Paget's Disease?

[toughilou]

I get sudden attacks from my orbits to my feet, and muscle pain and weakness with a feeling of bone-on-bone pain from head-to-toe. It feels as if something is gnawing at my bones, and it feels as if, say, my shinbones, foot bones, knees, hands and wrists, are shattered into a million pieces. I have significant scoliosis and piched nerves in my back. It hurts to lay my forearms down on surfaces, like it is disturbing the meat inside them. I have had these symptoms since I was 28 to 30 years old. I am now 47. To go with this, my new rheumatologist has ordered bone scans and nerve tests, as fibromyalgia is not suspected, as I have no pressure spots where it hurts to touch. I only feel the hell of trying to be mobile when these attacks occur. I do suffer severe working memory deficits, and I cannot learn certain new things at my job because of my immediate loss of memory. Somebody's gonna get sh** - canned if they don't improve their memory, so I have begun doing some brain training exercise 20 minutes a night. I scored an 8 on working memory. I know; that's bad. I have angle closure glaucoma, a low thyroid, gerd, had my gallbladder removed last year, had to get TVTO surgery for extreme urinary incontinance, and my bones may quit hurting in 30 seconds as if nothing ever happened, or they may continue on for days. My Rheumatologist is testing me for Paget's of the bone. He did x-rays and drew 9 vials of blood from me. Does this seem like a possible culprit? I'd sure hate to end up with that, but I want an accurate diagnosis. Thanks, if anyone out there has Paget's of the bone, and this sounds familiar, I would love your two cents worth.

[toughilou]

I just wanted to say that my rheumatologist sent me a letter in the mail saying that I was vitamin D deficient again. I still won't know the rest until the 13th, but he sent me a prescription for 50,00 units of vitamin D to be taken once-a-week for the next 3 months. I took the first pill yesterday and had to call in sick today because my bones hurt so badly. I can't wait to find out what else I'm dealing with. Will keep you posted.

[toughilou]

Thank you very much. :) You're a really cool doctor!

[toughilou]

Gosh! Thank you very much. You're a really cool doctor!

[S. Kaul, MD]

Hi again!

With your symptoms vitamin D deficiency would have been a strong possibility along with endocrine and hormonal abnormalities. For now, it would be best for the bone scan and the blood tests to turn up before a further diagnostic/ management plan can be chalked out. I would also suggest seeing a neurologist and an orthopedician independently to avoid bias, in case multiple factors may be involved. However it would still be better to discuss the situation in detail with your doctor before one drafts a further plan.
Do keep me posted.

Take care!

[toughilou]

Thank you very much for your reply! I am in extreme pain as I type. Have been sleeping much of the day, and must work in the morning. Blegh! I forgot to mention that I have significant scoliosis and was very vitamin D deficient a few months back, but they corrected that situation wih 50, 000 units a week for several weeks. Anyway, I got my bone scan, and the technician said he wasn't allowed to reveal anything regarding hot spots or cold spots, even though I begged him to.

He looked at the images and came back into the room asking me if I had suffered from a traumatic fall or injury in the past year, or surgery.

I told him no falls, no injuries, but had gotten gallbladder out and TVTO surgery. Pretty uneventful, and only needed pain meds for two days.
He kept asking if I was sure about the falling part. I assured him no falls. I had forgotten that I did have a fall, but it didn't hurt as I landed just perfectly, somehow.

He said they needed to rescan my ribs as there was risdual dye in them. I know that's not good.

Anyway, I got my nerve tests done, as well, and they drew 9 vials of blood a few days before that. I heard loud noise in right arm when at rest, but the doctor wouldn't tell me anything, either. The nurse was hush-hush about the blood test results, so I just have to wait until the 13th of September.

Will keep you posted on the results when I get them, and thank you for taking the time to answer.