Dear Mr. **********:
I am very sorry to hear about your symptoms. First question would be why did you take acylovir in the first place? One would only take this if one had Herpes, did your physician prescribe this to you? Herpes 6 or HSV6 is a common infection that most children get and therefore most adults have antibodies to it. In children it causes fever, upper respiratory-like symptoms (sometimes), headache, achy feelings, and rash (sometimes). It can cause something called acute demyelinating encephalomyelitis which is an acute demyelinating disease that most people recover fully from. What is your immune status? How extensive is the demyelination of the white matter, is it in a particular distribution? This type of infection can be very serious in an immunocompromised individual. My next question is your EEG? I am confused because 20 hertz activity with an amplitude of 20 microvolts is a normal beta rhythm that we see in most all individuals. Excessive activity is associated with benzodiazepine use but we do not consider excessive the values that you gave, this is normal. Excessive would be an abnormal distribution with amplitude much higher than the normal 20 microvolts. Some of your symptoms have an epilepsy flavor but I would think that the EEG would show some abnormality such as epileptiform discharges. Since there was no slowing, then by electrical criteria encephalopathy is likely not an issue.
So, as you can see I am alittle confused. You must have had normal lab work or you would have told me. Your MRI results of your spinal cord can be a normal picture of earlier than usual degeneration. We see this type of picture in many people.
What does your neurologist say? You have some symptoms of a dysautomonia, epilepsy, chronic fatigue syndrome, anxiety disorder, etc. Putting these things together is a problem. One thing to think about is a mitochondrial disorder. Maybe in the workup for this other possiblities can be found or ruled out. I would suggest lactate, pyruvate, ammonia, serum amino acids, urine organic acids, and carnitine levels.
CCF Neuro MD
A couple of additional syptoms. I lose feeling in parts of body ex I can burn myself and not feel it for 20 seconds. I also lose my emotions at times.I can not concentrate or think. I have found myself walking around talking to myself for an hour. All of this but I still have a huge sexual appetite,although my lack of energy doesn,t help. It will also move toward my lungs at that time my breathing gets very bad.
Wrote you long letter--lost it before done and mailed. I'm 58, had a car accident--all your symptoms--took eight months for a diagnosis and cure at a big city "teaching" hospital where I finally referred myself before I died. You may call me at (607)733-7426--easier to talk than type--have handicap.
Regards with hope,
Judy you are right with what you said to Ron. It is better to go to one of these top hospitals to get help. You spend more money in the long run going to several doctors that can't help you than by going to a place that is going to get to the bottom of your symptoms. Judy what kinds of symptoms do you suffer from and what did the Cleveland Clinic find out? I hope you find answers Ron and don't give up. Make up your mind to get the help you need so you can get your life back.Good luck to you. Cindy
I am so sorry to hear about your situation. I don't really have any specific medical advice to provide. However, it is extremely important that you get the best help possible and soon. Please make an appointment at an excellent facility. Such as the Cleveland clinic, mayo clinic, mass general, Johns hopkings. There is lots of hope . I've been searching for the cause of my problems for over a year. They are different and not as bad as yours. I went to the cleveland clinic and at least have a partial explanation. They are also continuing to work with me remotely to get to the total bottom of it.
I undertand how difficult the unknown can be and how difficult it can be to adjust from an extremely promissing career to maybe I can't even work. Its really hard, but you can be happy again. Your family needs you. I understand that you are very frustrated, angry, and depressed, but it would be much worse for your family if you were not around. I know someone that was diagnosed with cancer and then ended it. His family was devastated. They felt like failures. It caused many, many problems for the family both emotionally and financially. Please get help to deal with these types of feelings. Just like any other medical problem, emotional issues are quite treatable.
I noted that you are concerned about finances, but that needs to come second to your health. Spend what it takes to get correct and proper treatment. Your family would rather have you than money.
There is an answer, never give up.
You are in my thoughts and prayers.
I am so sorry to hear about your symptoms. I know how it is to have a problem that cannot be diagnosed. I think the best thing for you to do is to keep a positive attitude, and to go to a big research center. I know a neurologist here in Atlanta, named Dr. Linton Hopkins. He is the professor of neurology at Emory University. I am sure that he could help you out. Even if you cannot fly here for an appointment, you could call him, he is a very nice guy. Here is his information:
Work Phone 404-778-3452
Email Address ***@****
I dont know where you live, but if I were you, I would consider him. I am so sorry to hear about your problems, and I hope they get better. Please feel free to email me, I would love to hear from you, let me know how you are doing. My email is ***@****.