Discussions By Condition: I cannot get a diagnosis.

Please Help, I am about to give up

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: BlueDancer
  • January 24, 2009
  • 05:36 AM

Hi all. I am a 22 year old college student. I am a dancer and a very happy person- but I barely have the energy to get through the day and my eyes bother me 24/7, especially when I am overheated. About a year ago I developed a visual defect in my left eye along with a pain/pressure behind my eyes. I saw an opthalmalogist who said I had optic neuritis and referred me to a neuro-opthamoligist. My symptoms at the time were: extreme fatigue, poor memory, visual issues, frequent headaches, a torso rash, as well as a strange cold wet feeling on my arm. If I touched my arm it felt like an ice cube was melting there. By the time I saw the neuro-opthamalogist, I had visual problems in both eyes. I was told I had a swollen and pale optic disk, and that my pupil (left) had a delayed response. I was hospitalized right away and told that the doctors wanted to check for M.S and other possible causes. After over a week in the hospital, a spinal tap, countless MRI's, blood tests and neurological tests, I was told that they didn't know what I had- but they told me my vision problem was permanent and I just needed to learn to live with it.

I saw countless doctors who tested me for Celiacs (runs in the family) M.S, Devics disease, vitamin deficiencies, anemia, and numerous other diseases. At the follow-ups I always got the same response- which was a pat on the back and a dismissal. Now, all this time later, my eyes are once again causing pain. The visual defect never went away and I have a huge gray cloud in my eyes. Thats annoying- but I understand there is nothing I can do about it. But the constant pain/pressure behind my eyes is driving me mad. My eyes sting and feel strange. I worry that I am having another episode of O.N, but there is nothing I can do and no one to help me. I am also very tired all the time, and I feel like I am never getting enough air. I have headaches often. My neck gets swollen under my jaw often and I still have this bizarre rash on my torso. I have changed detergents and soap often in case its an allergy, but it never lets up. I eat VERY healthily (all organic, no bad additives) and even use all organic bath products. I just don't know whats wrong.

I don't know what all of these mean, but this is what was in my records:

-My M.R.I showed 'early disk desiccation' and a small hemangioma on my spine. I was told this is not an issue.
-I had a 'diffusly low marrow signal' -thats all thats said about that.
-Multiple bilateral level 2 lymph nodes, with the largest right juglodigastric measuring up to 1.3 cm in short axis.

My blood tests show:
-high phosphorus, high chloride
-Trace protein in urine.
-Low: RBC count, hemoglobin, hematocrit. Low pyruvate.
-Abnormal: RBCS, NEUTS, and 'Other cells of unknown origin'

So, here I am. I am weak, out of breath, with a headache, feeling like I am going blind. My memory is just disgraceful. I do yoga and meditate to keep my stress levels low, but that doesn't seem to help my symptoms. Every doctor I have seen has looked at my eyes and my abnormal tests, and then just told me to get used to it. I am only 22. This may not sound like a big deal to many, but its severely effecting my life and my career. I feel awful. Please, please, please help me!!!

P.S: I don't take any medications at all and I am a healthy weight.

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19 Replies:

  • ^ I considered radiation as a possibility, but the problem is that I use a cell-phone maybe twice a month (I hate phones) and I do live .16 miles from a cell tower, but when this problem started, I did not. I appreciate your input but I am not sure that is the problem here. My optic nerve literally swelled, and died in parts. I was told this was a-typical optic neuritis. Regarding the rash, I have had that for at least 5 years and when it developed, I lived quite far from any cell towers. Really the rash is just pesky, its not my major concern. My vision and my memory are. Thank you for the links and your help, I will explore this more.
    BlueDancer 8 Replies
    • January 24, 2009
    • 06:49 PM
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  • to a new home, at least temporarily? There might be something embedded in your house- like black mold
    bobwhite 20 Replies
    • January 25, 2009
    • 02:53 AM
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  • They all have varying levels of competence and insight.
    bobwhite 20 Replies
    • January 25, 2009
    • 02:55 AM
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  • ^ I have already seen an opthamologist, neuro-opthamologist, M.S specialist, three neurologists, three general practicioners and a gastroenterologist. I don't know who to see next...
    BlueDancer 8 Replies
    • January 25, 2009
    • 03:38 AM
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  • Here is a quote from a site on ON: Since the Optic Neuritis Treatment Trial (ONTT), doctors have discovered that treating patients with intravenous steroid medication (but not oral steroids) reduces the risk of developing MS later on. I suggest you see a new doctor specializing in MS....
    Mistergood 4 Replies
    • January 25, 2009
    • 08:39 AM
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  • IF your RBC count is down,you're anemic,and something needs to be done about that.There are all sorts of anemias,but one of them might have to do with your symptoms.Do you have any more information on your blood so I can get started on that?AS for the optic neuritis,I'm really sorry about that.You have about a 38% chance of developing M.S. in 10 years.By the way,how do you read this?
    richard wayne2b 1232 Replies
    • January 25, 2009
    • 01:31 PM
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  • ^ I was told about the steroid treatments and that is was I was initially admitted to the hospital for. But the doctors told me that they thought the side effects of the steroids might be worse than the impact the optic neuritis was having on my vision. They said most O.N goes away on its own after six or so weeks. But by the time I saw them, I had had the symptoms for about 10 weeks, so... All of these arrogant doctors were M.S specialists at a center dedicated just to M.S. And they just blew me off when my tap and MRI's came back clean. They said it wasn't M.S and sent me home. Obviously that did nothing to help me. Each time I see a doctor, they look at my eyes and say that it's not 'that bad' because as one doctor told me some people lose all their vision. I'm not trying to compete for 'worst vision' with these people! I just want help with what is wrong. They thought it was really bad before my test came back clean! After my first appointment I was in the hospital within two hours. They were CERTAIN it was M.S, and all of a sudden, when the test didn't confirm, all these issues that were an emergency before were dismissed. As for my vision currently, I have about 50% vision in my left eye. It looks as if I am looking through thick smoke and colors are very dull. My right eye has a number of small blind spots and some blurriness but colors look bright, somewhat reddish. For the most part, my right eye is what I see with. With both eyes open, I can see relatively well. But I used to have perfect vision. Also- In low light, I can hardly see a thing. It takes me a long time to read my school texts or take notes in a dark room which is very frustrating. I cant even get help with that (audio tape, use of laptop) because I don't have a real diagnosis. I was wondering about the anemia. I just figured if I was anemic they would have said something.... I will post my blood tests asap.
    BlueDancer 8 Replies
    • January 25, 2009
    • 07:32 PM
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  • I was told that the treatment wouldn't work for me because it was too late, and that the side effects weren't worth it. By the time I saw the doctors, I had had the eye symptoms for over ten weeks. My vision in my left eye looks like I am seeing through thick black smoke. Colors in this eye are dull and I have a few small blind spots in my outer vision. My right eye is much better and colors seem bright, but somewhat reddish. There is blurring all along the outside of my central vision and a gray spot as well but it is far less bothersome than my left eye. I feel like I see out of my right eye, and my left eye just lets in some light. At night, my vision is very very poor, but in bright light I can see relatively well. Reading is very tiresome and I have to close and rest my eyes often because it feel as if I am straining. This makes keeping up with school reading pretty tough. So I am not blind, and I can see. But I used to have 20/20 vision and now I don't drive at night, cant take notes in dark classrooms and constantly have a headache behind my eyes. I wondered about the anemia, as I had very pale gums and tongue. But I figured if I was anemic they would have told me. Nothing was said to me at all about that. I was in a highly specialized M.S center with 'top' doctors. They were CERTAIN I had M.S and when I came in for my eye appointment they looked at my eyes and then admitted me right away. After my tests came back, the problems they had thought were really serious before, they dismissed, and I was sent home with no solution. Basically I was told to take it easy and learn to deal with it. I am a dancer and runner and now, when I get overheated my vision gets really bad and I can hardly see. Their solution- don't exercise. I am a ballet dancer!!!Another thing I suppose I should mention is that my O.N is A-typical. Its in both eyes and hasn't gone away. Most O.N only effects one eye and gets better with time. So, thats another reason I don't think they gave me medication.I have, literally, four pages of tests here. I will post what relates to my blood. I'll put the type of test, my results and then the 'normal range' listed:CBC with Diff & plt ct: WBC count- 8.1 (normal is 3.1-10)RBC count- 3.80 (normal is 4-5.2) *lowHemoglobin- 11.7 (normal is 12-15.5) *lowHematocrit- 34.2 (normal is 36-46) *lowMCV- 89 (normal is 80-100)MCH- 30.6 (normal is 26-34)MCHC- 34.2 (normal 31-36)Platelets- 273 (normal is 140-450)Neuts- 5.51 (normal is 1.8-6.8)Lymphs- 1.88 (normal is 1.0-3.4)MONO-0.50 (normal is 0.2-0.8)EOS- 0.13 (normal is0-0.4)BASOS- 0.04 (normal is 0-0.1)PT- 14.2 (normal is 12.0-14.1) *high Int'l normalized ratio- 1.1 (normal is 0.9-1.1)Cell CT 7 Diff, CSF:Appearance- ClearZanthochromia- NegWBCS- noneRBCS- 9 *abnormalNeuts- 3 *abnormalLymphs- 68Large Lymphs- none seenMono-histocytes- 13EOS- none seenBasos- none seenDegenerated cells- none seenOther cells- *abnormal (thats all it says)Nucleated RBCS, CSF- none seenThen the next set of tests is an electrolyte panel. All is normal except for high chloride- 110 (normal is 98-107)Phosphorus-4.8 (normal is 2.4-4.6)Also, under a long list of negative tests for things like 'SSB antibody' is:Pyruvate- 0.11 (normal is 0.30-1.50) *lowFerritin- 9 (normal is 10-291) *lowAlso, as I said before, there is a note on my MRI saying I have a 'diffusely low marrow signal which can be seen in the setting of anemia.' Thanks so much for any and all help!!
    BlueDancer 8 Replies
    • January 25, 2009
    • 08:04 PM
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  • I remembered another thing that I should perhaps mention- I have quite irregular periods. I have missed a number of them as well. I am not, and have never been pregnant. I am an athlete, but I have a healthy BMI (19.5) and prior to my eye problems my periods were always normal and healthy. I don't know if that means anything but I thought I might mention it.
    BlueDancer 8 Replies
    • January 25, 2009
    • 08:46 PM
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  • I'm so sorry,but I can't figure out what's wrong with you except for mild anemia which with the slightly low ferritin indicates possible iron deficiency,although your RBC indices are normal and should show a decrease in the MCV.There's nothing else remarkable about your lab results.YOu either have something common with an atypical presentation or something few,if any,of us has ever seen.
    richard wayne2b 1232 Replies
    • January 26, 2009
    • 00:22 AM
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  • Do you at least have something to take for the pain?
    richard wayne2b 1232 Replies
    • January 26, 2009
    • 00:23 AM
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  • Well, I have to tell you after reviewing the medical history and lab results that my impression here is idiopathic intracranial hypertension secondary to anemia, although admittedly mild anemia by the indications. This would explain the headaches and optic neuritis. I would also ask whether your skin color may in places appear to have a greenish tint or green-yellow. Cases with similar features are most often attributed to impaired CSF absorption because of increased dural venus sinus pressure, or alternatively a defect at the arachnoid villi. The papilledema and visual disturbances are most often self-resolving upon aggressive treatment of the anemia. Continued treatment with prednisone is also advised. I would also share with you that in these instances where intracranial hypertension is indeed evident, MS is not the disease that ultimately presents itself, but rather Systemic Lupus Erythematosis but I would caution you not to leap ahead and focus on having your physician and specialists rule out the idiopathic intracranial hypertension. I don't see an opening pressure posted on the results and would summarily ask whether any brief or temporary relief of any of the symptoms was observed following the spinal tap. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 26, 2009
    • 01:06 AM
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  • Thank you so much for your responses.Regarding the pain- I don't take anything for it becuse I worry that I'll just end up getting rebound headaches in return. Painkillers only help a little anyway. I was given (of all things) vicodin to deal with the pain and I feel its totally insane to take that. I just try to cope. My eyes didn't get better after the spinal tap. I don't remember feeling any differently really. According to the doctor who did it, the pressure of my spinal fluid was normal. At the time that I first experienced the O.N, my diet was admittedly pathetic. I had just had my wisdom teeth out, followed by a stomach bug, so for about a month my diet was pretty minimal. By the time I was in the hospital (at least two months later) I was eating much better. Perhaps all this happened when the anemia was worse and by the time I had blood tests it was better? Is that a possibility?My skin is VERY fair and I haven't really noticed any discolored areas. I currently only have medical insurance through my school. Its pretty minimal and seeing a specialist can take months. If I am anemic, should I take an iron supplement? I already take a multivitamin and eat very well. Is there nothing I can do for my current eye pain/headaches? I still have a very 'foggy-headed' feeling and I feel weak and cannot focus my attention. The eye problems started last June. This new ocular pain started about a week ago. So...I am not sure anemia really explains things because those blood tests are from when my problems started. I don't think I am currently anemic. Just now I have period irregularity, chronic rash, eye pain, headaches, swollen neck, dizziness, confusion, I drop/misuse words, forgetfulness and an out-of-breath feeling, shakiness, Raynauds syndrome and leg weakness. Thank you once again.
    BlueDancer 8 Replies
    • January 26, 2009
    • 01:53 AM
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  • JCottle MD, I just researched idiopathic intracranial hypertension. It really sounds like what I have experienced. Is this possible with normal spinal tap pressure? What I read said that some patients demonstrate a transiently normal pressure despite their harboring idiopathic intracranial hypertension... Thank you so much, I will consult my doctor about this A.S.A.P. You are an angel. I feel hopeful now. Thank you so much!
    BlueDancer 8 Replies
    • January 26, 2009
    • 02:28 AM
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  • Any pressures on the nerves in the head and trunk, i.e. cranium to coccyx, can result in organ malfunction. These pressures are the result mostly of genetic or hereditary soft tissue (fascia, tendons and muscles) dysfunction, and pre-natal influences (inadequate nutrition, exposure to toxins, etc.) which distort the alignment of the body. Trauma and life-style can exacerbate these vulnerable areas. The body is an electrical system, and any kinks in the wiring, (the nerves), cause them to short out, disrupting essential nerve messages. Also, any pressures from these structural distortions can impede circulation of blood and lymph, causing nutrition and oxygen to be withheld from tissues, and interfering with the removal of toxins. Medicine is in the dark in regards to the influence of structural distortions on disease, and will discount such things as spinal stenoses, hemangiomas, spinal distortions, etc. at their patients' peril. In addition to any alignment distortions you may have, the hemangioma may be pressing on nerves, affecting circulation to specific areas. Find a good neuromuscular therapist, and even an osteopath who practices only traditional osteopathy, both of these work with the soft-tissue of the body. Receive two, two-hour sessions a week, working with your therapist to find the tender points throughout the body. The idea is to 1) find the exact points, 2) hold at the right pressure,(anywhere from barely touching the skin to a very deep pressure, one or two points at a time), 3) for the right amount of time (sometimes up to 30 minutes per point!). In addition, myofascial stretching and long, deep, connected massage strokes should be utilized . Except for the myofascial work, use a combination of peanut and olive oil (unless, of course you are allergic to peanuts), half and half, for all therapies. I would try this for one month, then take a week's break and repeat. Goodluck.
    JoAnn1133 1 Replies
    • January 26, 2009
    • 02:49 AM
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  • You have not had your B12 levels tested? I can't understand why this test isn't done regularly in a routine blood panel! B12 deficiency mimics MS symptoms, and can cause irreversible neurological damage. Please get your B12 levels, preferably with a uMMA urine test. Please post your symptoms on the B12 misdiagnosis thread. A "normal" blood test level for B12 ranges between 200-1100, a very wide range. European and Asian countries are now treating for B12 deficiency if the levels fall at 500 or below. With your other blood levels being low, B12 should be ruled out. Best wishesDOM
    acuann 3080 Replies
    • January 26, 2009
    • 02:51 AM
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  • Although uncommon, some patients can indeed demonstrate transient normative CSF pressure and again, based upon your symptoms, I would recommend discussing this with your physicians and ask to repeat the spinal tap with careful attention to opening pressure and try to undergo the test when other symptoms are quite florid, ie headache etc. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 26, 2009
    • 03:04 AM
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  • Dear Dr. Cottle:I'd wondered where you were;then,as usual,you blow me out of the water with a diagnosis I've never heard of!How can one person know so much?I mean that as a direct question to you.Next,about my wife,she's stagnant in her pain.Yes,I know it sounds like a conversion reaction but to what?Please continue your input on her.Thank you very much.
    richard wayne2b 1232 Replies
    • January 26, 2009
    • 04:50 PM
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  • Well Richard, how would you expect me to respond to such a direct question? I suppose I'm just very old. There are plenty of practitioners with far greater skills and knowledge to be certain. I know this because I've run up against them from time to time and they've left me standing in their wake as they blistered through clinical evaluation as though it were a walk in the park. As for your wife, I had responded but did not hear back from you and somehow lost track of the thread. I will certainly give further consideration to her condition and post my response to you. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 26, 2009
    • 06:38 PM
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