Hypophosphatemia & oncogenic osteomalacia

I never had relief of symptoms the whole time I was on the phosphorus and calcitriol. My bones got weaker and weaker. I've had some luck on this experimental Chemo. But it has not calcified my tumor like they hoped. It is keeping my levels in a normal range. But still no luck for me. The only way to get rid of the symptoms that I am aware of is removal of the tumor. But from what I am understanding each of us are different. I know one man who's tumor mutated a second time and became cancer. No real way of knowing.

Thank you missy for you reply, it explains why I have had no relief. Another question I have is how sever the pain can get for people. I have tryed to look for infomation on the amount of pain a person can have, but have not seen anything about that. I can add that I have lost hearing, can't sleep, have muscle cramps and stiffness in my legs. I would like to here how much pain other people have had and how bad is it?

I have trouble sleeping I wake up to roll over because of the TIO I have AVN (avascular necrosis) in both my hips basically my hips haven't been getting the blood flow they need and they are dead I need a double hip replacement but they can not do it since my bones are to weak. How much pain I think that just depends on the person I've heard of people that were in wheel chairs from this. I have been fortunate and stubborn I am not in a wheel chair or use a cane or anything to help me walk. I have not lost any hearing or vision from the TIO just mobility and flexibility. The muscle cramps could be from your phosphorus being to low I know my potassium runs a little high if I eat bananas I seem to get more u Charlie horses but do not know if that is in relation to the tumor. I can tell you the stiffness is very common because this is attacking the joints. I have an extremely high tolerance for pain though. The good news I can give you is this is not hereditary. My parents and my kids have all been checked. I have degenerative tears in my meniscus' so my knees give me a lot of crap again this is related to the TIO. I've had fractures in pelvis ribs wrists feet ankles legs and shoulder all from minor traumas. I have lost 4 inches in height and can not tilt my neck all the way back anymore. The one thing that helped me was I named my tumor that way when I get really down and soar I have something to yell at making it less phantom to me. But what works for one will not always work for another. I try to follow this forum very close sense we really have no where to turn with this TIO is not even recognized by NORD (national organization of rare disease) I am still trying to get that rectified. Keep me posted as I have said in previous posts I go to National Institute of Health they have done more for me than pretty much anyone except the doctor that gave me a diagnosis. That was a fight in itself.

Missy, the one thing that alot of pleople have and I don't have is problems with my hips. I have had meniscus tears in both knees and had to have a right knee replacement. My right knee hurts real bad on the inside and this started after I had the left meniscus repaired and had to walk different while my left knee healed. I must say that the pain meds make my life better and I can get up and do somethings.I also am sure that the TIO caused some of the problems I have with my lower back. The reason you are on Chemo is because they could not find the tumor?

The scan that I am going to have is bran new and my doctor did know the name of it. I will post the name as soon as I get it and will you give me the name of the Chemo treatment you are having so I can tell my doctor about it and see if the could do it if they can't find the tumor. Also my doctor thought they had some other people will TIO but they all turned out to be something else.

The chemo I am on is experimental it doesn't even have a name yet just a serial number bgj398. I'm on it cause they could not find the tumor they were hoping it would calcify my tumor but it hasn't yet. The scan he may be wanting to do might be a dototate I don't know if that is the right spelling. They did that one on me a couple years ago. I have a lot of compression in my neck and spine. The last dexa scan I had said I had the spine and pelvis of a 95 year old. I still think is a very under diagnosed disease. I've had symptoms for 15 years diagnosis for 14. That's good that you don't have the issues with your helps. Mine could have been made worse by having the pelvic fractures.

Thanks again for your input. I just got a new med, Tizanidine, for the muscle cramps that have been getting worse. Just had a thigh muscle wake me up at night. If you hear anything new please drop me a note. Also don't be hold back on asking for some pain meds. I go to our pain management office at our local hospital, which deals all different form of pain and the reason I went to them was for lower back pain. I made copies of info from the net about TIO so the nurse could read up on it and under stand about the pain it causes.

Will do

Do you people that have TIO have alot less pain in bed and in a chair and does symtoms get worse if the tumor gets larger?

I just returned about 10 days ago from the Mayo clinic in Rochester, Mn. While there they did scans of me and found my tumor that's been causing my problems and Tio for the last six years. it was hidden behind my knee cap and had grown to about 4 centimeters in size. I was on calcitriol and phosphorus to get my blood back into normal ranges. After the surgery and three days later they did another blood test and my blood levels were beginning to move toward normal ranges for the calcitriol and the phosphorus which is a very good sign. These two doctors dr. Tebbin an endocrinologist and Dr Rock the orthopedic surgeon are highly recommended by myself and my wife. if you believe you had tio or you're not for sure they knew what it was. they have diagnosed it before and they've been able to help and treat patients. so I just thought I'd give you a heads-up that it looks like I'm going to be well in 2017 based on the fact that they did a blood test on me that proves I no longer have a tumor to deal with in my body.

Hi,

I have not contributed for a while but I must say it's really good to find someone who has found the tumour and had it removed. I have had no end of scans but none have found my tumour and although I am having the calcitriol and phosphate supplements I am still having problems from damage found before I was diagnosed. My main areas currently are lower back and neck. After five ops on my lower back and three on my neck to relieve pressure on trapped nerves where the spine has compressed they are very wary of operating again. I am about to have another pain block injection but they don't really work for me so I am taking loads of pain relief medication.

My worry is that over time my spine will continue to deteriorate and slowly compress more nerves in other parts of my spine. With very limited research no one can say with any certainty if this will or will not happen.

Regardless of that you have my best wishes and I hope your recovery continues. Please keep us updated with future events, it will give us all hope.

I can relate. In the past 6 years I have lost inches in height as well having to have my hip replaced because the bone died.

I've lived on tramadol and looking forward to being off pain meds. Best of luck to you in the future.

Don

Thanks for your replys. Did and do your pain levels stay the same or get worse even though your blood test were or are normal now that you are taking calcitriol and phosphate? This is the problem I am having. The pain is real bad and I take alot of pain meds, for I have be on them for many years because L-1 to L-5 are bad because of the TIO. My first blood test for FGF-23 came back normal, but I know that this does not mean I do not have TIO. I am going to have a new type of scan done at the Cleveland Clinic in May when they have it setup. If that does not work I will then have a SVS blood test done to help locate the area where the tumor may be located. I just can not find out why the pain is getting worse and my blood levels are okay. I only take .5mg of calcitriol a day and am going to ask my doc. to increase it.

My tumor was found in my ear when I lost some hearing. Have your docs MRI'd the area in your ears for a tumor? Dr. Arts at University of Michigan removed mine.

My pain is the same as before. They took me off calcitriol last week because they are Verifying my levels without it.

I've had full body scans and they feel confident they found all the tumors before surgery.