tag:blogger.com,1999:blog-344900867722860530.post8443588310921104990..comments2024-01-03T23:52:48.751-05:00Comments on Ask An MD: Mystery Diseases (Diagnosing the Undiagnosable)Doctor Dhttp://www.blogger.com/profile/15967600225173640437noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-344900867722860530.post-63522871192690333932014-12-17T15:45:44.864-05:002014-12-17T15:45:44.864-05:00I have Vulvar Lichen Planus, Enlarged Spleen, Fatt...I have Vulvar Lichen Planus, Enlarged Spleen, Fatty and Enlarged Liver, High Triglycerides, High Platelet Count, High White Blood Cell Count, Depression, Anxiety, Asthma... please someone help me figure out whats wrong with me!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-12624696523361785272014-11-25T15:54:55.361-05:002014-11-25T15:54:55.361-05:00i fell tired all the time
bodies always aching
ey...i fell tired all the time <br />bodies always aching<br />eyes hurt<br />throat fills slightly swollen <br />hot <br />irritatible<br />short temper problems<br />irrgeular heart beat<br />rashes all over my body<br />doctors say my blood shows no signs of anything Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-21771450253903239102014-11-23T17:31:59.354-05:002014-11-23T17:31:59.354-05:00I have been dealing with the same thing for years ...I have been dealing with the same thing for years now. I leave the doctor's office in tears. I've even been called a drug seeker once. And drug seeking I am not. I just want to feel better, and like you, at times death feels like the better option.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-2121019404987894382014-11-23T17:27:27.579-05:002014-11-23T17:27:27.579-05:00Yes, it's comforting to know that you're n...Yes, it's comforting to know that you're not going to die, but suffering through the symptoms makes me think death would be better - especially when the biggest symptom is pain and doctors are terrified of it. I understand all of the social and legal implications behind their fears, however as a patient of chronic pain and an undiagnosed disease I will be the first to say how frustrating this is. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-63259928941303616532014-11-20T15:11:55.839-05:002014-11-20T15:11:55.839-05:00I should clarify that NO comments here will be rea...I should clarify that NO comments here will be read for diagnosis. I really cannot practice medicine via a comment thread, but I'm glad people all over the internet are finding this a useful space to discus their mystery illnesses. Hopefully, writing this will be a useful exercise for articulating your concerns for your own physician.Doctor Dhttps://www.blogger.com/profile/15967600225173640437noreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-59251750833365079372014-11-12T22:52:40.361-05:002014-11-12T22:52:40.361-05:00Oh, I also forgot to mention I have an unexplained...Oh, I also forgot to mention I have an unexplained rash covering my entire body..since March..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-73626388778376499302014-11-12T22:47:21.372-05:002014-11-12T22:47:21.372-05:00I have a mysterious illness.. Here is my story.. F...I have a mysterious illness.. Here is my story.. Five years ago, my daughter was a year old. I started to lose weight. I went from 130lbs to 90lbs. I went to my general practitioner who simply dismissed it as anything serious and said it was probably stress causing the weight loss. Fast forward to a year later, still unable to gain weight, my doctor decided to do a CT scan. The results were normal. He then had the nerve to suggest I was anorexic. I then went to a gastroenterologist who did a colonoscopy which was normal. Well, then another year later my husband found an odd growth on my neck. We went to the local ER and they referred me to an ENT. The ENT did a biopsy and it came back normal. So she decided to surgically remove it to do further testing. The day of the surgery I found out I was pregnant, so the surgery was cancelled. I carried the baby for 3 months and then miscarried. Still very thin and frail. Six months after that miscarriage I got pregnant again in 2013, had the baby in December 2013. I was 145lbs when I gave birth. By January I weighed 90lbs, and started having tremors, fainting, nausea, gagging, numbness, and developed sleep apnea. I went to my general doctor who did a CT scan, said I had gallstones, so they removed my gallbladder in March 2014. The symptoms were getting worse after the surgery, so she referred me to a Neurologist. The Neurologist has done 2 brain MRIs, one c spine MRI, came back normal. She then did a paraneoplastic panel, which came back normal. She did an EMG on both legs which has shown serious neuropathy. She is completely stumped. My symptoms aren't getting better. I now way 78lbs and tremors, shaking, numbness, nausea, vomiting, falling, blurred vision..the list goes on. She said something is attacking my nerves and muscles but doesn't know what yet.. She has referred me to a Rheumatologist so they can try to figure this out. Some days I'm completely bedridden so finding an answer is all I can think about right now.. I'm beyond depressed. I am deteriorating and I feel like I won't ever find an answer until I'm near deathAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-29629412455478027232014-10-31T08:07:52.417-04:002014-10-31T08:07:52.417-04:00If there is anyone at all out there that can help ...If there is anyone at all out there that can help me figure out what is going i.e. worn my body please please please don't hesitate to comment on my post for the sake of my 3 beautiful children.<br />It all started after a severe allergic reaction to an antibiotic which was the 7th trikes on me over a period of 12weeks, now I have vision problems my head feels full and heavy all the time along with aching from my spine through to chest neck jaw nose eyes and skull. I feel as though i'm floating most of the time very forgetful disorientated nauseous out of breathe and sometimes even unbalanced. We as individuals all know our body and know when we don't feel rite in saying that my symptoms have been ongoing for 9 weeks now and like all of you undiagnosed i'm at my Wots end and would really like some help in figuring out what is wrong. Thanks you for the chance to share my story and I hope I get some answers. :( Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-27591859139934398692014-10-21T12:16:42.197-04:002014-10-21T12:16:42.197-04:00OK, I'll ask you doctor? I have been told by o...OK, I'll ask you doctor? I have been told by one of the doctors I have seen the same things you have said in your blog here.<br />I will make this short. I had a high IQ and worked everyday trying to get as much as I could get in a day.<br />After a move in which I did most of the heavy stuff. My arms and hands started to stop working the way my brain wanted them too. Then pain in my elbows. Then massive fatigue and muscle and joint pain. Bedridden with bad dreams waking up every 30-50 minutes. I had weird rahes come and go at least twice a week. Brain function went to roaming around the house trying to remember what I was going to in the room I was in the going back to the room I was in to remind myself and then once again forgetting what I was doing. Just going back and fourth all day and forgetting what I did the day before or the hour even minutes before. Fevers. One rash came all over my body within minutes. Emergency room tested for meningitis with a nope. Did that enough times where I refused to go again. Doctors and doctors and Mri's and all to no avail. After 2 years my wife thought Lyme though I am on the west coast. Doctor tested and it was positive. Sent me to infectious disease guy he did the other test and it too was positive. Picc line for 4 weeks. Back to normal within 3 weeks. 4-5 months later back to where I was all with a 100 to 101 fever. ID doc said CDC guidelines say don't treat again, and he would not. Went to a lot more doc's for close to 2 more years. A Lyme doctor had me on a bunch of antibiotics and supplements. I got a little better then way worse. Really sick for almost 2 years again and was close to dying and so ready for it when my father and stepmother stepped in and found another Lyme doctor and he put another picc line in me. after 5 months I started to get better. Close to death after a year and a half when I went to urgent care and they did a culture staph grew that evening and they hospitalized me for a week with vancomyicin.(sp?) Felt a lot better than I did before. A couple years later to today and I got better for awhile, nothing to write home about and then worse. 2 weeks ago with fevers and cognitive issues I have my buddy the picc line in me once again. I just turned 50. Have been sick for 7 years now. I told my wife who used to work for me but now had to get a job so she could provide myself and our family health insurance that if I don't get better I will go to the Mayo clinic or somewhere like that. UW is the closest university, but they won't touch Lyme. I keep telling my doctors that maybe I don't have Lyme. Since both all three test only show antibodies of the disease maybe I have some other autoimmune disease that is triggering them to work for me.<br />Desperately sincere DudeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-87349357444001661372014-03-19T18:49:17.856-04:002014-03-19T18:49:17.856-04:00I am begging for help for my mother. she just turn...I am begging for help for my mother. she just turned 57 and has been unable to walk for 5 years now and has been completely bed ridden for the past year. NO one I mean no one seems to be able to help and she just suffers. She was diagnosed with Reiter syndrome 32 years ago. but now the doc's are saying that is no longer the problem. But cant say what it is ton of diagnosis have been thrown at us. she has unrelenting pain. Especial in her hips the pain is head to toe with skin is sensitive. she is on a buffet of meds. They have tried everything from epidural injection that didn't help at all, to IV infusions for RA she is allergic to the infusions but they did not help anyway. there is so much more I can say about her and her illness. we just need help there has got to be a way to get her back on her feet or at least with out pain. she has no quality of life.Anonymoushttps://www.blogger.com/profile/01696470831001582527noreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-55947939978195181782014-03-02T10:06:37.230-05:002014-03-02T10:06:37.230-05:00My bf has been sick for months lost weight can hol...My bf has been sick for months lost weight can hold down food lots of visits to bathroom all kinds of tests. No results. No energy no sex drive. Not sure whats wrong. Tell me about ur boys pkz. Thx. LisaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-25069132543577938492014-02-28T09:25:12.542-05:002014-02-28T09:25:12.542-05:00My doctor never had a clue what was going on with ...My doctor never had a clue what was going on with me. They stuck me on different medications guessing that it would help me but they never did a THING!<br /><br />A friend recommended Dr. Ben Gonzalez in silver spring, MD and he found out that I had a fibroid the size of a grapefruit! No other doctor even got close!<br /><br />He wrote an article about what happens when doctors don’t know whats wrong.<br /><br />http://www.atlantismedcenter.com/blog/everything-is-normal/<br /><br />Might help you a little:o)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-83958342055583766402014-02-09T15:47:13.573-05:002014-02-09T15:47:13.573-05:00Hi, Ive had bad abdominal pain and distention for ...Hi, Ive had bad abdominal pain and distention for 1 year now. It has gotten so bad that it now looks like I'm 5 months pregnant and it also hurts to stand up and walk. The only time the pain goes away is when I menstruate and for five day following menstruation. I have only gotten my period 3 times this year. I have tried modifying my diet and it does not make a difference. I've taken hormones and birth control which don't help. I've also gotten MRIs, CT scans, ultra sounds and a colonoscopy all showing nothing. The pain and distention are becoming unbearable. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-53898948774041267712014-01-09T23:48:16.794-05:002014-01-09T23:48:16.794-05:00Hi, I'm glad things worked out for you. I just... Hi, I'm glad things worked out for you. I just have a couple of of questions. What exactly hurt n how old are/ were u at the time? Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-606308698065511602013-11-12T13:59:27.375-05:002013-11-12T13:59:27.375-05:00I really did not find this helpful, in fact I foun...I really did not find this helpful, in fact I found it awful. I am suffering with mystery illness (and have been for a year) at just 17 years old. Im working from home on my Alevels as I'm not fit to be in school, I can hardly get out of the house most days and when I do manage it it's only for very short periods of time. The only thing that keeps me going is the idea of getting better and the possibility of going to uni. If I didn't have the idea that they'll find out what's wrong, I wouldn't be here today.<br />The idea that a doctor will eventually say to me 'you'll just have to live with it' is disturbing, and frankly I wouldn't take it. The truth is that I'm at a stage where I'm either going to get better because of a diagnosis and treatment or end it all. Might sound dramatic but it'd be easier than living like this for another 70years. Posts like this just aren't helpful at all.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-1595840732358445802013-11-06T18:05:46.579-05:002013-11-06T18:05:46.579-05:00Hey, docs, get with it--if you or your wife or chi...Hey, docs, get with it--if you or your wife or child were not diagnosed and you had to see them suffer, you'd damn work harder to find out what it is.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-993703641116181312013-11-06T18:03:39.896-05:002013-11-06T18:03:39.896-05:00I have weird symptoms, have been to numerous docto...I have weird symptoms, have been to numerous doctors and walk out with expensive prescriptions.<br /><br />My stomach - left side feels like a virus in it all the <br />time and it makes me feel so sick on that side. I also have pain in my lower abdomen, and a severe case of nervousness that comes and goes during the day and at night too. I sometimes wake up with it: I've been told I have anxiety, acid reflux, irritable bowel because I have constipation and feel like I have to go but can't, and the doctors humor me and tell me it's because my husband passed away. Yes, I was stressed and still am and grieving about him dying; however, I know this mysterious feeling, etc., are not from that. I had a lot of stress when he was sick and dying, and none of these symptoms. The docs say it is post traumatic stress syndrome and I should go out more. I feel too lousy to go out--only go to store for food, to bank, po to mail things, and that's it--I;m too sick to go anywhere. It drains me, and I am fed up with all the tests, and no answers. This is making me have thoughts of ending my life because I can't go on like this. I hate life, I hate this feeling, and I hate the doctors who don't give a damn about me or anyone they can't diagnose. They went to school, but they know nothing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-59276859640583955522013-10-31T09:27:53.350-04:002013-10-31T09:27:53.350-04:00Have a friend whose reproductive system just died ...Have a friend whose reproductive system just died and now her thyroid has died also within the space of just over a year. Was told adrenal system could go next o=so watching very closely and specialists trying to diagnose--apparently no known diseases that match. Any input?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-14981366199026900152013-10-27T22:18:24.556-04:002013-10-27T22:18:24.556-04:00I have been sufuring for last 6 months ,it started...I have been sufuring for last 6 months ,it started. with geting a strep trought that tienes in to tonsilutis witch gave me a whole crazy kind of symotoms my body lockes up my face hurts and I feel sick my body ichys all over and doctors says its all nyour head you are depresent it makes me so mad Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-31894279784996640982013-10-01T22:50:46.952-04:002013-10-01T22:50:46.952-04:00No, actually there is no profit in cures. There...No, actually there is no profit in cures. There's only profit in illness, postponed death for longer treatment, and drawn out suffering. Drug companies own medicine, hospitals, medical EDUCATION, the chemical they put in your food, GMOs.. They are one and the same group. Your doctor was educated by people who aim to keep you sick for as long as they can for profit. Pharmasiticals. They use to take an oath to cure illness now that oath has changed from CURE to TREAT illness. Don't believe me look it up. Trishahttps://www.blogger.com/profile/15297237450351512753noreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-28336502109658144352013-09-28T22:42:41.132-04:002013-09-28T22:42:41.132-04:00Hi There I have been trying for 18 months to find ...Hi There I have been trying for 18 months to find out what is wrong with me. Two months ago I was told I had sero negative RA and started on immunosupressants and then when I went back a week ago after an MRI I magically don't any more. So I am back to square one and have to start all over again. He admits he has no idea what is wrong with me and they keep alluding that it is all in my mind now. wants me to take antidepressanst but I am sorry I am not depressed and it will not fix the swelling, pain or fatigue. aghhh I have high CRP, ESR and calcium levels, NASH from adverse reactions to medications, low ferritin levels, pain and swelling in a lot of my joints, fatigued beyond belief as the months go on and on and on it goes. I am so frustrated and now I fear I will be fobbed off as they have no idea what is wrong with me. I work full time but it is getting harder and harder as the months roll on in to years. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-48628640739422288392013-09-26T23:00:12.948-04:002013-09-26T23:00:12.948-04:00My husband suffered for a whole YEAR, seeing count...My husband suffered for a whole YEAR, seeing countless doctors and getting many tests done only for the results to come back normal. He feared the doctors were thinking it was all in his head, but it wasn't and they didn't watch him suffer the way I did. NOT KNOWING what was wrong with him was the WORST part about it!<br />Finally, Just a random trip to the dermatologist to get a biopsy of a red mark on his skin (which he has many throughout his body) determined what was wrong with him. The diagnosis: Mastocytosis, or also known as Mast Cell Activation Disorder. This autoimmune disorder is SO rare that no doctors in our town of 60,000 knew a thing about it! Thankfully for us we were close to the Mayo Clinic in Scottsdale, AZ and they were the ones to help get my husband on the right meds (which are A LOT!) and give him more answers about the disorder. We were SO relieved to KNOW what it was and once we did, we could then work on how to manage it. There is no cure....but we can always hope that someday, there will be. emorrillhttps://www.blogger.com/profile/05406592805203717479noreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-72194682222819354722013-09-05T00:14:20.122-04:002013-09-05T00:14:20.122-04:00Hi. I came across this site while looking for answ...Hi. I came across this site while looking for answers for both me and my mom. About 9 years ago I started having numbness and pain in my arms, hands, and neck. After a boat-load of tests all they found was a bulging disc in my lower back. But according to that uncaring doctor it was just a "little bulging disc" that obviously didn't require pain medicine. He gave me Gabapentin but I was taking like 10 of them a day (yes, that was how he prescribed them) and that still wasn't helping so I stopped seeing him and stopped taking the meds. I've delt with the pain since then.<br /><br />But then a couple of years ago I started to have severe pain in the right side of my face. Doctors thought it was due to sinus trouble (because I do have terrible sinus problems). But after two sinus surgeries and still no relief my doc sent me to a neurologist who has ran tests but still doesn't know what's wrong.<br />He prescribed Lyrica which helps alot but I still have to take tylenol and advil every 4-5 hours or I'm back in extreme pain.<br />Another weird thing about it is the pain gets worse if I lay on my right side. I have no clue how that fits into the mix! If I have to, I can deal with the pain my hands and arms but this pain in my face... I need a solution.<br /><br />And my mom survived a severe MRSA infection in her leg but she has some kind of growth on her foot. They've taken samples and tested the area but can't find what's wrong. She's had this for 5 years or so and no one knows what's wrong. She puts antibiotic ointment on it every night and wraps it up which softens the skin but then it dries and cracks when she unwraps it. Her leg and foot swell if she doesn't keep it propted up and her leg is almost always red and swollen. Antibiotics calm that down but never get rid of it.Brittany Millernoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-89878938385125688772013-08-13T22:12:24.402-04:002013-08-13T22:12:24.402-04:00i have had numerous drs. an numerous tests all neg...i have had numerous drs. an numerous tests all neg. i do have lung cancer in remission ,,,i suffer from vertigo, spinal inflammation causing problems with vision walking, spasms weakness in legs an disoriented an headaches ect. severe stiffness in back . i am sensitive to medications. i cant tolerate most. . i am so bad for 12 yrs i have not been living normal i have not been out of my local area in 12 yrs. my quality of life is not good. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-344900867722860530.post-52732451294854414602013-07-31T08:31:33.022-04:002013-07-31T08:31:33.022-04:00I read through most the comments from people looki...I read through most the comments from people looking for answers, and it seems to me that all these people are desperate. Many are not being treated for symptoms, almost all are told it's in their head, and it is beyond frustrating that they have all been relegated to limbo. <br /><br />My brother had weight loss, pain in abdomen, and major diarrhea. He was diagnosed with IBS, gerd, and diabetes. It was pancreatic cancer. They said the tumour was never clear on the scans. So yeah, sometimes the mystery diagnosis can kill you. Now I have the same symptoms. I am pushing the doctors to investigate the cyst on my pancreas but they claim it is too small to cause problems. It is frustrating when doctors don't follow best practices in the medical community.Connie Walshhttps://www.blogger.com/profile/16040034443479045710noreply@blogger.com