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Old 12-01-2007, 09:38 AM   #1
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AngelMomFL HB User
Undiagnosed chronic condition-constant spasms in head, neck, mouth, spine.

*This is a full symptoms sheet describing my chronic condition. Please read and reply. All comments/suggestions greatly appreciated. Thank you!!!

I am a 68 year old woman who has an undiagnosed chronic condition that began in approximately 1989 and has become progressively worse. I have seen neurologists, neurosurgeons, pain specialists, orthopedic doctors, rheumatologists, physical therapists, chiropractors, acupuncturists, Ayurvedic doctors, and others. I am desperately seeking alleviation of my symptoms, proper diagnosis, and successful treatment. My family has prepared this document to aid that goal.

UNRELENTING CHRONIC PAIN:
Very painful, strong, sharp, pounding, throbbing, muscle spasm-like pulsations are continually present throughout my head, neck, mouth, and down general area of the spine. What started as a small throb in the back of my head in 1989/1990 has progressed to a severe level. The symptoms below are not independent of one another; they occur together as one continuous force:

General occipital area of head: Extremely painful, forceful, severe, throbbing/spasm-like pulsations that are unrelenting and present 24 hours a day. This forceful internal throbbing is by far strongest in the occipital area of the head. On a pain level of 1-10 it is usually a 7. These symptoms tend to be consistently stronger toward the right side. Although present at all times, the symptoms can vary in level of intensity. Throbbing has a bouncy, jerking, “springy-like” feel and is in synch with pulse. The muscles seem to be in a constant state of forceful spasm.
Mouth/Teeth: The strong, throbbing movement causes my teeth to be pulled together on the right side and sometimes on the left. Occasionally “clicking” is audible in front right teeth. From time to time the right side of my mouth is visibly pulled upward.
Bodily movement: These forceful pulsations cause my body to involuntarily move from side to side, as if someone were pushing and pulling me back and forth. When holding a cup or paper in hand, it is moving/throbbing just as I am.
Spine/Back: The spasm throbbing in the general area of the spine/back is very intensified when I sit with my back against anything. The buttock area can also be affected. Because of this severe pain I’m on my feet most of the day and cannot sit for long.
Temple: Throbbing felt in right cheek up through right temple, occasionally left temple.
Ears: I feel the pulsations radiating from the occipital area of the head up towards the ears. Again, predominately on the right side but sometimes on the left.
Eyes: Occasionally I have an eyelid flicker on right eye and sometime the left. I feel the painful throbbing between my eyes if symptoms become very severe and sharp.
Legs: Sometimes slight tingling, throbbing; “string-like” pulling sensations in various areas
Feet: Occasional, slight throbbing, tingling sensation in feet and toes. No numbness.

PAST INJURIES:
In 1988, I was involved in a minor rear end collision and had a sore lower back after.
In 1987, I fell hard and flat on my back and head on a very hard surface. I had no problems after the fall. Two years after this fall the throbbing in my head began.
In 1985, kicked in lower back during a dance rehearsal; as teenager I broke my collarbone.

MEDICAL MRI’S/DIAGNOSES/PROCEDURES:
Medical doctors have not reached consensus on a diagnosis. MRI’s and other x-rays show osteoarthritis of the cervical spine (C5-C6 and C6-C7) but doctors indicate that the degree of pain/symptoms far exceeds the degree of cervical degeneration seen in the x-rays.
A musculo-skeletal radiologist reviewed MRI’s from 2004-2005 and found no obvious pathology in the brain, although plaque areas were present. MRI of neck showed some moderate disc disease at C5-6, but probably not related to symptoms.
Cervical Epidural, Cervical Facet, and Botox injections have had no effect on my symptoms.

CURRENT MEDICATIONS (*taken together for sleep)
Avinza (30 MG); *Tizanidine (4 MG); *Alprazolam (0.5 MG); *Zolpidem (0.5 MG)

I DO NOT HAVE THE FOLLOWING:
Pain or discomfort in the shoulders, arms, or hands
Sore spots on head or neck
Sore muscles
Joint pain (e.g. no joint pain when moving neck or back)
Restricted movement / restricted range of motion (I am very flexible)
Stiffness
Weakness
Light sensitivity
Nausea
Dizziness
Ringing in ears

DOCTORS HAVE RULED OUT THE FOLLOWING:

Epilepsy
Fibromyalgia
Lupus

EXERCISE:
I walk every day for 30-40 minutes.
This past summer I swam regularly which felt good and gave me some relief.

 
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Old 12-02-2007, 07:32 AM   #2
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Re: Undiagnosed chronic condition-constant spasms in head, neck, mouth, spine.

wow,thats quite a bunch of freaky symptoms.have you only had basic MRIs done?did they ever do anything like an MRA of the brain or did they do the MRIs with contrast?any nerve involvment,like on an EMG and nerve conduction study?this test would check nerve flow and muscle involvement with the nerve flow too.what actually showed up as the most significant findings in any type of test results,just hard findings?if you look at the very end of any MRI in that summary,they would have that listed there.have they mentioned torticollis(not too certain of the spelling)as a possibility?cannot remember all the symptoms involved in that,but just thrwoing it out there as i know it involves the neck and muscle.

just a thought here for you since this was the most comprehensive type of blood study i ever had done.i seriously would seek out a good rheumy doc and have them run the "standard' types of testing they do to try and rule out any and all types of possible inflammatory type conditions that could be creating your symptoms.honestly,the rheumy i saw for my knee mess sent in blood to like every place around the US that does specific types of testing for particular conditions.i know one test went to like kansas,and i live in MN.this was a very thorough type of testing he did,it was actually four pages long and included everything from lyme disease to things i never ever heard of in my life.i was tested,just with labs,for at the very least,about 30 seperate conditions,with all of them of course coming up neg.but i really do think that considering the fact no one can seem to actually explain your out of the norm type pain and symptoms that this would be a really good thing for you to get done.it would either rule out or rule in many possibilities with one lab draw to all kinds of places.this should just be done with your symptoms.are they at least treating your pain and other symptoms properly at this point?sorry i couldn't be of more help to you.please keep me posted on what you find out along the way.i really am wondering too just what could cause all that you are experiencing.good luck, FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-02-2007, 03:58 PM   #3
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Join Date: Nov 2007
Location: Williamsburg, VA
Posts: 296
Rita27 HB User
Re: Undiagnosed chronic condition-constant spasms in head, neck, mouth, spine.

Angel Mom,

I'm sorry for all you're going through. I have a lot of health issues, and I know what it is like to go to so many doctors/tests and still feel horrible and not get any real answers.

All I can say is, for one thing, I would insist on something for the pain. I don't know if that list has anything for pain on it. Also, maybe go to a good hospital and find a doctor that can admit you for testing? They did this for me with my heart/blood pressure issues. At least you are in the hospital and they can do all the tests and you can rest in bed in between.

Have you tried any acupuncture? I heard it works well for a lot of people. Also, have you seen an eye doctor?

 
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