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Rare Diseases Community

This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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Avatar universal
52 yr. old white male lost over 100 lbs in 8 months,1,swollen lymph node in groin ,biopsy in 5 nodes no malignancy.complete loss of appitite,extreme fatigue,all major organs look good ,2mm cyst on kidney, no fever, no elevated white bloo...
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Avatar universal
I don't know if I should be concerned but every now and then, I get this pressure in my brain/ head that lasts for only 10-20 seconds, then goes away when I take a deep breath. should I be concerned? This happens at least thrice a month...
  Posted
Avatar universal
please help!? i have this strange burning sensation all over my body for 2 years now it will always be only on the one side of my body it feels like the pain when having flu when your body feels sore, it will only be one spot at a time m...
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Avatar universal
This is a bit long and complicated, but I beg you, please read and help if you can - my life may depend on it. My name is Heather, I'm 24 years old, and I'm currently living in the Washington, DC area. When I was 19, I was diagnosed ...
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Avatar universal
My 3 year old daughter has been vomiting every night at the same time (between 12:30 a.m. and 1:30 a.m.) Then usually again one more time about 1 1/2 to 2 hours later; then she is fine. Upon awakening, she is slightly nausiated, but for...
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Avatar universal
I feel so helpless....wait aND see is not comfortible for me. What do others do? nd
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Avatar universal
My baby had multiple seizures a few hours after birth. His MRI scans showed his brain cells were dying off quickly in multiple areas of the brain, within the span of a week or so. The seizures only went on for a couple days and were able...
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Avatar universal
Her symptoms are Nausea, stomach pain, dizziness, headaches ( these come and go) She is always in pain, her muscles are getting weak ( this is a new symptom) She does have fibromyalgia, she suffers from extreme fatigue. Her mri and mra w...
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Avatar universal
I am a 21 year old female, and I've had constant leg pain since I was little. When I was little I use to always get growing pains in my legs, which I assume is normal, but the growing pains never ended. They went on through Middle, High ...
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Avatar universal
I have muscle spasms, twitches, severe weakness in arms, legs, hands, feet, trouble swallowing, sinus and ear pain, with bladder pain, doc says it's post viral, it's been 3 mos. Nero says mri clear, not much else he can do? could thi...
  Posted
Avatar universal
I was born with Microphthalmia which literally means "small eye" and since birth I've been wearing an artificial eye "prosthetic". I don't know much about this rare eye condition but I kmow that I'm the only one in my family with it. my ...
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Avatar universal
tjq
my right arm and hand are losing muscle and control 2 MRI'S came out negitive neck shoulder and quad chest right side. What could be the cause?
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Avatar universal
I first noticed a slight dent in the inner portion of my right pec muscle about 5 years ago. Today I am missing half of my pec as it continues to deteriorate in the direction of my shoulder. I am 24 years old and I exercise quite frequen...
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Avatar universal
Hello my age is 63, approximately two months back I developed acute abdomen pain, I was diagnosed my gall bladder stones and inflammation in Common Bile duct, I was referred for gall bladder surgery, I should also mention that I am type-...
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Avatar universal
I am searching for answers to a male flushing issue which has been going on for 3 years now. I am a 51 year old male. In shape, blood pressure is always in the normal range (or slightly below). The only other issue I have is some minor d...
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Avatar universal
I had a bug behind my eye and it turned into a worm that was in my veins.it stared behind my eye but it was everywhere, its been about 3 days I missed my dr apt but now I cant feel it. is it eating my brain?
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14810149 tn?1436664593
I have leg pains not sure how to describe it.. The pain only goes away if I push against something like my bed frame when i had a water bed.. and now I use the wall or my partner as long as I put presser on them it stop... The pain is in...
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Avatar universal
Hello and thank you to anyone who reads this! I recently had been hospitalized by my neurologist to help find out whats wrong with me. He ordered for me to go through a EEG, a MRI of my cervical spine and a MRI of my brain. He a...
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Avatar universal
Hi there , I had severe leg pain last night and couldn't sleep too well. The pain was on my upper thighs and my hips. I am a litlle concerned ...it still hurts. Thanks Hope to hear soon from you . Regards
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Avatar universal
For most of my life, I was an athlete. I ran marathons, cross-country, played football and almost all sports. I was always outside, and I did get sweat in my eye sometime, but it was no big deal. When I finished college, I started be...
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