[delandra]

Okay, ya'll are my last hope. I have been to probably 20 Dr.'s in many states and nobody can figure out my problem.
I have had PCOS since age 18 (I'm a 43 year old female).
I have had pernicious anemia for about the last 5 years and take b-12 shots.
I have some weird bone metabolic disorder where I grow osteophytes really bad out of my spine both anteriorly and posteriorly. I have had 2 surgeries on my sternum for abnormal bone growths (last one 2 years ago and it has grown back again)..Soft tissue type swelling now over left breast area (negative mammo and ultrasound)...I have HPV (bad types like 16,18) but last 4 pap smears have been negative.
I have very low Vitamin D now and have started taking pills for that. BAD, BAD acne that I can't get to go away. Very thin hair and neuropathy in my arms and legs. Cyst on my pancreas. Very strong history of diabetes (Father, Brother), first cousin has Lupus. I have worked with radiation for 20 years now and wondering if I have damaged myself (PET/CT Tech)...I can't get anyone to name my syndrome or tell my how to stop the bone growth that are going to eventually puncture my lungs and heart vessels. I have had a partial sternectomy and I'm on pain patch all the time now. Nobody will even biopsy the new growth above chest or in sternum (3rd time grown back).They said it was probably an osteochondroma in sternum after first biopsy. I also have a bone growth below right knee cap that is so ugly I can't wear shorts anymore.
Anybody have any ideas? My next stop is Mayo Clinic and I really can't afford to go there. My insurance isn't very good. Thanks so much!

[ConsiderThis]

Hi, you sure have a lot of things to deal with. With all of that it must also be a daily thing to keep your spirits up. Health problems are so wearing... at least that's how I find them.

Okay, so you didn't mention how often you have b12 shots. I had a huge amount of improvement when I was having a shot or two a day.

Now I use several 5mg methylcobalamin lozenges a day... so much nicer than shots.

The other thing that has made quite a significant change in my life is magnesium... I used to get this Women's Health Newsletter that talked about magnesium a lot. The thing it pounded home for me is that if we take a lot of calcium without magnesium to balance it out, the calcium can cause bone spurs rather than strong bones...

I try to take magnesium every time I eat something with calcium in it...

((((((((delandra)))))))))))

[ConsiderThis]

I was too tired to come back last night when I was thinking about how no one else had responded to you.

I think the problem is "syndrome" -- I remember when I first was learning to distinguish my post traumatic stress. At first it was called "post traumatic stress syndrome" with the implication, I felt, that if I didn't think about it, then it wouldn't be a problem.

Later it became known as Post Traumatic Stress Disorder, and that seemed to imply that it was a legitimate complaint.

I would be curious to see what happened if you wrote another post replacing "syndrome" with another word, or set of words, conveying a problem that is generally taken seriously by the medical community...

[rumpled]

Have you explored endocrine disorders?
The problem is most endos are idiots and treat you like dirt, but you need to get someone decent because you have a systemic disorder.
Lots of things you mention sound like endocrine disorders.
Have you seen a bone endo?

[Jomar]

I was wondering , what about writing to Mayo with all your symptoms and ask if they will take you on as a test or study case??
Or possibly any learning or teaching health center?
Also possibly a homeopathic/naturopath dr?

[Idealist]

Hi, Delandra! I strongly agree with Jo. A University Hospital would be your very best bet, but I've been there, too, and there is one thing you should be very aware of. If you go to a place like the Mayo Clinic, and they flub your dx, you may be stuck with a wrong dx for years and years, because nobody else wants to contradict the Mayo, or the Hopkins. I've been in contact with both, but haven't actually been to either. Don't give up! I've gone seven years now without a dx for my "sydrome?!?", and just now I seem to be getting somewhere. And guess where I got the info? Here on NT, but after a few years of hanging around studying these things and listening to people. Whatever the future holds, I wish you the best of luck!

[Buffheart]

I don't know what to say, except that I hope things turn around for you!


P.S. Idealist, I thought your siggy said "I am an idiot" not "idealist"!

[Idealist]

An idiot, huh? Well, maybe I'm that, too.

Delandra, if you are seeing any of this, I hope it is helping! Are things going anywhere?

[pearl girl]

Hang in there, delandra. You won't find your answer if you give up. Maybe you will find it here. It has helped me in my health and in my heart. I do understand your frustrations and share some of your issues. God blesses you even when you think he doesn't. love, love, Nancy

[delandra]

Originally Posted by rumpled

Have you explored endocrine disorders?
The problem is most endos are idiots and treat you like dirt, but you need to get someone decent because you have a systemic disorder.
Lots of things you mention sound like endocrine disorders.
Have you seen a bone endo?

I have seen a few endocrinologists and bone specialists but still, nobody has a clue what my problem is...Very frustrating. I do appreciate everyone who is taking the time to respond to my problem. I read them all and take them to heart!