From the article: Why Is Getting A Rare Disease Diagnosis So Difficult?
Many people have symptoms that leave doctors scratching their heads in bewilderment. The symptoms just don't make sense, or just don't go together, or just don't fit any disease they know of. And that's the key: finding someone who does know what your symptoms mean. How did they figure out what you have? How long did it take? Or are you still without a diagnosis?
pain in right groin andright low back an
- i had a acute pain since 2003 sep in right groin low back region.this pain occurs in early morning.But iam surreringsince 2008 jan very bad pain .Now it becomes chronic pain in right low back right leg andgroin area.I done pelvic ,hip,spine MRI scans but all are normaland also done bone scan it is also normal Iam 36 yrs female ad also cons gynac doctor. she done ultra sound that is also normal it becoms undiagnoised problem.But iamsuffering this pain everyday
- —Guest kiranmayi yarra
2 different mystery symptoms
- It all started a 1 1/2 year ago when I had an allergic reaction to a tetnis shot. The 1st symptom is dizziness. I constantly feel like I'm on a boat. Yet, when I have an attack it feels like bed spins and I can't function. I do have ringing in my ears. Have had multiple tests and have been put on many different medications, but nothing helps and they've yet to diagnos me with anything. They've mentioned possible meniere's. The 2nd symptom I thought I was having a heart attack. Numbness in left arm, chest pain, lightheadedness, pressure in the back of the head. Went to cardiologist, had a stress test and they said I was normal. Recently, I caught my daughter's flu. Had fever & chills when that away it triggered my dizziness and my chest pains.They put me on omnicef cause of an infection, but I had a reaction (more dizziness, pressure in head, and shortness of breath and heaviness in chest). They switched me to azithromycyn and had same reaction.Stopped medication Any ideas?
- —sifug
mystery
- I have had stomache pain for 12 weeks i have had so many test and cant find the reason why i really need someone to help me ! im in severe stomache pain i dont no what else to do guylia morrison
- —Guest guylia morrison
Cannot be diagnosed
- I have muscle wasting in one hand and nerve loss in the other. I was exposed to chemiclas for many years. Every diagnosis is wrong. First MMN, CMT, plus many more. They even did surgery. My fingers are dropped and am losing muscle. It is really bad. I have searched the net and read abouy raynaud or lupus. Have seen every specialist -especially neurologists. Cannot find an immunolgist. I live in Miami, Florida. Who can I see?? Living like this is so depressing. This has been going on for two years. I also have numbness in the toe. ALS has been ruled out. Any comments or help would be appreciated. Not sure how blogs work, but if you could email me williamsisland@gmail.com - I would so much appreciate. Lenny
- —kreic45
12 years and counting
- Cant sit at all, can't walk much either. 1200 ML of urine last time was 800. Pain behind tailbone which was removed. Lost 35lbs. Repeated Candidas, stopped hydrocortosone and Candidas stopped. Last visit they said growth in stomach, enlarged liver and shawdow they never have seen. But when they biopsied nothing was there. Activity of anykind makes it worse. Even went to drug rehab because doctors blamed that, they sent me home because I had a medical problem that needed to be fixed first, but they didn't know what, pain is so bad, can't do an;ything anymore. Leg pain, spasms. Had back surgery, ovar;y removed, tailbone. Urine retained at 1200 ML, last time was 800ML, have been desperate for a long time. PLEASE help me and my family. Was a perfectionist and a fighter. Why can't I sit down?
- —Guest dgeeg@aol.com
blackouts
- i have blackouts that are totally random, with no warnings or fits or tongue bitting. my body just switches off for a few seconds and i collapse. when i come round i cant rememeber anything and i feel tired. i have been tested for epilepsy and for heart problems but so far nothing is showing. i have countless lumps, bumps and bruises. its dangerous and i cant be left alone. it happens anywhere whilst i'm standing or sitting without warning and its only for a max of 5-10 seconds and i can have several close together in a short period of time.
- —pinkylynky
Doctors can't find what's wrong
- I need help trying to figure out what is wrong with a young 30yr old man that the doctors can't find what’s wrong with him. These are the symptoms: White blood cells low, Pneumonia, Fever, Vomiting, Diarrhea, Muscle Pain, Joint pain and swelling, And he says he feel like he is burning inside, Liver problems. The doctors that have been seen him have done HIV tests and they came back negative also a Hepatitis came back negative They did a test to see if he had leukemia and it also came back negative. We are desperate, in the hospital they keep sending him back home because they can’t figure out what’s wrong with him. Don't know what to do Please advise.
- —Guest NeedHelp
