I apologize for the very long post. This is very complicated.
Almost a year ago I suddenly became ill one day at work. I experienced dizziness, extreme fatigue, diarrhea, low grade fever, night sweats . These symptoms lasted for several months and as a result I was bed ridden for that period. My GP was stumped, she ran every blood test known to man but couldn't find anything significant.
After 1 month new and more alarming symptoms started to arise. I started to experience debilitating headaches that seemed to be centred around the base of my head. I was also around this time that I also started to experience severe pain in the back (spine) along with the sensation that electrical shocks were travelling up and down my spine. A few days later I woke up in bed and both my arms and legs were tingling (pins and needles) along with a feeling of severe pain in my chest and arm. Again my GP seems stumped. She referred me to a Neurologist who did a very thorough work up. He conducted a wide variety of blood test (lyme, auto-immune, MS) as well as performed an MRI. This revealed nothing. He concluded that I most likely had a virus that was causing these issues.
Keying on that I started to do some research. I found out that both EBV and CMV can cause these issues. I asked my GP to test me for both viruses. She did and the test came back as positive for a very recent CMV infection.
I still experience neurological issues such as muscle twitching, soreness, extreme constipation, headaches centred around the base of the skull and sometimes dizziness.
My question is: Are there any treatment options? My doctor says that antivirals are too dangerous in terms of long term side effects. A recent PCR test for CMV in my blood revealed that he virus could not be found in my blood. However my GP tells me that the virus can sometimes persist in the CSF/Brain and other areas for very long periods of time. Is there anything I can do?
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.
It sounds like you had an infection, the cause of which could not be identified. A CMV test that shows recent CMV infection does not necessarily prove that was the infection you had; the majority of people carry CMV, and in the absence of immunodeficiency (as occurs in HIV patients and other patients with suppressed immune systems), CMV does not typically cause active infection though most people carry it. If the CMV is found in a body fluid, such as blood, CSF, or other fluids, during evidence of an infection, then it can be deemed the causative agent. Finding the virus itself, through specific tests, rather than just antibody titers, is how this virus is diagnosed.
Having said that, your symptoms of twitching, headaches, soreness, could potentially be post-viral, however, CMV can not be assumed to be causative, and given the information you have provided, seems unlikely as a cause. Investigations for other causes of headache and soreness are indicated by your neurologist, and if none are found (it sounds like you had an MRI which is reassuring, but other testing may be necessary), treatment for CMV is strongly recommended AGAINST until more definitive evidence is available that it is causing infection. If it is found to be causing infection, testing for HIV and other causes of immunsuppression would be indicated. Evaluation by an infectious disease specialist would also be indicated before antiviral therapy for CMV is begun.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
I have had a similar story to yours and after 6 months my IgM antibodies for CMV are negative which indicates that the acute phase of this illness is definitely over. I still get twitching mostly of my left leg and foot and this seems to get exacerbated by exercise. I also get occasional pins and needles on that left side. I too have had a neurological examination and MRI of the brain and cervical spine which were normal.
My GP reckons that these are all post-viral symptoms and I have spoken to someone that has had CMV in the past and he experienced symptoms for 12 months.
I guess patience is the key here. Try not to do what I did - I fixated on the worst possible causes for muscle twitching etc. and nearly got myself into a very anxious state!
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