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In need of a diagnosis

I have been suffering from neurological symptoms for over a year now and have been unable to determine the cause or find any real help with my symptoms. My symptoms began on April 12, 2012.  My vision went fuzzy, I became very lightheaded and just felt strange.  For the following week, symptoms came and went, sometimes worse and sometimes better.  About a week later, I started getting a burning/tingling sensation down my spine and primarily my left side.  
Looking back, I realize it all started about a year and a half earlier.  There were at least four previous instances I specifically remember where I felt strong weakness in my legs, lost some feeling in my left hand and bouts of lightheadedness.  Two of the instances were when I was in high heat.  Up to this current incident, it always resolved itself within a couple of days.
My husband and I were serving as missionaries in Ukraine for the eight years prior to the onset of this illness.  We spent the first two years in an area that was affected by Chernobyl.  We then spend 3-1/2 years in a cleaner area.  The last three years we lived in a more polluted area with many factories and mines.  We traveled weekly and lived under many different conditions.  However, our health held up fine until the recent past.  
The following are my main symptoms:
• Chronic fatigue - Energy levels about half what they were previously
• Chronic blurry vision
• Chronic tingling and burning sensation in my arms and spine - not constant, but most days
• Chronic heat intolerance - When in high heat and/or humidity, my limbs feel very weak
• Dizziness/lightheadedness
• Electric-like feelings in my head
• Weakness in my hands and legs, feeling as if I've lost some dexterity in my left hand
• Difficulty concentrating
• Pain in my mid-back that feels like muscle spasms
• Body aches - couple days each month
Main triggers: Heat, humidity, bright lights, fatigue and stress.
I had MRIs done last year - I don't know if they were done with MS protocol or not.  The only things remarkable on the brain were right celebellar encephalomalacia and small focal nonspecific chronic white matter T2 signal change in the right corona radiata.
Medications I have tried:
• Gabapentin (June 2012) - helped the most so far, but doctor wanted to try other medications
• Zoloft (July 2012) - made symptoms worse, couldn't sleep.  
• Amitriptylene (July-Aug 2012) - didn't help, only made me feel worse due to increased fatigue.  
• Homeopathic remedy, Aurum Mur Nat (Dec-present) - helped some emotionally and with fatigue.  
• Lyrica (May-Jun 2013) - Began experiencing pain in chest and strong anxiety, so discontinued.
• Cymbalta (July 2013) - Terrible side effects so discontinued after two weeks.  No relief at all.
I'd appreciate any suggestions on where to turn next.
Best Answer
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi!
I am sorry to hear about your symptoms. Many of these may be due to the encephalomalacia. Encephalomalacia is not an illness. It is basically a softening of the brain matter as a result of an ischemia or infarction, degenerative changes, infection, craniocerebral trauma, or other injury. Since you have prominent lesions on right corono radiate, it can affect the processing of signals between brain and rest of the body. This can also cause many of your symptoms. Other than this benign intracranial hypertension is another possibility. A spinal tap should be done to diagnose this and to rule out MS.  Hyperthyroidism and autoimmune disorders too should be looked into.  
Based on the information I have, the symptoms have to be managed conservatively as there is no other treatment for encephalomalacia and chronic lesion in corona radiata. However, since a confirmed diagnosis cannot be given on net please consult your neurologist regarding all these possibilities. Hope this helps. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
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Avatar universal
Thank you so much for your insight. I have seen two neurologists but no one seemed concerned about the encephalomalacia and they said the white matter were probably just spaces? . I did also see a rheumatologist and an endocrinologist and they didn't find anything to suggest these areas. I am waiting now to see a new neurologist at shands if they will see me. I had a spinal tap done last year that was normal. It's now been over a year since this began with no improvement - if anything, it's gotten worse. Would it be worthwhile at some point to redo mris and even on a t3 weighted?  Thank you. I've been pretty much told all along this is just stress though I don't feel stressed out (other than not knowing what's going on).
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