Discussions By Condition: I cannot get a diagnosis.

Help FM, 25, Dizziness, Fatigue, vision problems etc for 3.5 years

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • April 2, 2007
  • 08:56 PM


Any help or advice would be so appreciated! :o)
I have had a debilitating set of symptoms since Oct 2003. It started suddenly with the feeling that I was walking on an unsteady surface. I also felt like my eyes were moving uncontrollably. I took a few days off work and I was extremely fatigued. When I would try and sleep my quads felt like they were on fire. That went away after a few days. Over the past 3.5 years some things have come and gone but the trend has been an increase in symptoms. I have felt numbness in spots, tingling, sporadic muscle spasms, and constant underlying muscle tremor. The tremor started in my neck and slowly moved down over time and now it’s in my whole body. I feel it more when I lay down because it’s not super strong. I had coordination problems when this first started but I believe I have adapted (I used to miss door handles). I've had problems with my vision from day one. Peripheral vision problems, trouble judging distances when driving, 3 times I've had a blind spot in my field of view that lasted half an hour (hasn’t happened in a while), objects look at vibrate, flash, have a ghost outline. I see this green or purple pattern when I look at solid surfaces. Its hard to see in the dark. My vision is clouded with spec everywhere like a fuzzy TV screen. I have trouble concentrating, recalling things, remember what I was doing if I get distracted, decreased attention span. All of this has lead to a 180 turn in my life from full time straight A university student while working almost full time to finishing school very poorly due to all these symptoms and working here and there over the past year since finishing but unable to work full time. Unfortunately there are no part time jobs that pay much. The fatigue is very debilitating. Seemingly unrelated but worth mentioning is frequent urination. I have to go many times throughout out the day and several time a night. This has been happening for only the last 8 months. Also I have had hives every day since the summer of last year. My hair has thinned substantially. It seems like whatever is wrong is now showing on the outside as well. I've seen every doctor under the sun and my frequent diagnosis is depression. I believe I am coping but if I'm depressed it is as a result not the cause. I have had and EEG, CT scan, MRI, LP, EMG...all normal. I have I ideas about what it could be but I have not been diagnosed with anything. I am not looking for a cure per se because I don't know that there is one and I’m not into prescriptions. At first I was angry but now I've accepted how it is, but I like to do some exploring here and there. I am doing some cleansing for toxins etc. I have tried many things and I am hopeful but I know healing is a journey! I really would like a diagnosis so I know what I have been dealing with for all this time. One doc mentioned "visual vestibular mismatch" (no cure). I have considered lyme disease (test not positive), mercury toxicity (or some kind or toxicity), and MS. I think my symptoms match Primary progressive MS which is one of the less common types and needs a spinal MRI (think I only had one of the head). Would it be a good idea to request a spinal MRI? My doc isn’t much help...he tells me I'm perfectly fine because all test have been fine which is good news but I feel the same...gradually worse. Has anyone heard of anything similar or have any ideas? Thanks again!

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3 Replies:

  • Hi, Your not alone, many Lyme victims have been in your shoes for many yrs.. Lyme has been linked to Ms and much more. I was bitten 20 yrs ago, when Lyme was practically unheard of. I was never tested, untill last summer when I got bit again. The western Blot test was finally done and came back positive. The tests do not reveal any co infections, those have to be tested and treated separately. Abt 7 yrs ago, I was abt redridden with weakness and pain, the Mri came back as NO MS, so the neuro dx'd me with Fibro. I was treated with lots of antidepressants, that did nothing. Part of the dx of Lyme is by symptoms. The longer it is let go, the harder it will be to recover. Please check out this link and go from there...Best wishes. lymenet.org
    Anonymous 42789 Replies Flag this Response
  • you have ME sx...confused with Lyme and many others...it's a virus, neurological all the sx you listed are there...take a look
    mommy cat 1654 Replies Flag this Response
  • sorry, got ahead of myself go to www.ahummingbirdsguide.com scary how many people on this site are having these sx...good luck
    mommy cat 1654 Replies Flag this Response
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