Discussions By Condition: I cannot get a diagnosis.

No diagnosis, PLEASE HELP

Posted In: I cannot get a diagnosis. 41 Replies
  • Posted By: alexio771
  • January 19, 2007
  • 04:37 PM

About two months ago I started having trouble with my vision. I cannot focus my eyes on anything, when I do, everything goes blurry. I have a constant headache and stiff neck. I am so lightheaded all of the time that it is hard to even stand up. I have tingling in my arms and legs. Anytime I do any type of physical activity, my heart beats so fast and I am so lightheaded that I need to sit down. I have also been short of breath for a few weeks. My ears hurt constantly and the ring all the time. I have been to 20 doctors. I had an MRI of my head, it showed a 1cm penial cyst but the doctors said it is nothing to worry about. I also found mold in my apartment, so I saw a specialist and he says that it is not the cause of my symptoms. Recently I have been so scared of what I have that anxiety and depression have set in. Doctors have talked about MS, heart problems, auto-immune problems, and increased intercranial pressure, but no one knows what is worng with me. A few doctors have said it is just depression but my body is telling me somethinf is wrong and no one will listen!!! I don't have any ear infections and my blood tests have come back normal.... PLEASE HELP I AM SO SCARED!!!!

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41 Replies:

  • What did the results for MS show? Hang in there.
    Anonymous 42789 Replies
    • January 20, 2007
    • 01:41 AM
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  • Interesting, my daughter who is 12 also has a pineal gland cyst that was diagnosed awhile back. She also experiences vision issues, constant headache and stiff neck. In fact she has most of the symptoms you do. The neurologist told us the same thing. Nothing to worry about. However, I would encourage you to find out as much as you can about cysts that are the same or close to the same as yours. It seems that there is some discrepancy between what doctors in the states compared to doctors in England in this regard. They also decided she had Basilar Artery Migraine, sometimes known as BAM. Some of those symptoms you are having fit that and you might want to educate yourself on that since Basilar Artery Migraines should not be treated with regular migraine medications like Imitrex. They can be very frightening and they can increase your heart rate and really mess with your vision. They do not feel like a regular headache. A good neurologist could help you see if you have that. As for the pineal gland cyst, I am still not sure what was/is the cause of all of the balance issues and other things with my daughter. I still think some of it is from the pineal gland issue. Her neck and back really bother her in the same way it sounds like yours does. So far we have done PT, and put her on 4oo mg of B-2 a day and 250 mg of Magnesium for her headaches. So you might try that and see if that helps at all with your headaches. There is a website for Basilar Artery Migraines that might help you some.
    justcurious 5 Replies
    • January 20, 2007
    • 11:33 AM
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  • how old are you?how long has this been going on?what was the first symptom to appear?what previous illnesses have you had?sorry to enquire but this is a complicated one,and anything you can tell us ,say ,about your work,family and daily activity may help.i agree that there may be migrainous features present,and in the short term,it may help to reduce the degree of stimulation which you experience,even if what results may feel like boredom:migraine first aid!there may be two or three different things going on,which is why so many doctors have not helped.stay optimistic.no doubt they all checked for the obvious major dangers,so you have that in your favour!tell us more,please.
    Anonymous 42789 Replies
    • January 20, 2007
    • 00:15 PM
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  • Thanks everyone for the quick reply. I am only 19 years old. I am a college student at Purdue University. I am a junior so it is not like I am new to the whole college thing and stressed out. The symptoms first started on November 4, 2006. I was driving and all the sudden I had a sudden attack of dizziness...so bad that I passed out..anyway I called my dad to pick me up just thinking I had the flu....well since then it has just gotten progressivly worse. I am scared to death, I have no idea what is wrong with me. I have been seeing a neurologist who ordered the MRI and found the cyst....he said it is very common and nothing to worry about. As for the symptoms...he said he did not find any evidence of MS but he still want to keep it in mind. He also said he does not think it is a migraine. He wants to test for something called PTC (Psuedo-tumor cerebri) some condition where my spine makes too much fluid and puts pressure on my brain.I saw a neuro-ophalmolgist who said he could not find any physical changes in my eyes. I have also seen a psychologist but she says it does not seem to be a mental thing. I have not had any previous illnesses...I was a healthy, athletic teenager until about 3 months ago. I am not overweight, I eat right, I excersize regularly...I don't know what the problem could be. I saw a doctor of internal medicine last week, he thinks I may have pulmonary hypertension or another problem with my heart. He ordered and echocardiogram for Monday. All I know is the symptoms are getting worse...I can barely see, I am so short of breath that I am gasping for air all the time, and I get so light headed just walking..I can't stand it anymore. Should I see a neurosurgeon to see if maybe the cyst is a problem?? Can a cyst that is only 1cm really cause a problem? I would think any mass in one's brain would cause a problem but the doctors don't seem to think so.Thanks for all of your advice....I am open to any advice...I just want my life back!!!
    Anonymous 42789 Replies
    • January 21, 2007
    • 04:28 AM
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  • trust your neurologist about this cyst.otherwise everything you say seems consistent with a lack of properly oxygenated blood getting to your brain.this would account for the fainting,the shortness of breath,the dizziness, the light headedness,the difficulties with vision and the sense of extreme anxiety. in other words, the whole turkey shoot.(isnt that what you colonials say?)i think this must have occurred to the doctor who ordered your echocardiogram.,as a small(and easily fixable!)valve problem may easily account for it all.i do not think it could be the other suspect, an arrythmia,because you report no palpitations(heart bumping).it is just...just,possible that it could be an aneurism(a slight ballooning of a blood vessel),but that would be very very unusual in a young athlete.in any case also fixable.a simple explanation would be if you were breathing very rapidly or taking breaths which were too shallow.this can happen in anxiety quite easily, but i think you would notice. in any case it is under investigation now,as it should be,(by" monday ",do you mean tomorrow?)and i want you to give yourself some mental peace and trust your doctor.let us know how you get on.
    Anonymous 42789 Replies
    • January 21, 2007
    • 08:14 PM
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  • I think you are right...the doctor I saw last immediatley thought that I was not getting enough blood/oxygen to my brain. He thinks that I have a problem with my heart, a clot somewhere, or pulmonary hypertension. I hope that whatever it is, it is a problem with my heart and not my brain. The surgeries for removing penial cysts sound very scary. I have the echocardiogram tommorrow (Jan 22) at 8 AM. I will let you all know what they find....please pray for me! Thanks everyone!!!
    alexio771 11 Replies
    • January 21, 2007
    • 11:09 PM
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  • hi, alexio.i think there is very little chance of this cyst being the problem.intracranial pressure would not cause a pattern like this,also you have your neurologists word for it;whereas the anoxia picture is so consistent and unambiguous.(it also explains the rapid heartbeat:i forgot to list that in my little sequence earlier.)see what i mean?my only remaining concern here is that you say that things are getting worse.i would be a lot happier if i knew that your doctor understood this properly.be sure to leave him in no doubt about this important point.i know you have different time zones over there ,with the east coast being about five hours behind greenwich mean time.so one o,clock ourtime,then.we dont "do god "in the same way that americans do,but in your case i will make an exception.
    Anonymous 42789 Replies
    • January 22, 2007
    • 00:48 AM
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  • I had my echo this morning. The tech running it said she didn't see any major problems but she said a cardiologist will read the echo and then write a report. I should get the results in a few days. I also see another doctor later this week. He is a doctor of internal medicine....he is one of the best in the area so I really hope he can figure all of this out. Thanks everyone, I will keep you updated!!
    alexio771 11 Replies
    • January 22, 2007
    • 03:19 PM
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  • Have the results of my echocardiogram. The only things that is showed are:1. Mild right ventricular dialation2. Trace of mitral and tricuspid insufficiency Are these anything to be worried about??Also I saw another doctor of internal medine today and he wants to rule out MS and my heart going into v-tach. So he wants me to wear a heart monitor for 24 hours and to see ANOTHER neurologist.He said the reflexes on the left side of my body are hyper-reactive and that is why he thinks it could be MS. He also gave me a prescription for topomax to see if that will get rid of my headache. Does anyone think it could be MS or my heart??
    alexio771 11 Replies
    • January 25, 2007
    • 09:31 PM
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  • I know this might be way out there!!! However, I too believe that this cyst is a cause of some of your problems. You also mentioned the mold too. From what I have been reading (at first I was skeptical) mold can be pretty serious. It can cause a multitude of problems. Mold can cause heart problems (Breathing difficulty) & can even cause you to get cysts on the brain which in return can cause a multitude of other problems. Just thought I would relay that to you. I am always trying to find the root of the problem & I think you should look into this mold thing. All I am asking is that you do some research on the net.
    Anonymous 42789 Replies
    • January 27, 2007
    • 03:47 AM
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  • hi alexio.the blood brain picture is too compelling to dismiss yet: ask if anything else could be restricting your flow.sporadic hypotension?a restriction of some sort on a carotid or vertebral artery?if it is m.s. you are in a good set of categories.young...female,to start with.i have a friend,just diagnosed m.s.also young(though not now!)when first suffering.i was able to tell her that i had observed nystagmus in both her eyes ,i think in 1981 or 1982.i didnt know what it was then of course, but that will give you an idea of how slowly it progresses in young women.she is on a walking holiday now.......!also researching this for her i come across the fact that stem cell research is progressing--in europe---at a "frenzied"pace.also there are one or two new therapies which seem promising in themselves ,and i will tell youabout them if need be.two of them promise to bring progression to a full stop about half the time and to slow it"most significantly" for the rest .but i think we would be seeing other symptoms if it was m .s. so dont give up on the blood yet. i repeat ;trust your neurologist about this cyst ,but let him know that problems remain.there is no reason why it shouldnt be looked at again.thank you for keeping us up to date,.
    Anonymous 42789 Replies
    • January 29, 2007
    • 05:08 PM
    • 0
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  • First of all, don't take the "its all anxeity" bull. Doctors dont like to say I dont know, unless they are good ones. The good doctors realize that they don't nor can they possibly know it all, when it comes to head/neck/brain ect. Look for and ask around about a good doctor that like to take on a challenge and make them prove that it is anxiety. It is the catch all diagnosis of the day. Ask about fibromyalgia and myofacial pain as it is very under diagonised, also ask about Arnold-Chiari Malformation (Type 1).
    jackrorabbit 113 Replies
    • January 29, 2007
    • 05:35 PM
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  • Do you take birth control pills? Are you taking any other medications currently?DOM
    acuann 3080 Replies
    • January 29, 2007
    • 05:54 PM
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  • Acuann- The only medication is take now is Lexapro. It is an anti-depressant they started me on when this all began. They said it would help ease the anxiety. I also take a lot of Motrin, it seems to take the edge off of the headache and neckache. I do not take birth control pills. The doctors have put me on all sorts of different medicines, however I do not continue to take any of them because they don't seem to help much. Jackrorabbit - I finally found a doctor that said "don't worry you are not crazy, there is something wrong." This doctor want me to see another neurologist, cardiologist, and an ENT. The doctor thinks that it is some type of auto-immune problem, but he is just not sure which it is, if any. Fibromyalgia has been suggested, but the doctor does not think this is the case. All the doctors keep bringing up MS as a possibility, but I really do not think it is that. The symptoms seem to be progressing too fast to be MS. Recently I have been having more numbness in my feet and my left hand, and my vision continues to get worse. I have more doctors scheduled for this week, I will keep everyone updated. THANKS FOR THE ADVICE!!!!!
    alexio771 11 Replies
    • January 29, 2007
    • 09:22 PM
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  • There are 4 types of MS. And one of them is very fast moving. If so it will show on an MRI of brain or brain stem or in the spinal fluid. I know cause I have had the testing both ways. I was fortunate that it came up negitive, but I am still in limbo for what is causing the trouble. So its back to the drawing board with the neurologist at UVA.
    jackrorabbit 113 Replies
    • January 30, 2007
    • 08:28 PM
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  • HAve you been tested for Lyme disease and it co-infections?? It has many of the same symptoms that you are having. It can mimic Ms, Fibro and many other things. Magnasium will help with the pains and headaches. Your potassium maybe be off too....Hope this helps. Hope ya feel better soon.
    Anonymous 42789 Replies
    • January 31, 2007
    • 06:13 AM
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  • in fact "i dont know"is the mark of a real scientist,and is the proper starting point for any attempt to diagnose.also,in doctor speak,"it is just anxiety,"can mean "go away." though often it is true.it depends on the doctor.alexio, you might ask if it is possible that some blood problem is limiting the oxygen to your brain.if everything is mechanically o.k. as your scan suggests,then this may be possible.while we are at the "i dont know"stage it seems reasonable to explore possibilities .how are you feeling?are things progressing?any new signs or symptoms?anything tend to make it feel better or worse?are tests for m.s. in prospect?brain scan is good,though at this time inthe progress there may not be enough to see.c.s .f.is often inconclusive,so symptom profile may be unusually important. what are they saying to you?it still seems to me that anoxia should not be entirely discounted.
    Anonymous 42789 Replies
    • January 31, 2007
    • 01:29 PM
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  • The doctors want to explore the possibility that there is something wrong with my heart or that I have an autoimmune probldachesem. I am scheduled to see a cardiologist next week and I am also scheduled to have a spinal tap next week. This tap should rule out MS and another problem they think I have. They brought up the possibility of a problem called PTC - Psuedo Tumor Cerebri - where your body makes too much spinal fluid and puts pressure on your brain, the spinal tap should rule this out. the symptoms continue to progress. My vision remains out of focus, constant headacaches and lightheadedness, fatigue, tingling in my hands and feet, within the last few weeks I have developed shortness of breath and it feels like my heart skips a beat every once in a while. Just walking up the stairs I get so out of breath that I have to bend over and catch my breather. One doctor found that the reflexes on my left side are hyper-reactive, which makes him think that it is something neurological. I seem to feel a bit better when I lie down but when this happens, my heart feels as if it skips a beat. I will ask about Lyme disease but as I understand it, you have to be in contact with a tick to develop that. Maybe someone can answer this. The day this first started I just had a sudden attack of severe lightheadedness, I passed out for a second, and was very short of breath for about an hour. After that happened all of the other symptoms started. Is there any possibility that I had a very small stroke or heart attack??? Thanks for all the advice!! ~jackrorabbit, I hope they can give you a diagnosis soon, I know how frustrating and scary it is not knowing what is wrong with you!
    alexio771 11 Replies
    • January 31, 2007
    • 03:43 PM
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  • Medical Encyclopedia: Alpha-1 antitrypsin deficiencyURL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000120.htm Alternative names AAT deficiency Definition Alpha-1 antitrypsin deficiency is a lack of a liver protein that blocks the destructive effects of certain enzymes. The condition may lead to emphysema and liver disease.Causes, incidence, and risk factors Alpha-1 antitrypsin deficiency results from a genetic defect. The mechanism that causes associated liver disease and emphysema in some people with this deficiency is not known. However some evidence suggests that it may be related to inflammation. Approximately 75% of adults with severe deficiency will develop emphysema, which often begins before 40 years of age. Smoking can increase risk.Symptoms Shortness of breath with and without exertion Unintentional weight loss Wheezing Additional symptoms that may be associated with emphysema or cirrhosis include the following: Abnormal breathing pattern (exhalation takes more than twice as long as inspiration) Agitation Ankle, feet, and leg swelling Awakening from sleep not feeling rested Bloody, dark black or tarry bowel movements (melena) Breast development in males Confusion Daytime sleepiness Difficulty falling asleep or staying asleep (insomnia) Difficulty paying attention Dry mouth Excessive thirst Fatigue Fluctuating mood Headache Impaired concentration Impaired judgment Impotence Increased front-to-back diameter of the chest (barrel-shaped chest) Irritability or poor temper control Light-headedness or fainting while standing Memory loss Paleness Rapid heart rate when rising to a standing position Skin rash or lesion on the hands or feet, redness Slow, sluggish, lethargic movement Swollen abdomen or increased girth Vision abnormalities Vomiting blood Vomiting material that looks like coffee grounds Signs and tests A physical examination may reveal a barrel-shaped chest. Listening to the chest with a stethoscope may reveal wheezing, crackles, or decreased breath sounds. The following tests may also help with diagnosis:Arterial blood gases Serum alpha-1 antitrypsin level Chest x-ray Pulmonary function test Genetic testing Treatment Replacement (augmentation) therapy with the missing AAT protein is available. However, it is not known how effective this is once disease has developed or which people would benefit most. Certainly, quitting smoking is crucial.Other treatments include bronchodilators and prompt antibiotics for upper respiratory tract infections. Lung transplantation may be an option for those who develop end-stage lung disease. In addition, genetic testing of relatives may be recommended.Expectations (prognosis) Some people with this deficiency will not develop liver or lung disease. Emphysema and cirrhosis, however, are both progressive diseases that can kill.Complications Emphysema Cirrhosis Calling your health care provider Call your health care provider if you develop symptoms of alpha-1 antitrypsin deficiency.
    Anonymous 42789 Replies
    • January 31, 2007
    • 09:49 PM
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  • i have same kind of symptoma when i had episode of dizziness due to viral infection ,what i think is whenever u have some impact in ur life ,depression starts,thanks god whenever you go for test of any kind they found nothing ,you should be happy that i am perfect,trust on your doctors,tries to keep you happy alwaysgood luckalexo
    Anonymous 42789 Replies
    • January 31, 2007
    • 10:08 PM
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