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Old 06-06-2003, 01:53 AM   #1
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14allall41 HB User
Question HELP ME PUT A NAME TO MY ILLNESS

I am posting this on several of the Illnesses Boards on this website looking for an answer to what is said to have no answer by several Therapist, Medical Doctors, Psychologists and Psychiatrists. I have had tests for everything imaginable all showing nothing causing my symptoms. My sleep analyst showed a little anxiety, my psychological evaluation shows depression but with these daily symptoms that is justifiable and my MRI examined by a Neurologist is clear of the Head and neck area. I have had thyroid, lupus, etc. And a lot of lab and stool tests. These are new tests done after an episode of going off of Xanax levels to fast being lowered by fast reduction of Serzone and having been in a Coma state of Hallucinations that I thought I was awake and walking around sick the whole time for 8 days while I never left the bed. I had been sick with throat disorders and fevers of 104 plus and stomach problems for approximately twenty-three years for which tests drew no conclusion of diagnosis. I was strickened with severe panic attacks for the last seven years and became completely disabled the last two years of the seven. I had my first panic attack 20 years ago, but did not know what it was and being a Manager of a large Company said nothing to anyone, not even my wife. After 13 months of continuos weekly Therapy and bi-weekly Psychiatrist session by a County Mental Health Clinic, I was found to be totally non-delusional and diagnosed as cause by PTSD for the panic attacks and mild depression. I am currently with a very fine team of Doctors at a VA hospital and they keep wanting to put me on an anti-psychotic drug. Not because their test show that I am bipolar or manic, just to deaden the pain and suffering that I go through everyday. I do not want to do this because thus far I am still clear of mind and basically have all of my mental skills that I have learned. I actually have learned a lot more in the last couple of years constantly studying panic attacks, seizures, bipolar, depression, drugs and basically anything concerning mental and physical health that may give me an answer for all of my symptoms. My answer from all of my doctors of all fields has been that there is no one that knows enough about the brain to diagnosis my illness that shows in no test, because no one knows enough about the brain to do it. They stated in cases that they have seen like mine, the patient has gone blind, become paralyzed or worse and that I should try to stay calm. I am past the point of panicking and I do not require stress or anxiety to have daily symptoms or major attacks. They come when they feel like it, I have no control and I just lay down and let them pass. Maybe someone out there can shed some light on this. I am not afraid to hear the worse, so don’t hold back, I just would like an answer and hopefully a name for what I have. Below is a list of my symptoms:

Everyday !!!!!!!
Dull or sharp pains mainly deep in the left side of my head.
Pains in my hips, calves and primarily in my ankles and feet.
Muscle spasms in my chest, abdomen, shoulders, neck, arms legs and feet.
Sharp pains in various places on my body, sometime in two different specific areas at the same time that seem to relate to each other.
Sharp pains as though being stuck by a needle and when I push lightly on the area I get a pain in the back of my head.
Stomach bloating and a strapping feeling over the abdomen and lower chest area.
Pains in my left arm muscles and sore to the touch.
Shoulder and back pains
When bending over upper vertebrae from top of my back to back of head at the neck feel and sound as though they are spreading apart. Lower vertebrae do the same when bending over also.
Joints in hips sometime when turning seem as though they are sliding in the socket and I get sharp pains.
When lifting sometimes as little as a few pounds, elbows and shoulders fell like they are going to pull out of socket. Sometimes a coffee cup is to heavy to hold.
Numb feeling in face, lips, arms, basically anywhere is possible. Electrical tingling sensations also
Body temperature runs a couple of degrees lower then the first 40 years of my life.
Hot flushes and cold sweats, but always tend to be colder then others.
Heat, or hot shower water tends to make the left side of my headache.
Constipation, abdominal spasms, other times going 10 plus times a day
Dents have begun appearing more prominent such as at the top of my socks where the elastic has been and there are lines where my glasses arms against my face are at least three inches long and 1/8” deep or more.
I wear my glasses about 3 / 4 of the day and not at night and they are not to tight.
Weakness, fatigue and the need to nap. Dizzy if I hold my breath for 5 seconds or more.
Sexual side effect, I can go for a long time now, I don’t know if that one is good or bad.

During attacks:
Chest and body cramps diagnosed as seizures
Electrical shocks from head to toe
Warm body flushes usually starting in the lower abdomen area, spread over entire body and heating up to the point that I actually feel as though I am engulfed in flames and burning alive. Just when I think I will pass out or can’t stand it anymore, my body cools and like a roller coaster it starts up again.
Feelings of fluids being released in the back of my head and other strange sensations.

Drugs:
Every 6 hours: 1mg xanax and 300mg neurontin
Morning: 20mg celexa and an aspirin

There is more but it is hard to remember them all and there is always something new developing. The doctors say my brain is playing tricks on me and there is no cure or diagnosis. Any help will do and I am sorry this is so long. Thank you very much for reading this.

A Friend without a name for his illness

 
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Old 06-09-2003, 11:32 AM   #2
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katastrofic HB User
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Have you checked for Fibromyalgia? I know a lady who has it and alot of those symptoms match up. I would be surprised if they haven't already checked for that. Alot of your symptoms also sound like side effects from the drugs you are taking. You have been living with all of this far too long. I suggest you take that list you posted and try a new doctor.
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Old 07-26-2003, 08:03 PM   #3
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Renee016 HB User
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Chronic Fatigue Syndrome can be very debilitating - especially with Fibromyalgia and along with all the medication that you are taking, which may cause more side effects. Also, have you had an MRI of your spine? Lesions and/or badly herniated discs that could be pressing on the spinal cord would cause numerous symptoms - especially in the thoracic area.

I know how frustrating it is trying to get a diagnosis - sometimes you pray they find something so you and everyone else knows your not crazy. Just keep doing what your doing - research and stay informed.

Hope you feel better.
Renee
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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 07-31-2003, 03:21 PM   #4
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painsucks HB User
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I agree with katastrofic, check for fibromyalgia. I was diagnosed with fibro about 10 years ago, many of my symptoms match yours, especially the feeling that to me is like an electric shock or a power surge. I too have the weakness, tingly and numbness in my right side, the constipation one day and the diarrhea the next, etc., etc. When I first stared having all these symptoms, my doctor thought I had MS but the test came back negative. You mentioned being tender to the touch, in diagnosing fibro, there are 18 specific tender points that are used as part of the diagnosis. You don't have to be tender/have pain in all 18 areas, and sometimes you will have the pain and tenderness in different areas at different times. Anyway, check into it and good luck to you.

 
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Old 08-08-2003, 02:11 PM   #5
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picas HB User
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Hi painsucks and 14allall41!!!!

Can you please elaborate on the electric shock type pain you have??? I also have them.. how long do they last?? How many do you have a day?? Does the weather increase these shocks??? What kinda medication do you take for these shocks? What do the Docs say over there in the states??

Oh and 14allall41...try looking up Fibro and myofascial pain. Were you in a car accident?? How did this pain start?

picas

 
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