Discussions By Condition: I cannot get a diagnosis.

Seeking Diagnosis of Underlying Causes Via Partial Diagnosis

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: neurotransmissing
  • April 18, 2009
  • 05:02 AM

Hi everybody, I am new here. I was very recently diagnosed with the following three conditions; I believe them to be secondary and perhaps other unseen/undetected conditions are what actually led up to them:

Leukoencephalopathy (extensive)
Demyelination (non-specific)
Swollen Lymph Nodes (found by chance on MRI of brain and spine)

The purpose of the blood work and MRI was to finally, definitively, and conclusively rule out Multiple Sclerosis and find out what, exactly, it is that I do have.

The three conditions above have been diagnosed, however, the difficulty is in finding the "core cause" or the underlying condition(s) that provoked the onset of the above disorders.

Going through the Multiple Sclerosis testing, testing, testing ... processes of elimination ... and now having the very unexpected, but conclusive and definitive answer: I do not have Multiple Sclerosis, but I do have the above three conditions.

Does anyone know what could be looked at next, may have been overlooked, or have may since changed and developed resulting in a different result? I've been looking over the lymphomas/cancers/leukemias, etc. Also, the many different viral/bacterial possibilities and it appears that everything is covered. The only possible exception I can find is in the cancers, given that some form may have developed later (those tests were thoroughly conducted in 2005, perhaps since, that has changed). Or perhaps with others ... results did not reflect accurately or developments occurred following these tests that made them "pass" perhaps like Lyme Disease, Lupus, and similar (again, just repeated). Many of them have already been repeated (some multiple times over the years) to confirm; any ideas?

Perhaps tests are available that are more rare, not usually done, or perhaps non-traditional in "atypical" cases when/where everything "appears" to have been ruled out and left only the three listed above? Any ideas? I see, remaining, cancers (as mentioned above) and PML; it's lookin' a bit grim.


All feedback immensely appreciated; thank you for taking the time!! I will be posting more information; I'm very sick and it's "time out" for me.

Thanks so much!

~ Cindy :eek:

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  • A bit more, sorry ... I'm unable to use the "edit" option yet (too soon, brand new user, 1st post -- this thread). About my initial post: The swollen lymph nodes mentioned are all of them on both sides of my neck that could be seen on the MRI and "are of much concern." I also have Hashimoto's Thyroiditis; had obstructive sleep apnea and was on CPAP machine during sleep; have Dermographism (also referred to as "Write on Disease"); ongoing very rapid weight loss (the reason I no longer suffer from sleep apnea); loss of appetite; migraines at worst, headaches at best; overall weakness; numbness/tingling; loss of use (legs & arms); clumsiness -- run into things; slurred and slow speech; loss of words (recall), forgetfulness (chronic), appear drunk/intoxicated, loss of eyesight comes and goes -- very blurry, worsening; trouble swallowing; itching; overall bodyaches; eyes look very tired and very dark circles/bags underneath; frequent urges to urinate immediately (but not much urination/elimination, if more than a couple drops even come out); jaw aches, can't chew, mouth won't open wide enough to get food in; chronic fatigue; easily distracted; overwhelmed and difficulty coping; unable to perform simple tasks previously taken for granted (very simple tasks) ... everything takes forever to accomplish, and must be re-checked for error; drop things, legs collapse and I fall to floor (like knees just give out); ears ring; peripheral vision is spotty; confusion; disorientation; dizziness; sleep deprivation (circadian rhythm is nil; sleep-wake cycle is erratic); depression and crying spells (day-to-day struggling and lack of production, the simplest of tasks ... many days of no function); problems maintaining hygiene, unable to do anything but lay still for days; an average day equals approximately two hours, total, of productivity ... of which the end result is little to none; cannot drive anymore, need rides; have caretaker; can no longer manage finances, shopping, housekeeping, laundry, getting to appointments, remembering things; I "space out," I'm here, awake, but not aware of my surroundings or what is taking place around me or with others there with me. The list goes on ... and everything comes and goes in variable degrees; every day is different. I must always expect the unexpected ... in a moment, everything can change. This is physically, emotionally, mentally, and psychologically draining. I am exhausted!! We see PML and the cancers. I'm hoping there could be other explanations and/or tests that I could mention during my upcoming appointments. All help is appreciated! Thanks so much! P.S. About the DISCLAIMER: It pertains to anything I may contribute in the forums in my efforts, as a mere layperson, to help.
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