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Old 07-10-2004, 01:38 AM   #1
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frustrated0205 HB User
Unhappy Name the symptom, I've got it.

I'm putting this here because I can't for the life of me figure out which category it belongs in.

A year ago I went through a battery of testing to determine the cause of:

tingling in left thigh
weakness in left arm and leg
occasional numbness in left arm and leg
severe neck stiffness and pain in the morning
shoulder stiffness and pain (left side) throughout the day
intense muscle pain behind left shoulder blade
headache
pain in left eye
and when i worked out, the thigh and arm problems intensified.
occasionally my left arm would feel as though the muscle was pulling from the bone.
intense low back pain
and a variety of other things i forget now. all symptoms were not always present; they alternated. at least one each day, but usually two or three of the above at the same time.

back x-rays came back clean
mri looking for ms lesions came back clean
nerve testing, muscle weakness, all those tests came back clean.

i had no fever, no nausea, no swelling or redness anywhere, no strangeness at all. no high blood pressure. nothing like that.

after six weeks of various tests with no conclusions, all symptoms basically disappeared.

now it's a year later.

three months ago, i noticed one morning upon arriving to work that my left hip felt stiff. this happened once or twice a week, and only on the way TO work.

then it started happening on the way home from work. then it was every day. then it was whenever i sat still for too long. usually movement worked out the stiffness. eventually, it became both hips - still, movement worked through the stiffness.

i should also mention that during this period of time [this interim year], whenever i would try to work out, the arm/thigh issues would come back to the point that after three workouts, i'd have to quit for months.

so now it's about two months ago, and the hip pain has become chronic, but still - eases with movement. almost always on left side only, but the right would kick in now and then.

present time - now the left hip hurts CONSTANTLY, and feels hot. hurts to the touch, but isn't red or swollen. the right hip hurts about 80% of the time. they get stiff upon sitting, but movement no longer eases the pain - now walking hurts, never mind any sort of aerobic activity.

and all the symptoms from last year are back too, with the exception of the severe neck stiffness and eye pain.

in addition to the hip pain and recurrence of the old symptoms is a strange sensation along the left side of my body, not unlike a deep, deep tickle beneath the skin. from the top of my head to the middle of my left calf, on the side, is this deep tickle. sometimes it tingles as well, and it always feels stiff.

also different now is that i switched jobs and currently don't have any insurance, which frankly doesn't bother me all that much because five doctors were unable to come up with anything.

in the meantime, my lower body has turned to absolute mush, either from the lack of exercise (although honestly, i've gone years and years with no physical activity and have never experienced degeneration this significant or rapid); i'm widening like a pear from the waist down. in the past two weeks, i've gained ten pounds, all in my midsection, ***, and thighs; since i'm not a natural pear shape, this is quite alarming.

i'm also retaining tons of water all the time; three days a week my legs feel tight and hot.

what the hell is wrong with me? ruptured disk? degenerative spine disorder? rhuematoid or osteoarthritis? what?

ibuprofen does NOTHING for the pain. naprosyn and aspirin alleviate it somewhat, but it is always, always, always there. i paid cash for a doctor on monday, who prescribed vioxx and told me to let her know what happens. i haven't filled the prescription.

also of note is that in 2001, i went through a month of accutane. in 2003, i went through four months. the symptoms started prior to the second course, but definitely worsened afterward. i've spent a year wondering if i did this to myself, but i have recurrent cystic nodular acne [currently not present... for now], and it is SEVERE and emotionally debilitating.

i just really do not know what to do.

i'm supposed to get married in february and at this rate, i'm not convinced i'll still be walking, much less dancing the first dance.

 
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Old 07-10-2004, 05:00 AM   #2
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jill girl HB User
Re: Name the symptom, I've got it.

It seems to me that you need a physician to run more tests, not dismiss you with a prescription when she doesn't even have a diagnosis for you. Be persistant until you find one that can help you. I'm not a doctor, so this is just a shot in the dark, but have you been tested for Lyme disease? I was reading on that board, and your symptoms sound similar.

 
Old 07-10-2004, 07:30 AM   #3
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Re: Name the symptom, I've got it.

frustrated0205, I agree with Jill. I think you should be evaluated for Lyme disease. Lyme can cause a multitude of symptoms and they often wax and wane. For more info on Lyme disease, read the "Lyme Disease Information" post on the Lyme board at this site.

When Lyme is a possibility, it is very important to see a knowledgeable doctor. No test is completely reliable. From what I understand, the ELISA or titer is the least reliable test and the one most doctors run first. A knowledgeable doctor will consider your entire history. Where do you live?

 
Old 07-10-2004, 09:04 AM   #4
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twanger HB User
Re: Name the symptom, I've got it.

You sound like me. Have you considered fibromyalgia?

 
Old 07-10-2004, 11:42 AM   #5
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Re: Name the symptom, I've got it.

Your symptoms are many for Fibromyalgia. However, do not accept that diagnosis too quick, it is the dumping ground diagnosis for what doctors do not know what is wrong. There are legitimate rhuematism miseries but you never hear a diagnosis of rheumatism, they call it Fibromyalgia.

I have had fibromyalgia for many, many years and do not really want to be pegged with that diagnosis after talking to others who have the so called disease who are negative, self absorbed, complaining, hypocondriacs. One of my doctors told me they use fibromyalgia for the dumping ground diagnosis to satisfy hypocondriacs, same as they did with hypoglycemia many years ago. There are true cases of fibro and hypoglycemia but too many people are given the diagnosis because "the doctor does not know" what is wrong with a person and does not have the interest to find out.

Best to find a doctor who is "INTERESTED" in finding out the real cause of your problems, this may be difficult.

I have found that professors at medical schools are more interested in finding out the real cause. Many are in private practice too.

 
Old 07-10-2004, 05:18 PM   #6
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Re: Name the symptom, I've got it.

You said you had Xrays but you did not mention any MRI's or bone scans. Those will give you a better look at the spine. The thigh/hip pain may very well be a herniated lumbar or compressed nerve. I have the same symptoms, thought it was my artifical hip giving out and was afriad I'd need yet another replacement. It turned out that it wasn't its my l3, l4 and l5 being herniated. I have had this problem for at least 5 years now. Just had a epidural steriodal injection which made it worse so I may be looking as some surgery soon (which scares me).

Here's a simple test that most doctors forget to check when it comes to the spine. With your shoes and socks off, on the leg that hurts the most, press your foot upward and hold it as tight as you can, have someone else try to push down on your big toe, your job is to prevent them from pushing it down. If there is no resistance or you can't hold it up you have a herniated disk or pinched nerve. If they can't push it down then it may very well not be your spine.

The shoulder/neck problem could be herniated cervical spine. Again you need an MRI.
My neck was actually misdagonosed last fall, I had extreme arm and shoulder pain, the doctors thought I tore my rotator cuff again and operated, turned out fine. Few days afterwards I lost the feeling in my hands and arms. Turned out c4 - c7 were crushing my spinal cord because the herniations were so large. I didn't have as much neck pain as I did shoulder. I had an ACDF done in Feb.

I would ask not only for a Lyme test but request to have your entire spine looked at. X-rays are far from accurate when it comes to looking for herniations and compressions. I honestly thing you need to see a nuerologist, don't settle for an ortho with the symptoms you have.

 
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