Avatar universal

I got X-Rays and 9 Vials of Blood Drawn

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?
3 Responses
Avatar universal
Hello, friend--  has anyone checked your Vit D level?  The bone pain sounds like osteomalacia (adult form of rickets) from deficient Vit D, which leads to low calcium (only your serum calcium will LOOK normal or high).  Ionized calcium should be checked, not serum calcium. Your endocrine system will be trying to salvage enough calcium for your vital organs to survive by leaching it from your bones (and teeth).  

A range below 20 is seriously deficient, 20-30 is inadequate.  Barely adequate is 30 and optimal is a minimum number of 50 up to 80.  If it hasn't been tested, request it ASAP and make sure you get a copy of the test so you can see the number for yourself.  Don't let someone tell you it is "normal".  Go to YouTube and see "Dr. Michael Holick, Vitamin D and Prevention of Chronic Diseases".  You will be stunned at all of the illnesses that result from Vit D deficiency.  To correct a deficiency, you should be prescribed a prescription form of Vit D that is 50,000 iu taken 1xWEEK.  Then take 2000 iu/DAY.  Have your level tested at the end of the 8 too 10 weeks and if it hasn't come up, you may need to get your Vit D by injection.  If your doctor isn't familiar with this info, find a new doc!

Just some of the illnesses connected with Vit D deficiency include arthritis, cancer, depression, impaired immunity, MS, obesity, osteoporosis, rickets (in children), pelvic prolapse (from the ensuing calcium deficiency).  If you don't believe it about the pelvic prolapse and urinary incontinence, just check the April 2010 issue of this magazine:  Obstetrics & Gynecology:  April 2010, volumne 115, Issue 4, pp 795-803, "Vitamin D and Pelvic Floor Disorders in Women:  Results from the National health and Nutrition Examination Survey".  Badalian, Samuel S, MD, PhD; Rosenbaum, Paula F. PhD.  Results:  One or more pelvic floor disorders were reported by 23% of women.  mean vitamin D  levels were significantly lower for women reporting at least one pelvic floor disorder and for those with urinary incontinence, irrespective of age. . .Conclusion:  Higher vitamin D levels are associated with a decreased risk of pelvic floor disorders in women.  (This is because low calcium impairs muscle function including the detruser muscle that stops and starts urine flow.)  

Do you know what turns on your immunity?  Vitamin D

Good luck!
Avatar universal
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.
Avatar universal
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.
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Chlamydia, an STI, often has no symptoms, but must be treated.
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.