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Avatar universal

What is wrong. Dying at 48 and nobody knows.

I am a 48 yr old M. 4 years ago I started taking acyclovyr as I believed I had a herpes infection. I seemed like I had a flu all the time and acyclovyr seemed to help. In October 99 I was in an auto accident. I was not treated but did bang my head and lost brief conciousness. Since then my illness escalated to an alarming pace and at times completely dibilatates me.I went from having one of the brightest business minds in the country to at times getting confused by a mac machine. 1 of my blood tests showed positive antibodies for Herpes6. Although most all doctors discard it as they do not know what herpes6 is. My Mri shows demylation of the white matter. My cervical spine mri shows disc bulges c3-4, c 4-5 and c6-7 with mild central spinal canal stenosis at the c3-4 and c4-5 levels. Moderate sized centraldisc herniation at the c5-6 level which indents the ventral thecal sac with mild central spinal canal stenosis.my eeg sows excessive 20-25 hz 20 microvolt seen diffusely. Spinal tap and blood tests come back normal.
          Symptoms are episodes of extreme fatique,flu like symptons, sometimes constipation sometimes diarhea. I feel like the inside top of my head starts filling up from the back and can feel it move to front of head.When in full bloom I get very confused and get lost driving. I suffer short term memory loss,sight gets real bad,and serious mood swings. At times I become very antisocial and withdrawn. Sometimes my skin turns completely gray. As it has worsened I get a pins and needle feeling below my left shoulder. In last 2 months I have an extreme ringing in my head not my ears. When it intensifies to excrutiating I usually get worse until it subsides. I get rapid temperature changes as I will sweat and then freeze. If I get cold my neck and head shake uncontrllably. I have had 4 stroke like attacks in my face where I look like I am having a stroke but releases and goes away after a couple of hours. I recently had an attack where my neck and head curled down and then my shoulders curled down. I was actually walking looking at the floor. It lasted for 6 hours releasing for a minute at a time 4 times. I have very dark black circles under my eyes.
I have been bounced from doctor to doctor and am at my last straw. I actually feel like if I cant get a diagnosis and or help by 1/1/2000 I would take myself out by the 10th as the dibilataion of my health,finances and added pressure on my family seems not worth it. I do get depression at times but I try and keep a positive attitude. Any help or clues would be greatly appreciated. Thank you

    Ps The ringing in the head must be a key,not in ears in head.
11 Responses
Avatar universal
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
Avatar universal
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.
                        Thanks Ron
Avatar universal
Dear Ron,
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,
Avatar universal
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
Avatar universal
Hi Ron,

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.

Avatar universal

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  
FAX  404-728-3767  
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 ***@****.

God Bless-
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