Discussions By Condition: I cannot get a diagnosis.

what would you say is the rarest disease in the world?

Posted In: I cannot get a diagnosis. 96 Replies
  • Posted By: Anonymous
  • December 18, 2006
  • 02:31 AM

I am writing a novel and need to know what you think is the rarest and most difficult disease to diagnose. It is even better if this disease can imitate several other diseases.

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96 Replies:

  • Celiac disease.it imtitates many other possible stomach, neurlogical, and other conditions.I heard one story from a doctor friend of mine where a man thought he was developing alzhiemers (sp) and he tested him for celiac and it came back postive. So he put him on a gluten free diet and all his symtoms went away.You can have so many symptoms varying from chronic fratigue to just an ulcer. This would mean people would think they where just suffering from stress or depression. Celiac disease would be a good suggestion!! =) good luck
    Anonymous 42789 Replies
    • December 18, 2006
    • 03:25 AM
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  • True, but Addisson's disease affects far fewer people and the symptoms somewhat mimic Celiac. It is not usually diagnosed until the skin turns a bronze color--summer and winter.We knew my daughter had Celiac but the Addisons went on for years until she had a full blown crisis and was minutes away from death.
    Anonymous 42789 Replies
    • December 18, 2006
    • 04:37 PM
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  • Gilligans something disease??? No sure of the full name. Just found out a 13 year old (friends daughter) was doing gymnastics at school, got tingling in her foot and now is paralyized on her entire right side of body in a coma. Happened immediately. Noone around here has ever heard of this so its one to add to your list anyway. Good luck.
    Anonymous 42789 Replies
    • December 18, 2006
    • 07:22 PM
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  • True, but Addisson's disease affects far fewer people and the symptoms somewhat mimic Celiac. It is not usually diagnosed until the skin turns a bronze color--summer and winter.We knew my daughter had Celiac but the Addisons went on for years until she had a full blown crisis and was minutes away from death.With the Addisons did she ever have apurple pigmintation in her skin?? Like poor circulation??I have celiac disease now and have awful circulation and turn purple. I am curious if Celiac is linked to Addisons!!!!
    Anonymous 42789 Replies
    • December 19, 2006
    • 02:56 AM
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  • ADDISON'S DISEASE!!!!I posted on here too yesterday. I was thinking I might have a Kidney problem (of course the Nephrologist ruled that out---he said my blood tests, Ultrasound & CT scan came back fine). Then I was thinking that I might possibly have Addison's disease (or even Celiac---I also just had surgery for Endometriosis). I am guessing that I have some sort of Autoimmune disorder (especially with all my symptoms that I am having) but I do not know what & I do not have time to go to every doctor in the world & miss lots of time from work for them to find out what is wrong.I have these spots all over my body. I have always had them & I get more & more as I get older. It is like hyperpigmentation. I have looked at all the pictures of hyperpigmentation on the net but nothing matches up to what I have. It is like birthmarks. I do not go outside or in the sun alot because I am tired all the time. About 6 months ago I got another one of these marks that just appeared on my neck. Everyone asked what it was. I told them that I get them all the time & I do not know what caused it.
    Anonymous 42789 Replies
    • December 21, 2006
    • 04:36 AM
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  • I have been suffering chronic groin and lower back pain since 1993 after an injury fromdoing lawn work. I have been to 13 physicians that included my PCP, three urologists,twochiropractors, two orthopedic surgeons, a new PCP, pain clinics for nerve block injectionsand presently at the Institute for Rehabilitation and Research Center. This is where I finally got help. The physician that I first met took care of my pain w/ narcotics. ( The onlything that helped) He thought the groin pain was referred from a back injury and may be permanent. To get to the point...he left to practice in Fla. I agreed to stay with whoever tookhis place. A very young doctor, upon meeting me for the first time, looked at my file askeda few questions and said, " This looks like a rare disease that's very hard to diagnos if you're not familiar with it." He sent me for x-rays and MRI (which I already had a few yrs.back) and he got it!!! AVASCULAR NECROSIS (AVN) or Osteonecrosis (ON). Bone Death!After hearing, STD, prostititis, urethritis, disc disease and others. It took so long to figure out that,my hips had collapsed. Just replaced the right side 11-15-06. The only disease more painful is bone cancer. There are many stories like mine at avnsupport.org and other info you might find useful. Please consider this for your story, we are trying to get thishorrible disease some attention. It's rare and interesting...check out some stories of victims at the support web site, PLEASE. Funny thing...my hips never hurt!
    remedy13 24 Replies
    • January 2, 2007
    • 04:42 AM
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  • porphyia is also a fairly rare disease..causing symptoms from severe abd,muscle,bone pain,severe nausea,possible paralisis when untreated(including inability to walk or breath)chemical intolerances,serious drug intolerances,phychiatric disorders of all kinds..some forms of the disease make exposure to sunlight a life threatening situation...it is extremely hard to dx as test results r often falsely negative..if u r interested to learn of the very real hardships experienced by people with porphyria go to the porph group found on yahoo groups..many r labeled as hypochondriacs even by their close family members,as well as drug seekers by dr's,or put in psych wards due to psychotic behavior..hope this helps..it is a real life horror story for many..good luck!! re: the previous post...i am so sorry to hear of your suffering..i also suffer severe pain due to porph,should u need someone to help u cope when u feel u cannot go on,please email me..i wish you all the best!! God Bless...Sincerely,Shebie_672@yahoo.ca
    Anonymous 42789 Replies
    • January 2, 2007
    • 08:34 AM
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  • Morgellons.
    jeff88 15 Replies
    • January 4, 2007
    • 04:08 AM
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  • Morgellons.NO, that's just the most intergalactic! Mucopolysaccharidosis!
    Anonymous 42789 Replies
    • January 4, 2007
    • 04:10 AM
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  • I simply answered the question posted (which did not ask for my opinion on the validity of the disease).
    jeff88 15 Replies
    • January 4, 2007
    • 05:34 AM
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  • porphyia is also a fairly rare disease..causing symptoms from severe abd,muscle,bone pain,severe nausea,possible paralisis when untreated(including inability to walk or breath)chemical intolerances,serious drug intolerances,phychiatric disorders of all kinds..some forms of the disease make exposure to sunlight a life threatening situation...it is extremely hard to dx as test results r often falsely negative..if u r interested to learn of the very real hardships experienced by people with porphyria go to the porph group found on yahoo groups..many r labeled as hypochondriacs even by their close family members,as well as drug seekers by dr's,or put in psych wards due to psychotic behavior..hope this helps..it is a real life horror story for many..good luck!! re: the previous post...i am so sorry to hear of your suffering..i also suffer severe pain due to porph,should u need someone to help u cope when u feel u cannot go on,please email me..i wish you all the best!! God Bless...Sincerely,Shebie_672@yahoo.caThat's very thoughtful! I forgot to write in subject line, I hope you open it.
    remedy13 24 Replies
    • January 4, 2007
    • 09:04 AM
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  • antiphospholipid antibody syndrome!!!
    Anonymous 42789 Replies
    • January 4, 2007
    • 11:53 AM
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  • Lyme disease usually goes undiagnosed or misdiagnosed for a very longtime. Check it out on the web. The signs and symptoms mimic everything under the sun. A simple blood test is definitive, but rarely done. My dog was diagnosed with it a few years ago. We've been to all the same places. I probably have it. I've nearly given up on the medical community (I am an RN!). I must agree the the Addison's comments you have gotten are right on. I recently found out I have almost no adrenal hormones in my system. I have had all of the symptons of Addison's for years, except the bronze skin tone. I would say that of all of the specialists...Endocrinologists are the worst when it comes to missing red flags. They jump in right before you drop dead, and then expect a standing ovation on the obvious.
    Anonymous 42789 Replies
    • January 14, 2007
    • 10:52 PM
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  • Some of those must really be rare I have not heard of a few of them. Maybe go on various sites of those illnesses and see the statistics. I have interstitial cystitis and not alot of people heard of theat but today it is more common than before i was diagnosed. maybe the statistics might be helpful. maybe plug it in the search engines and see what comes up. It is amazing how so many people on here suffer from an array of diseases that an average person would not even dream possible and so many of them have really no definative treatment. Its a shame that more resources are not put into action to help all of us. Good luck curious to see which one is the rarest. :rolleyes:
    nccarol28732 44 Replies
    • January 15, 2007
    • 00:16 AM
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  • Heres a rare one Wallenberg's Syndrome is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Wallenberg's Syndrome, or a subtype of Wallenberg's Syndrome, affects less than 200,000 people in the US population.
    nccarol28732 44 Replies
    • January 15, 2007
    • 01:17 AM
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  • a good database on the rarest diseases http://www.rarediseases.org/search/orglist.html maybe it will help with your bookanother site said progeria is the rarest
    nccarol28732 44 Replies
    • January 15, 2007
    • 01:23 AM
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  • I do not know if you would classify Endometriosis as a rare disease (especially since they are learning more & more about it every day) but it is a disease that goes undiagnosed in women for years.
    Anonymous 42789 Replies
    • January 15, 2007
    • 02:57 AM
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  • human kindness.
    Anonymous 42789 Replies
    • January 15, 2007
    • 10:51 AM
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  • Yes interstitial cystitis was on the list of the rarest diseses so was irritable bowel which i was surprised Parkinsons too which all have been around while. Maybe its ones too that are hard to diagnose or not alot of succesful treatments. i am gonna check that site out more looked interesting. I listed it my post above.
    nccarol28732 44 Replies
    • January 15, 2007
    • 01:10 PM
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  • Hi, what about Sjogrens Syndrome? It's not a rare complaint, but it is extremely hard to get a diagnosis, takes years before one finds out , It can also mimic other complaints too...See this wonderful site that is run by people who are sufferers.. They give some excellent advice and also a shoulder to cry on.. www.sjsworld.org Hope this helps.. Dee..
    Anonymous 42789 Replies
    • January 16, 2007
    • 03:44 PM
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