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9 Year Long Illness with No Diagnosis

I am writing to ask for help. I have been suffering with what I can only call a mystery illness since May 2001. I will go into more detail later on, but I have been to over 30 doctors, both internists and specialists, and no one has been able to figure out what is wrong and I continue to suffer.

During the summer of 2001, a month after returning from vacation for 9 days in Barcelona, I fell ill with what was diagnosed by my GP at the time as mononucleosis for about 8 weeks. He claimed it was "a severe and unusual strain" that caused severe muscle and joint pain all over my body, hypersensitive skin that was sore and hurt to be touched, low grade fever, sore throat, post nasal drip, and fatigue. After the mono appeared to have gone away, I would get monthly attacks with the same symptoms that would last anywhere from 3 days to 3 weeks. These have continued to this day. No medications ease the symptoms and I just have to wait for them to go away.

After having this long enough, I have stopped drinking alcohol because I have found this is one trigger. Another trigger is going too long without food and another is high stress. I go with fewer attacks now, but still have them. At times, I get attacks without any identifiable trigger. I have seen many internists for this, as well as an allergist, an immunologist, rheumatologists, a hematologist, three infectious disease specialists, and three neurologists, to name a few. The hematologist tested me for porphyria and it came back negative. I have been tested for HIV/AIDS, rheumatic fever, STDs, Lyme Disease, Brucellosis, and Multiple Sclerosis, to name a few. All tests have come back negative, most repeatedly, as I have seen so many doctors about this problem. I have been rushed to the hospital several times when I have an attack because I have been in so much pain I could not get myself off of the couch/bed to get myself to the bathroom. My uncle has fibromyalgia and my mother’s family has a history of thyroid problems. Chronic Fatigue Syndrome was suggested but then dismissed as a possibility because my attacks do not last for months. An additional piece of information is that my bilirubin levels are always very high when my liver enzymes are tested.

About 2 years ago, I developed problems walking using my left leg. On April 23, 2008, I had knee surgery on my left knee. A premier NYC orthopedic surgeon performed the surgery and thought I had a torn meniscus and believed he saw the torn meniscus on the MRI of my knee. It turned out to be chondromalacial patella when he went in and did the arthroscopic surgery. A year before the surgery I saw a physiatrist because I could not flex my left calf and it was causing problems walking. She thought it was a torn meniscus and sent me for a MRI, which led me to the orthopedic surgeon.

I still have great trouble walking and it gets worse with each passing day and have always believed that these problems are connected to my mystery illness. The leg will not engage at times when I am walking and I often have a limp and/or the leg will drag behind me. I still cannot flex my left calf and I cannot pull my left foot up to my shin as far as I can with my right foot. At night, I get horrible, repeated cramps in my left calf and have tried taking potassium and drinking tonic water and it has not helped much and the Zanaflax my neurologist gave me to take at night does not always help. My left quadriceps and left glute will spasm and twitch uncontrollably when I stand or lie in certain positions. I fall frequently due to these problems and they are getting worse. My neurologist completed a series of MRIs of my brain and central nervous system, EMG testing, and a Visual Evoked Potential test. The results have been “atypical” (quoting the neurologist) for MS. Furthermore, he has found that the loss of strength and coordination is not limited to my left leg. The entire left side of my body is losing strength and coordination. The only thing he did find on the MRIs were two 2-3 millimeter long lesions on the right side of my brain in the area that controls motion on the left side of the body. That was all he was able to tell me about them and had a radiologist look at my films and said the lesions are, “unremarkable.”

In a visit to another neurologist, in August 2009, he suggested that this might be a post-viral syndrome resulting from the Epstein-Barr virus. I have repeatedly tested positive for Epstein-Barr. This doctor read of four cases, in Brain (journal), where patients have had post-viral syndromes from Epstein-Barr with symptoms similar to mine. He recommended I see an infectious disease specialist again, specifically to look into a post-viral syndrome, which is what has brought me here.

I have been suffering for too long and have become extremely upset with each passing day and passing doctor’s visit where I do not get any answers. I am scared and feel helpless. I look forward to hearing from anyone that can help and hope to be pointed in the right direction to a diagnosis and treatment.
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replied August 5th, 2010
Hi rexx,
you need to see a ms specialist as you are been given the run around.For some reason dr don't like diagnosing diseases thats the way i felt i waited years for a diagnosis , and only for i demanded a diagnosis as i was so bad (symptom wise) good luck
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replied August 5th, 2010
Thanks Trifle. I have seen a MS Specialist at Columbia Presbyterian in NYC and he tested me using all the tests for MS and was told that it is not MS. I have now been told this by 4 neurologists, including the MS specialist.
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replied August 30th, 2012
have you been tested for RMSF
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