I got X-Rays and 9 Vials of Blood Drawn

[toughilou]

I have been in  pain for years. Bones hurt. The only way I know how to describe it is that it feels like they are being eaten from within. It sometimes feels like bone on bone pain, like my long bones are shattered. It's safe to say that all of my bones are affected, including my orbits. Muscle aches. It feels like laying my arm on surfaces disturbs the meat inside.

Migraines come with attacks. Like, wedges  between fingers, like toes could break, tops of feet, and bottoms kill me, tears in the in the bottoms of feet, felt like my knee almost bent backwards and nearly broke just from walking. Knees hurt so badly. I can do nothing but cry. Nerves pinch in back and hips. Left leg shorter. Right shoulder and hip higher as a result. Left foot bigger. Born pigeon toed and knock kneed. No heat or swelling in bones, except pitting edema in shins, and a bit of swelling from fluid in knees, and I can sometimes feel where under breasts and around ribs, it's filling with fluid and tightening. That's a weird sensation. Parasthesia near upper left spine and into side of neck. Significant scoliosis.

TVTO sugery for urinary incontinence. Best thing I ever did! Doc said fibromyalgia, but there are no tender spots, just aching like severe flu. I humiliate my doc because he can't figure out what's going on. I dismissed him after 14 years of no diagnosis other than depression. Depression?!? Pffft! I go in there crying because of the pain, not because I am depressed! GERD since the mid 90s. Hypothyroidism. I take meds for these, but not pain. I have lost 43 lbs to try and halt the bone pain, but it is getting worse. Angle closure glaucoma. Severely vitamin D deficient. Not anymore.

Here is my question: If Rheumatologist gave  x-rays and drew blood, and is now sending me for bonescans and nerve testing, it is probably because he has seen irregularities in the x-rays, isn't it? I asked what he would look for in  bonescan. He said Paget's. Does this sound like a possibility?

[toughilou]

One thing I found out is that I am definately vitamin D deficient again. You were correct. I still have to wait to find out the rest of my results, though.

[toughilou]

Thank You so very much for your reply! I was extremely vitamin D deficient a while back, and my doctor did get my levels back up to normal with the exact dosage you mentioned, and the new doctor said the levels are normal again, but there has been a new wave of attacks. Maybe they found and fixed the deficiency too late.

I got my bone scan and 9 vials ofd blood drawn, along with nerve testing that will reveal any muscle or nerve impairment. I won't have the results until the 13th of September, but stay tuned and I will keep you posted.

You are an angel for giving me this valuable info. I knew about some of it, but not the incontinence part. I do have the bladder of a girl, now.

The tech said he could not reveal anything to me regarding hot spots or cold spots on the bone scan, because he wasn't allowed to, but he looked at the images and came back in the room asking if I had suffered a traumatic fall or injury or surgery in the past year. I told him no falls, no injuries, but had gotten my gallbladder out last year in November, and this year had gotten TVTO.

He said they needed to rescan my ribs and back behind the ribs, as the dye was still present there. I know that's no good.

All I can do for now is wait. My doctor's nurse called me back and left a message because I was alseep from the pain. She said she wasn't allowed to give me the results, either. She said my rheumatologist would review them with me when I came in on the 13th.  Again, thank you for caring enough to share.

I wanted to leave a record of my unusual symptoms because they don't really seem to meet the crteria for any disease I have read about, thus far, and I figure that's why it has been so difficult to diagnose. This will aid doctors in the future if they ever run across another patient like me.