Discussions By Condition: I cannot get a diagnosis.

Vague/Widespread symptoms, getting worse. Help!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • March 9, 2011
  • 10:41 PM

I am a 24yo female. I have been passed around from doctor to doctor, with no diagnosis (meaning no way to treat me), and I keep getting worse. I have had a few of these symptoms since I was 15, most for the past three years, with new ones cropping up yearly.
Have been to two neurologists, a psychiatrist, two ENTS, and several primary care physicians. About ten CBCs along with iron serums, thyroid tests, liver function tests and B12 tests. 3 MRIs (since I was 15), and 3 nerve conduction studies. No results.

Symptoms include: severe hemicranial migraines that are constant one year and disappear the next, they make me vomit and unable to keep down medicine. No Rx has ever worked, although butalbital was helpful in a pinch to ease the pain. Worsening vision, just keeps getting blurry, I blink constantly to try to focus. Fluttering noise in right ear, no cause, sounded like a helicopter. It has come and gone over the years. Now I have objective pulsatile tinnitus, ENT found no cause. It's constant in my left ear, and is driving me mad. I can't sleep because it's so loud. Cognitive problems showed up around 2007 (memory loss, no focus) and was diagnosed as ADD. It has since gotten much worse, I slur words and stammer, can't finish sentences, and when I try to write (a passion of mine for a long time) I find myself either mispelling or using the wrong word altogether. I have a problem with word choice when I speak as well. At 15, along with the migraines, I started noticing muscle control problems in my left hand. Can't move a few fingers independantly of each other. I rarely use my left hand now. I drop things, and if I'm holding a remote or something I 'll randomly push a button with no thought or reason behind it, like my hands have a mind of their own. They found no problems on conduction study. Now I'm experience the same problem in both hands. The impulsive movement in fingers is so frustrating because I can't control them when I want to. I use my index fingers and thumb for must things now. I had a small patch of something that appeared on my knee for a month. I had my dermatologist look at it during a routine exam. She said it might be eczema and to put some steroid cream on it. That didn't make it go away, but didn't hurt it either. Afterwards, I kept going to my PC doctor for frequent bouts of flu-like symptoms minus the stomach upset, most muscle weakness and severe fatigue. He guessed that I was just picking up something viral, and would give me shots of steroids. Then I had an episode at work that scared me into action. I was a benefit analyst for a large office, and that was when I first started noticing the odd lightheadedness. It happened every time; If I bent down for a second to replace a chart, I felt like I was floating upon standing. One day at work while I was typing I noticed something like hives on one of my knuckles. It soon spread to my opposite hand and arm. I felt extremely dizzy, my face was very read, I began talking out of my head. Someone checked my blood pressure, and it was very low. (I've always had a normal or low BP, and anytime I feel like I have a fever, my temp is barely 98.6, so low body temp too I guess.) A co-worker drove me home, as I was unable to drive myself. I went to the doctor the next day. It seemed like an allergic reaction, which made no sense since I have no allergies and was doing nothing abnormal. Plus, I had often had itchy joints or hands at home and in my old home, which ruled out environmental causes.
He gave me a shot and put me on a two-week cycle of Prednisone. At the end of two weeks, I still felt sick and weak. Shortly after taking the last prednisone, the patch on my knee that the derm thought might be eczema spread all over my lower body. I went back to the doctor, and he gave me another shot and and sent me back to the dermatologist. Since this was obviously not eczema (they were patches of tiny red pin *****s, which resembled red bruises up close) she biopsied a patch on my hip and sent it off. She gave me another two weeks of steroids. The biopsy was inconclusive, but she mentioned that they thought it looked like Schamberg's Disease, which is only a description in and of itself with no cause or treatment. My regular doctor and I both agree that it is petechiae, leaking from my blood vessels. The steroids never made it better, only made it change color. The original patch that started it all is still visible on my knee, always there. Some weeks I'll notice new patches in odd places, but not as bad as that episode. My mom, who is an RN and aware of all my symptoms, asked me to go have a work-up done for MS. She even told me that, for some reason, she had always known someone close to her was going to have it. This scared me, of course. After this I went back to see my neurologist because my cognitive problems were progressing at such a rate that my adderall no longer had any effect on me; I often felt like I hadn't even taken it. He said I had position vertigo, and tinnitus, and sent me to another ENT. After numerous tests, the ENT said I had no vertigo, and instead had lightheadness or dizziness caused by something other than my inner ear. In fact, I threw up during every part of th vertigo test. It was like torture! He didn't seem too concerned with the sound in my ear, though he told me it was nothing caused by anything on his end. I had done a lot of research (because the noise drives me up the wall), and I asked him to listen to it with his stethoscope. He did it after some hesitation and confirmed that he could hear it. I told him I could make it stop by applying pressure to my artery. He suggested that it was something wrong with my blood flow, and wrote up a report for me to take back to my neurologist.

I feel so hopeless. My neurologist is very dismissive (he's been that way since I told him that my migraines--which had made me so sick--had disappeared on their own.) I feel like I'm not being taken seriously, although its obvious that something is wrong to everyone around me. I can barely function. For the past two weeks I have felt so depleted, my muscles are fatigued, my arms ache from holding up my toothbrush. My cognitives problems are so bad that it took me 12 hours yesterday to get through a 50 question study guide for Calculus. I'm not joking -- 12 hours. The symptoms come and go. The only things experience to some degree everyday are the deafening noise in my left ear, the hand problems, and the cognitive problems. But they only seem to get worse, never better. I can track the worsening of my symptoms by the drastic changes in my grades. I already had to drop a semester because I had two seperate bouts of something the doctor said was "the walking flu" and then a variation of "the swine flu" that conveniently never shows up on tests. I keep trying to get through school, but it's becoming impossible. I can't write papers, I went from perfect scores in calculus to 40/100 scores. It takes me so long to do things, and it seems like I can't grasp anything that I didn't know 4 years ago. Learning new concepts is impossible.

The ENT mentioned that he couldn't believe the neurologist didn't send me to have an angiogram or something, after I described the noise to him. Apparently it can be indicative of everything from benign tumors to intercranial pressure, and can even be a symptoms of damaged brain parts and things like MS.

I want to have this test done, as it seems the most pressing symptom at the moment (though this noise in my ear makes me so depressed and suicidal at time), but I want to find a new doctor. I am unsure if I need to see an internist or what, but my neurologist is a no-go. Depending on my diagnosis, I may have irrepairable neurological problems because he chose to ignore my "weird, vague symptoms" (his words) and sent me to a psychiatrist to be treated for ADD with adderall while I've been getting worse for the past three years.

If anybody has any insight or advice, or shares some of these odd symptoms, I would be so grateful. I want to be as educated and informed as possible when I see my doctors, so that I'm not just given a dx of fibro and sent on my way.

Reply Flag this Discussion

7 Replies:

  • My prayers are with you. Have some of your symptoms but others of my own. The ear fluttering happens when I try and listen to someone. I've been to so many doctors too. Fibromyalgia they say, but nothing that helps most of the symptoms. I hope you are able to get some relief. {{hugs}}
    Anonymous 42789 Replies Flag this Response
  • I think you should demand a cranial mri if you haven’t had one already. Lots of different things could cause the symptoms you're describing and a brain scan of some form is about the only way to make a diagnosis.regards. (this is not medical advice)hope for your quick recoverypgc
    Pgc2020 5 Replies Flag this Response
  • Hi. If you need my help to clarify your diagnosis, please contact me by email:alltimatehelp (at) hotmail (dot) com
    alltimatehelp 128 Replies Flag this Response
  • I wanted to first say u r not alone, i know it feels that way, i too experience a lot of what u r saying. The whole ear thing does drive me mad to put of insanity..before i go in to my story was wondering if u have been to an immunologist?I am a 24yo female. I have been passed around from doctor to doctor, with no diagnosis (meaning no way to treat me), and I keep getting worse. I have had a few of these symptoms since I was 15, most for the past three years, with new ones cropping up yearly.Have been to two neurologists, a psychiatrist, two ENTS, and several primary care physicians. About ten CBCs along with iron serums, thyroid tests, liver function tests and B12 tests. 3 MRIs (since I was 15), and 3 nerve conduction studies. No results.Symptoms include: severe hemicranial migraines that are constant one year and disappear the next, they make me vomit and unable to keep down medicine. No Rx has ever worked, although butalbital was helpful in a pinch to ease the pain. Worsening vision, just keeps getting blurry, I blink constantly to try to focus. Fluttering noise in right ear, no cause, sounded like a helicopter. It has come and gone over the years. Now I have objective pulsatile tinnitus, ENT found no cause. It's constant in my left ear, and is driving me mad. I can't sleep because it's so loud. Cognitive problems showed up around 2007 (memory loss, no focus) and was diagnosed as ADD. It has since gotten much worse, I slur words and stammer, can't finish sentences, and when I try to write (a passion of mine for a long time) I find myself either mispelling or using the wrong word altogether. I have a problem with word choice when I speak as well. At 15, along with the migraines, I started noticing muscle control problems in my left hand. Can't move a few fingers independantly of each other. I rarely use my left hand now. I drop things, and if I'm holding a remote or something I 'll randomly push a button with no thought or reason behind it, like my hands have a mind of their own. They found no problems on conduction study. Now I'm experience the same problem in both hands. The impulsive movement in fingers is so frustrating because I can't control them when I want to. I use my index fingers and thumb for must things now. I had a small patch of something that appeared on my knee for a month. I had my dermatologist look at it during a routine exam. She said it might be eczema and to put some steroid cream on it. That didn't make it go away, but didn't hurt it either. Afterwards, I kept going to my PC doctor for frequent bouts of flu-like symptoms minus the stomach upset, most muscle weakness and severe fatigue. He guessed that I was just picking up something viral, and would give me shots of steroids. Then I had an episode at work that scared me into action. I was a benefit analyst for a large office, and that was when I first started noticing the odd lightheadedness. It happened every time; If I bent down for a second to replace a chart, I felt like I was floating upon standing. One day at work while I was typing I noticed something like hives on one of my knuckles. It soon spread to my opposite hand and arm. I felt extremely dizzy, my face was very read, I began talking out of my head. Someone checked my blood pressure, and it was very low. (I've always had a normal or low BP, and anytime I feel like I have a fever, my temp is barely 98.6, so low body temp too I guess.) A co-worker drove me home, as I was unable to drive myself. I went to the doctor the next day. It seemed like an allergic reaction, which made no sense since I have no allergies and was doing nothing abnormal. Plus, I had often had itchy joints or hands at home and in my old home, which ruled out environmental causes.He gave me a shot and put me on a two-week cycle of Prednisone. At the end of two weeks, I still felt sick and weak. Shortly after taking the last prednisone, the patch on my knee that the derm thought might be eczema spread all over my lower body. I went back to the doctor, and he gave me another shot and and sent me back to the dermatologist. Since this was obviously not eczema (they were patches of tiny red pin *****s, which resembled red bruises up close) she biopsied a patch on my hip and sent it off. She gave me another two weeks of steroids. The biopsy was inconclusive, but she mentioned that they thought it looked like Schamberg's Disease, which is only a description in and of itself with no cause or treatment. My regular doctor and I both agree that it is petechiae, leaking from my blood vessels. The steroids never made it better, only made it change color. The original patch that started it all is still visible on my knee, always there. Some weeks I'll notice new patches in odd places, but not as bad as that episode. My mom, who is an RN and aware of all my symptoms, asked me to go have a work-up done for MS. She even told me that, for some reason, she had always known someone close to her was going to have it. This scared me, of course. After this I went back to see my neurologist because my cognitive problems were progressing at such a rate that my adderall no longer had any effect on me; I often felt like I hadn't even taken it. He said I had position vertigo, and tinnitus, and sent me to another ENT. After numerous tests, the ENT said I had no vertigo, and instead had lightheadness or dizziness caused by something other than my inner ear. In fact, I threw up during every part of th vertigo test. It was like torture! He didn't seem too concerned with the sound in my ear, though he told me it was nothing caused by anything on his end. I had done a lot of research (because the noise drives me up the wall), and I asked him to listen to it with his stethoscope. He did it after some hesitation and confirmed that he could hear it. I told him I could make it stop by applying pressure to my artery. He suggested that it was something wrong with my blood flow, and wrote up a report for me to take back to my neurologist.I feel so hopeless. My neurologist is very dismissive (he's been that way since I told him that my migraines--which had made me so sick--had disappeared on their own.) I feel like I'm not being taken seriously, although its obvious that something is wrong to everyone around me. I can barely function. For the past two weeks I have felt so depleted, my muscles are fatigued, my arms ache from holding up my toothbrush. My cognitives problems are so bad that it took me 12 hours yesterday to get through a 50 question study guide for Calculus. I'm not joking -- 12 hours. The symptoms come and go. The only things experience to some degree everyday are the deafening noise in my left ear, the hand problems, and the cognitive problems. But they only seem to get worse, never better. I can track the worsening of my symptoms by the drastic changes in my grades. I already had to drop a semester because I had two seperate bouts of something the doctor said was "the walking flu" and then a variation of "the swine flu" that conveniently never shows up on tests. I keep trying to get through school, but it's becoming impossible. I can't write papers, I went from perfect scores in calculus to 40/100 scores. It takes me so long to do things, and it seems like I can't grasp anything that I didn't know 4 years ago. Learning new concepts is impossible.The ENT mentioned that he couldn't believe the neurologist didn't send me to have an angiogram or something, after I described the noise to him. Apparently it can be indicative of everything from benign tumors to intercranial pressure, and can even be a symptoms of damaged brain parts and things like MS.I want to have this test done, as it seems the most pressing symptom at the moment (though this noise in my ear makes me so depressed and suicidal at time), but I want to find a new doctor. I am unsure if I need to see an internist or what, but my neurologist is a no-go. Depending on my diagnosis, I may have irrepairable neurological problems because he chose to ignore my "weird, vague symptoms" (his words) and sent me to a psychiatrist to be treated for ADD with adderall while I've been getting worse for the past three years.If anybody has any insight or advice, or shares some of these odd symptoms, I would be so grateful. I want to be as educated and informed as possible when I see my doctors, so that I'm not just given a dx of fibro and sent on my way.
    Anonymous 42789 Replies Flag this Response
  • have you been tested for celiacs disease? look it up, check the symptoms, i think you will be suprised. worth the test i think.
    pamjay 8 Replies Flag this Response
  • It could be due in part to side effects of Adderall. I was taking Zoloft for almost a year and then started developing debilitating symptoms. If you have some of the following it may be from the Adderall. "Do not give up", keep pushing until you get it resolved, no matter what. My sister had been suffering for a long time, many failed treatments and she finally diagnosed her own Lime Disease and was 95 percent better within 6 weeks. My mom had been misdiagnosed for years and it turned out she had Lupus. I had severe migranes come and go for years. I figured out what several doctors did not. I had an alergy to walnuts. That simple. You have to be your own advocate. Fight for your health the same if you were fighting for your child if they were suffering. Fight, push, change doctors, what ever it takes!Side Effects of Adderall:---------------------------All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Adderall:Constipation; diarrhea; dizziness; dry mouth; headache; loss of appetite; nausea; nervousness; restlessness; stomach pain or upset; trouble sleeping; unpleasant taste; vomiting; weakness; weight loss.Seek medical attention right away if any of these SEVERE side effects occur when using Adderall: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); blurred vision or other vision problems; change in sexual ability or desire; chest pain; confusion; fainting; fast or irregular heartbeat; fever, chills, or sore throat; new or worsening mental or mood problems (eg, aggression, agitation, anxiety, delusions, depression, hallucination, hostility); numbness or tingling of an arm or leg; one-sided weakness; painful or frequent urination; red, swollen, peeling, or blistered skin; seizures; severe or persistent headache; severe stomach pain; severe weight loss; shortness of breath; sudden, severe dizziness or vomiting; slurred speech; uncontrolled muscle movement; unusual weakness or tiredness.This is not a complete list of all side effects that may occur.
    Anonymous 42789 Replies Flag this Response
  • It could be due in part to side effects of Adderall. I was taking Zoloft for almost a year and then started developing debilitating symptoms. If you have some of the following it may be from the Adderall. "Do not give up", keep pushing until you get it resolved, no matter what. My sister had been suffering for a long time, many failed treatments and she finally diagnosed her own Lime Disease and was 95 percent better within 6 weeks. My mom had been misdiagnosed for years and it turned out she had Lupus. You have to be your own advocate.Side Effects of Adderall:•hives; difficulty breathing; swelling of your face, lips, tongue, or throat;•fast, pounding, or uneven heartbeats;•feeling light-headed, fainting;•increased blood pressure (severe headache, blurred vision, trouble concentrating, chest pain, numbness, seizure); or•tremor, restlessness, hallucinations, unusual behavior, or motor tics (muscle twitches).Less serious Adderall side effects may include:•headache or dizziness;•sleep problems (insomnia);•dry mouth or an unpleasant taste in your mouth;•diarrhea, constipation;•loss of appetite, weight loss; or•loss of interest in sex, impotence, or difficulty having an orgasm.This is not a complete list of side effects and others may occur.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.