I got the results from my doctor and my bone density is fine. She said that she didn't know what the surgeon was talking about then. I said that the surgeon told me my bones were soft. He felt them. He couldn't use the regular screws but had to use the screws for soft bones. My regular doctor just said that my tests turned out just fine. I told her about Celiac.com and that even though I didn't know much, I had heard there were times that the bone density test was fine yet the person had soft bones and that there was a biopsy or some other test that was needed. My doctor was not aware of any biopsy for a test for soft bones. I requested to see an endocrinologist since that is what was mentioned in our forum. She said there was none in town but if I wanted to find one in another town she could refer me. So, I went to my insurance and found a doctor about 300 miles away and will give that name to my doctor. My doctor said it usually takes 3-6 months to even get in and see one.
I have soft bones and a broken ankle from just falling. I am MS and bad balance. I think I need to see a specialist. I just want to have some treatment before my bones become weak. Has anyone had similar problems?
It is interesting about the enamel problem. I have always had problems with thin enamel on my teeth. I am not sure of some areas are thinner than others. 3 of my children (now grown) all have my type of teeth. Poor kids had so much pain and dental work done when they were small. Now I have grandkids and I know that at least one of them also inherited this problem. I have MS besides Celiac. I have not thought about the correlation between the two. I will contact my children and mention it in case they would like to mention this to their doctor.
I went to the doctor and YAY! I did not have to have my foot reset or shaped or whatever the painful thing is when they bend it how it is supposed to go. Instead, it was doing well. Looked great....well except for the long hair under the cast (Yuk). I have a brace on my foot to be treated like a cast. Now I can ice it better and that felt so good. I cannot bear weight with it for quite some time. The doctor kept to himself on that and I see him again in 4 weeks. Probably a wait and see. I will have to have my leg elevated above my heart for maybe another 4 months, if I understood correctly. Found out I had another break I didn't know about so it was a triple something break. He said even with my bones the way there were it was just because I landed on the floor in just the wrong way.
I asked about the personal trainer and weight training exercises and he said not at the moment. That would be later on. Only if I really wanted a physical therapist then he would OK that but he wanted me to take it really easy right now even though it is hard for me to build muscle. He said I could do some leg lifts or something which I have been doing from the couch & wheelchair, etc. That was enough for now. I guess the fracture was a pretty bad one so I better do as he says. But the ankle is healing good and I had quite a bit of movement and he was happy with that. We'll see how it goes with the brace because this holds my foot much more secure. Soooo heavy. But may build up more muscle. At least I can ice it and wash off my leg, etc.
I asked about an endocrinologist, or who should I go to so I can get started on overcoming this soft bone condition. He advised to go to my primary care physician and have her choose from there. Sounds wise. Also, my neurologist will be given copies of all of the reports, etc. So, even though it doesn't sound like much, I'm happy because it is the assembling of my own little team ready to go into motion. They just don't know it yet. It made sense about waiting about the personal trainer. Since he wasn't really encouraging even the physical therapist, I feel he was just wanting me to take it easy, like maybe he saw I can tend to overdue at times.
It was very nice to talk to a doctor and mention the Celiac and by his reaction it was a very normal question and he thoroughly understood where I was coming from. It is sad but we all know there are some doctors that can make you want to clam up and not say anything, the roll the eye thing. I was happy say there was none of that. Also, when I mentioned the stopping of the estrogen because of the breast cancer scare, he was listening very closely. So, I feel in good hands. It turns out that even though the bone was soft, the special screws he used held well. That was good.
Now, my next move is to call and make an appt with my primary care physican, see how she reacts , where she sends me, and what tests she orders. I will then go the orthopedic surgeon in 4 weeks, then the following week I'll be down in another town about 300 miles away to my neurologist for an MRI for my MS. When I talk with him it will be interesting how the Celiac / MS / soft bones all connect. Especially it will be interesting how they connect with the different doctors viewpoint. I should include the 4th doctor here, since I also see a chiropractor. He is the one that more or less "made" me get out and start my walking program. But that will be a subject of another post. I'll also continue some arm chair & couch exercises and see what I can do. I do ballet conditioning exercises and I might get out the DVD and see what it is like to do while sitting down. Never thought of it. I can probably adapt it easily.
Thank you all for your help & encouragement in my posts.
Yes, I will absolutely post what my doctor tells me, anything that might help anyone. Please check my posts again and give me some tips. I am new to this and never worried about bone problems. i didn't realize Celiac was a risk factor. Now the education begins.......