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Hi & thanks for reading...sorry for the length...but I don't want to leave out possible relevant information.

Between 2005 and 2007 I had four "attacks" of symptoms that put me out of commission for two weeks at a time. I felt a very deep muscle ache starting in my right leg, spreading to my groin, then across my buttock area and down my left leg. Along with this ache I had extreme malaise and fatigue and sore right groin lymph nodes. The attack would hit me within one day and disappear just as quickly. In case this is important, I was in Mumbai, India during the first two attacks and had every test possible undertaken with no results.

In June 2008 the same attack came on except it lasted over a month and then the symptoms increased & changed. Within one hour I could feel peripheral nerve burning/tingling run up my torso and back into my face and scalp. I could feel it in my eyes, tongue and even my lips. A week later I started getting waves of heat flow through my body (from legs to head) and with each wave I felt as if I may pass out. I could not drive or even leave the apartment for fear of fainting. The waves could come and go over 30 mins or sometimes even last for several hours. Each wave also brought along an extreme black depression feeling that passed with the wave. (please note that I have no history of any depression or anxiety).

Four months later I started a slow recovery and the waves of weakness started to get less intense and less in frequency. But to this day I suffer from peripheral nerve burning and tingling, fatigue/malaise, lack of stamina (tire easily), and the original very sore, achy legs, deep ache in buttock and sore groin lymph nodes remain.

Battery of Testing: Two Neurologists, Rheumatologist, two tropical disease/internal medicine and my GP. Head/Spine MRI, Head CT, Groin ultrasound, pelvis Xray along with too many blood tests to mention (including ANA) . I have also completed the whole circuit of Holistic practitioners and went Gluten free for four months. I have spend many hours researching online to see if anyone has had similar symptoms. End result is that no one knows. (I am currently on Gabepentin 300mg x 2 a day for the nerve pain)

I refused to believe that I can be feeling so sick and weak and no one has a clue? A few more options for me to test...try steroid treatment, try strong antibiotic treatment, nerve and/or muscle biopsy.

Does anyone have any ideas? (thanks for reading!)





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