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EBV/CFS - Could I be in denial?

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Old 05-30-2003, 07:08 PM   #1
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Join Date: Dec 2002
Location: USA
Posts: 165
Renee016 HB User
Post EBV/CFS - Could I be in denial?

I was diagnosed with Epstein-Barr last August after several months of sore throats. My level was 7+ (whatever that means). My doctor said I probably had it for some time and that therefore it would qualify as CFS. I always felt tired a lot, especially with working full-time. In 1998 I started working only 6 hours a day and it helped a lot. But in 2002 I had to go back to working full-time and that's when all hell broke loose, so it seems.

Since I was diagnosed, my life has not been the same. In November I developed weakness in my legs with tingling in my feet and all kinds of weird pains. The back of my knees and tops of my feet get so sore, my shins ache, especially with wearing heals, I have pelvic pain that migrates into my outer thighs and still the sore throats and occasionally some nausea. The weak and heavy feeling in my legs is the worse - at first I though I had MS. I went for all kinds of tests and finally found a herniated disc in my neck that was pressing on my spinal cord, for which I had surgery this past February. I thought my symptoms would go away after the surgery but instead they are worse, especially after going back to work.

I think I have been in denial of this illness - unwilling to accept that this can make me so sick. In my mind I am active, I love my job, I love to cook and read and spend time with my kids but my body just does not want to cooperate. I feel like a zombie all the time.

What I want to know is if there is a doctor that specializes in EB/CFS that could help me at least manage this to some degree. Would it be an infectious disease doctor?

Any advice would be greatly appreciated. I would also be very interested in hearing from anyone with similar symptoms.

Thanks in advance.

[This message has been edited by Renee016 (edited 05-30-2003).]
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
7/03 EEG, BAERS and MRI of brain all normal
7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

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Old 06-05-2003, 11:36 PM   #2
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Join Date: May 2003
Location: Toronto Ont Ca
Posts: 199
Ron HB User

Hi Renee,

Have you had any tests for Lyme Disease?
A referral to an infectious disease doc might be a good idea.

Would I be wasting my time by asking if your doc has tested your Vitamin B12 levels and your thyroid function?


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