cut me loose as I was deemed non-compliant.Now that I have regained most of my health back I am glad I went out on my own.I could only have gotten worse under the hmo I was seeking treatment from.The drugs for lupus,arthritis and asthma will cause terrible damage yet atibiotics can cause trouble too.Be careful and get some quality food and knock off the processed poison.That david weldon site does give some guidelines but www.lef.org is a better site for getting eating tips.I only hope to live long enough to go to the funeral of my doctors so I can have the last laugh. :D The David Wheldon website is fascinating. Thanks for posting. Although he discusses MS, I would think that the same ideas might apply equally well to other autoimmune diseases, especially those known to occur in clusters with MS. But where would you ever get the longterm antibiotic treatment? Did you do that? Yes, I agree with eating a better diet, but is that all you did, or did you have other treatment? Please post!
    AgnosticJaz 23 Replies
    • October 6, 2007
    • 05:14 PM
    • 0
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  • Diagnosing autoimmune diseases is not easy. Any blood work usually is not definitive. Just because a result is positive, doesn't mean you have one. Likewise, if its negative, that doesn't mean you don't have it. There are some conclusive tests that are not blood work; depends on the disease. I have Sjogren's Syndrome, no positive blood work - even my sed rate is usually normal. My Dr. (a rhumetoligist) diagnosed me based on systms: dry mouth, dry eyes, fatigue, connective tissue pain. Hopefully you can find a good doctor that can match you sysptoms with the cause or causes. Obvisuly if you have more than one, it makes it that much harder. rats, there is no spell checker. i'm too tired to correct the errors manually. good luck. i'd be more than happy to talk with you more.Ive had autoimmune suggestions on symptoms thrown at me for years, tests come back inconclusive, ive had rashes alergies arthritis pain but now im at the stage im having internatal problems too. a heart attack with heart failure being the worrying one.., bone pain, and what i try to describe as an internal rashm sore and itchy inside ...im going nuts. My mother was celiac with addisons disease and a slew of autoimmune stuff and she died from malasorbation... every marker they have on this lupus board i have...how come i cant get diagnosed and get regarded by my dr as a cronic complainer..............i finally much ado am going to see a lupus specialist in december...what do i do? unload all my complaints? sit quiet and let him hopefully find them?? im worn out with this. any info would be appreciated..
    Heartsore 14 Replies
    • October 22, 2007
    • 06:02 AM
    • 0
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  • Ive had autoimmune suggestions on symptoms thrown at me for years, tests come back inconclusive, ive had rashes alergies arthritis pain but now im at the stage im having internatal problems too. a heart attack with heart failure being the worrying one.., bone pain, and what i try to describe as an internal rashm sore and itchy inside ...im going nuts. My mother was celiac with addisons disease and a slew of autoimmune stuff and she died from malasorbation... every marker they have on this lupus board i have...how come i cant get diagnosed and get regarded by my dr as a cronic complainer..............i finally much ado am going to see a lupus specialist in december...what do i do? unload all my complaints? sit quiet and let him hopefully find them?? im worn out with this. any info would be appreciated.. Definitely tell him your problems. If you sit quietly, s/he will NOT find them. Most doctors can't find them if you rub their face in it. Also, call that lupus doctor's office now and tell them what a terrible time you're having and ask if they can please get you in sooner - they are almost sure to have a cancellation before December and can at least put you on a list of people to be called. Good luck!
    AgnosticJaz 23 Replies
    • October 22, 2007
    • 11:06 PM
    • 0
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  • Thanks a bunch....im going to take your advice tomorrow and call.....Ive lost confidence i think because theres so much going on and my family dr im sure thinks im a cronic complainer...specially as some of the complaints i have although they do show up dont make sense....i'll let ya know what happens tomorrow..^5
    Heartsore 14 Replies
    • October 23, 2007
    • 01:04 AM
    • 0
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  • Thanks a bunch....im going to take your advice tomorrow and call.....Ive lost confidence i think because theres so much going on and my family dr im sure thinks im a cronic complainer...specially as some of the complaints i have although they do show up dont make sense....i'll let ya know what happens tomorrow..^5 OK, and don't forget you can always change doctors. Well, maybe that's not so easy for people in HMO's, but it doesn't sound like you're in one of those, or you probably wouldn't be seeing the lupus doctor. Keep posting!
    AgnosticJaz 23 Replies
    • October 23, 2007
    • 04:05 AM
    • 0
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  • Im in Canada so medically i should be able to pick and choose drs, but unfortunately theres a shortage of drs in this area so im sorta stuck with the family dr.. and getting past him to see a specialist is like breaking into a bank.....Because i have the heart condition i think if i arrived in his surgery with my left foot in my hand he'd go hmmmmmmmmmm hearts the problem...!! anyways im going to do as you say tomorrow and see what happens..
    Heartsore 14 Replies
    • October 23, 2007
    • 04:11 AM
    • 0
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  • Im in Canada so medically i should be able to pick and choose drs, but unfortunately theres a shortage of drs in this area so im sorta stuck with the family dr.. and getting past him to see a specialist is like breaking into a bank.....Because i have the heart condition i think if i arrived in his surgery with my left foot in my hand he'd go hmmmmmmmmmm hearts the problem...!! anyways im going to do as you say tomorrow and see what happens.. Ha! That sounds about as smart as most M.D.'s in the states. There's a lot of controversy down here as to whether we should go over to a system like Canada's. We're told that Canadians wait months to see a doctor, but often we do, too, and we never know whether any particular doctor will even bill Medicare (the government insurance for old folks), or whether Medicare will pay if billed, or whether our own private insurance will pay, or how much we'll be stuck with paying out of our own pocket. It's a big complicated mess. We're also told that we get better care than Canadians or Europeans do, but I'm not convinced of that. Please explain about "getting past" your family doctor to see a specialist. Do you have to have a referral? If so, that would be like the "HMO" type of insurance here. If we buy that kind of plan, we have to get the general practice person's permission to see a specialist, which is why I don't buy HMO insurance. I'd be really interested in hearing what it's like to live under the Canadian medical system, from the viewpoint of someone who knows from experience. Anyway, I wish you luck on getting an earlier appointment. How far would you have to travel, if necessary, to see a different specialist? (I did drive over 500 miles to get diagnosed - over 1,000 miles round trip - and it was well worth the trouble.) Just do whatever it takes to take care of yourself. You're in a battle, so fight it!
    AgnosticJaz 23 Replies
    • October 24, 2007
    • 00:16 AM
    • 0
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  • My husband has relapsing polychondritis. Also had a very high sed rate prior to starting treatment. Have your reumotologist look into this one. You never know.Fig How was he diagnosed with it ? I have one doctor that thinks my daughter has it... Thanks
    Anonymous 42789 Replies
    • October 24, 2007
    • 01:49 AM
    • 0
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