Discussions By Condition: I cannot get a diagnosis.

Please help me.

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: michellem
  • January 8, 2008
  • 05:28 AM

Hello.
For the past ten months now, I've been going back and forth to different hospitals and doctors, trying to find out what is wrong with me. I just turned 18 years old in mid-June, and no doctor has any ideas as to what is wrong, much less how to cure me.

In early March 2007, I had symptoms of what appeared to be a common cold (coughing, head congestion, etc.). Of course, I brushed it off. By the end of March, I lost the vision completely in my right eye. I began having awful headaches, nosebleeds, and tingling in my hands and feet. I went to The Mayo Clinic in Jacksonville, Florida, and they insisted on optic neuritus, though my optic nerve was not swollen. I was given multiple MRIs, and they all came back clear. I was given a spinal tap in mid-April, which showed that my pressure was borderline high. The doctor gave me Diamox for the pressure. I began throwing up everything I ate and drank, had a yellow tint to my skin, and the headaches, tingling, and nosebleeds were still persistent, as well as the symptoms of the cold. The doctor assumed it was just side effects of Diamox, so he took me off it. I still kept throwing up, and proceeded to gain over 50 pounds, which no doctor could explain. I've been to multiple eye doctors, and all of them have told me my eyes are healthy. I got my vision back in mid-May, and it came back 20/20. I've always worn glasses, so that came as a shock. In early June, my right eyelid began drooping on occassion, just randomly. I could not close it or open it, it just stayed half-closed for a few hours. My vision in the right eye went away again in early July, just to come back in August. I haven't had any more trouble with loss of vision, but my eyelid does still droop once every two weeks, for a few hours. I had another spinal tap done in November, and the pressure is even higher. No doctor has given me any answers as to what is happening, and it's been ten months since this all started. I've gotten a few new symptoms over the past few months, which I will list altogether. I hope someone can give me an idea as to where to turn now, and possibly what to ask the next doctor about.

Nosebleeds (heavy, occuring at least twice a day)
Headaches (almost as bad as migranes, just light doesn't bother me)
Tingling/numbness (occurs mostly in hands/feet, sometimes legs/arms/neck/back)
Drooping eyelid
Vomiting (every night, no matter what gets eaten; tried acid reflux pills, which did not work)
Yellow tint to skin (happens about twice a month, lasting a few days)
Weakness (some days I don't have the strength to get out of bed, or even sit up)
Back/neck pain (sharp pain, occurs randomly; turning head/neck different ways does not effect when the pain will occur)
Coughing/head congestion (I find it hard to imagine a common cold could last ten months...)
Blotchy skin (this occurs every few days, with no apparent cause)
Fainting (this happens when I'm out in the sun for more than ten minutes, which never happened before; not dehydration, I make sure I have plenty of fluid; temperature does not effect fainting)
Trouble remembering things (I've never had this problem before; I find it hard to remember almost everything, so I must write things down; I've never heard of an 18 year old with memory loss)
Fever (about twice a week I get a fever which lasts for hours)

If you have any ideas, I would really appreciate the help! I don't know how to deal with this, or what the next step is. I've only gotten worse since this started, and it's been highly frustrating.
Thank you.
Michelle

Reply Flag this Discussion

13 Replies:

  • Sounds like an auto-immune problem. Have they evaluated you for MS?Optical coherence tomography can detect it fairly early. For the jaundice, look up Gilbert's syndrome.
    rad-skw 1605 Replies
    • January 8, 2008
    • 11:10 AM
    • 0
    Flag this Response
  • Have you had a complete blood count and liver function tests?What have so far been the abnormal things found in all of your tests?
    Anonymous 42789 Replies
    • January 8, 2008
    • 06:17 PM
    • 0
    Flag this Response
  • Sounds like Myasthenia Gravies. They can test for that.
    Anonymous 42789 Replies
    • January 8, 2008
    • 06:33 PM
    • 0
    Flag this Response
  • A couple of the doctors I've been to have suggested MS, but the other doctors say that my MRIs are clean and do not point to MS. I saw an endocrinologist who ran tests on my hormone levels, all of which are normal. The only test that was run that was run that is not normal is the two spinal taps. The one in April was 250 (I don't know what unit the fluid was measured in, sorry), and the one in November was 265. The neurologist suggested a GI for the vomiting and weight gain, and she's also sending me to a different hospital. Other than that, no doctor knows (or even has a clue) as to what's wrong with me. I'm supposed to see the GI in a few weeks, so hopefully part of my problem will be fixed. Does anyone know what type of doctor I should go to about this cold? I've had it for over ten months now, and it's only gotten worse. I tried my family doctor and she didn't know what to tell me, and the neurologist didn't know either. Any help would be appreciated. I looked up Gilbert's Syndrome, as was suggested, but it doesn't fit. I suppose I should have given a bit more information about myself. I'm Caucasian and I have a small frame (only 5'0" tall). Both sides of my family have a history of cancer, and my mother's side has a history of stroke.
    michellem 6 Replies
    • January 12, 2008
    • 02:20 AM
    • 0
    Flag this Response
  • I still have the same cold. I went to a doctor, got antibiotics (azithromycin) and I still have the cold. I went to a new doctor today, and she said that I do have a sinus infection, there's fluid behind my eardrums and my nose is extremely congested and dry. She said the nose being dry and congested could be the cause of my nosebleeds, but isn't sure. I also have a few new symptoms:Over the past month, I've noticed significant hair loss. I used to have very thick hair, and it's been thinning rather rapidly. When I brush my hair, tons of hair comes out, and the same happens when I shower. Any idea as to the cause of that? Also, not very often, but occasionally, when I pee, it is very hot. Steam actually comes off. She doesn't understand that, either. Another new symptom is the back of my neck is always burning up, but I don't have a fever. My hair is cut short, so it's off my neck. This has been like this since the beginning of the year. If anyone has any ideas, please share so I can pass them on to the doctor. I've only found out that my right side is slightly weaker than my left, but no one knows why I've become so weak. It's gotten worse in the past few months, I have more days that I can't even gather the strength to get out of bed. Thanks for the help.xoxo
    michellem 6 Replies
    • February 15, 2008
    • 01:35 AM
    • 0
    Flag this Response
  • the yellow skin would indicate a liver disease--were you screened for hepatitis? It sounds like, however, that your doctor needs to screen you for one of these liver diseases:http://rarediseasesnetwork.epi.usf.edu/clic/learnmore/pfic.htm although you're not a child, some of the symptoms sound like you. "Three types of PFIC have been labeled as PFIC-1, PFIC-2 and PFIC-3. Milder forms of PFIC are also known by the name, benign recurrent intrahepatic cholestasis (BRIC). Thus PFIC-1 is referred to as FIC1 (familial intrahepatic cholestasis 1) disease, PFIC-2 is referred to as BSEP (bile salt excretory pump) disease and PFIC-3 as MDR3 (multidrug resistance 3) diseaseOther common problems include frequent nosebleeds and wheezing. Fat-soluble vitamin (A, E, D and K) deficiencies are common in untreated patients. Vitamin A deficiency can lead to problems with vision. Vitamin E deficiency can lead to problems with balance, strength and coordination. Vitamin D deficiency can lead to poor bone formation. Vitamin K deficiency can lead to bleeding problems. For these reasons, most patients need extra vitamins. In some patients taking a special kind of Vitamin E (TPGS Vitamin E) can help with the absorption of all of the fat-soluble vitamins. Up to a third of patients have gallstones. Most patients have an enlarged liver or enlarged spleen." and then, if you originally took Ketek for your cold, it can cause your symptoms and there are lawyers looking for you:http://injury.findlaw.com/ketek/ketek-overview.html
    Monsterlove 2921 Replies
    • February 15, 2008
    • 02:06 AM
    • 0
    Flag this Response
  • What have your kidney tests said?
    Anonymous 42789 Replies
    • February 15, 2008
    • 03:52 PM
    • 0
    Flag this Response
  • Blaze - I was tested for Lyme disease already, but I will ask my doctor to test again. Monsterlove - that disease actually does seem like it could fit. I just had my liver tested on Friday, I should be hearing back on the bloodwork soon. Is there a certain test for that disease? Mkor4 - No doctor has even suggested testing my kidneys. I'll suggest it to my new doctor the next time I talk to her. One thing I would like to mention is that on Friday, when the blood was drawn, it was a very dark red, almost purple color. My blood has never looked like that, and the woman who drew it didn't understand what was wrong with it. Also, Saturday and Sunday were perhaps my weakest days ever. I could not get out of bed at all, and I couldn't walk without someone behind me, helping me along. I had barely any strength to do anything. I am not so bad today; however, I am still really weak and I have my moments that I must lay down and rest, my body can't handle walking much, or standing for too long. Could this have something to do with having the blood drawn, or is this completely unrelated? Thanks for the replies. I really appreciate it.
    michellem 6 Replies
    • February 18, 2008
    • 11:57 PM
    • 0
    Flag this Response
  • The tests on my kidneys were negative, and the liver functions are normal. I had a test last week, where the GI goes down the throat with a camera (I don't remember what it's called, sorry), and he also did a biopsy. I haven't heard the results of the biopsy yet, but he did say that there was a lot of undigested food, and my body is not digesting as quickly as it should be. Something is blocking it from being digested, which could be a reason for the throwing up. Does anyone have a clue as to what this could be? It's been going on for over a year now, and I still have no answers.
    michellem 6 Replies Flag this Response
  • you have no immune system, theres a name for it but i dont remember. thats why the antibiotics dont work and you are getting sicker, because antibiotics work with the immune system. no immune system renders the antibiotics useless and the infection rages through you unstopped. you will continue to get minor infections, because your immune system cannot deal with the germs everybody comes in contact with, so simple things like thed cold can look like cancer or worse, go to your doctors and suggest this NOW! this is a life threatening illness and if you dont get this fixed now you will become infected with MANY viruses, the cold ON ITS OWN will gives multiple doctors a run for their money, trying to cure an infection when the person has no immune system is nearly impossible. but it can be done. go now before you pick up another common illness or maybe an uncommon viral infection, then they REALLY wont know what to do. also many people will say this is impossible, but you could have this illness triggered at any time, most doctors or people would say "this disease happens from birth to when u die, if you had this we would have seen this long ago" EERRRR wrong! you do takes this with you from birth, and most people with it do show signs soon after birth, BUT it can also be trigger by something for example: you are born. you have this illness but it doesn't show. you grow up, you are 40 now. then your wife has a car crash that is what i mean by "tigger" cancer is tiggered by chemicals and certain foods or chemicals in foods (and many other things). its different in every body. the same thing goes with this immune system disease, it has certain triggers. oh yeah and a bone marrow transplant will fix this problem. good luck and please get to a clean room in a hospital ASAP
    GivenUp 135 Replies Flag this Response
  • It's been over a year, and I'm hoping that I might get a diagnosis tomorrow. Two weeks ago, my hands started shaking. Not too bad, but I could notice them. I was in the emergency room on Sunday night, because all day I was so weak (I couldn't get up, much less walk), and my hands were shaking incredibly bad. I was given Lorazepam in .5 MG tablets, which did nothing for me. I called my primary doctor, and she got me in this morning. On the way there, my hands and legs were shaking, and by the time we got in, I couldn't stand or walk. I began having spasms, so she ordered an MRI. On the way to that, my head and neck were having spasms. I was able to get the MRI, and once they put the contrast in, there was a brain lesion. I believe she said it was 5cm. She thinks it is MS, but I go to the neurologist tomorrow morning, so maybe she can tell me. I'm incredibly worried, so what I'd like to know is what else could this be? I've been trying to research brain lesions, but I can't figure anything out. Can anyone please tell me what other diseases have brain lesions?
    michellem 6 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • According to blaze and fannou (whom I'm pretty sure are the same person) everything points to lyme disease and electro sensitivity. They're on almost every thread on here, so I wouldn't give much thought to those at this point. I think its quite mean to go around scaring people about such a serious disease. Is there some way to bring this to a moderators attention? It sounds to me like your doctors are being at thurough as they can, but sometimes theres just something they aren't familiar enough with so it doesn't come to mind. Maybe getting a second opinion just so another group can brainstorm it could get you the answer you need.
    chromegirl666 101 Replies Flag this Response
  • Reading your post I didn't think I would have much to suggest until you said you were losing hair. That combined with the fact that you have been putting on weight made me think of the pituitary gland. The pituitary gland is in the middle of the head, behind the root of the nose and below the brain. Although about the size of a pea, it is very important. It controls the release of the body's hormones. These are chemicals which ensure normal bodily function. Any imbalance in production of these hormones can have serious effects. Tumours of the pituitary gland, although rarely cancerous, are important: they can lead to overproduction or underproduction of one or more hormones. If they grow large enough they can affect vision by stretching the nerves to the eyes (the optic nerves) which lie near the gland. They are very hard to see with MRI since they are tiny (even tho they are big enough to cause problems). A neurosurgeon might be helpfull with looking at your MRI. The weight gain is caused by elevted cortisol levels and so is the hairloss. Elevated cortisol levels can also be the cause of the extreme weakness. You should look at www.cushings-help.com, they have alot of information about all the things that I have mentioned and more. You need to see an endo as well. Hope this helps... Kiera
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.