Who Do You Ask When Your Doctors Are At A Loss

I went in for my last checkup and we have hit a wall, during 2012 I had some major changes going on in bones throughout my body from bone loss to bone growth with muscle mass loss and even some detachment the added bonus of multiple infections n tendons not helping anything at all I'm sure, but the worst part of all of that is that the doctors do not know why. They have no answers so much so in fact that at my last stay in the Rheuma Klinik here in germany my doctor had nearly every other doctor in the place parade through to take a look and still no answers but a lot of questions and a request for permission to allow a class of med students to come in to have a look. Its been rough to say the least.

So where do you go when the doctors have no answers what rights do we have to request other specialists and how do we even find out what specialists we would need to seek out...

My right leg is losing muscle mass and the muscle is detachting due to bone loss and deformation my ankle now so thin I can nearly touch my index finger to my middle finger around it. The Pain in that hip, knee, ankle, and foot has been off the wall crazy.

My right hand has also been hit with the same mysterious bone loss and yet new bone growth in my thumb, the tendon is infected and my middle finger is now in full blown dactylitis swelling I am due in for a surgical consultation this month my rheumy is considering removing a carpel and two metacarpels he also mentioned burning the ends of nerves to stop pain, both of these these options are not any comfort to me as it would mean being away from my family for a few weeks in the hsopital, the doctor can give me no guarantee that these will solve the problems, and to be honest I am terrified of yet another surgery as more than once surgery has been a traumatic experience for me and my family.

So now I turn to you... anyone else here have or heard of similar issues, if so what treatment options are out there? and finally who tests and treats these problems? We live in a small farming village in Germany with only one rheumy in a 5 city radius and the major hospitals all a few hours away so before I go on a fishing expedition with my questions to specialists I'd like to actually know which ones it is I need to be seeking out.

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you sound like me....great to live in country but there are a lot of negatives when it co! mes to health issues. I wrote to support group for my disease , lupus. My nephew has yours..so i read here just to keep up for him and myself on his possible life choices down the road or now.

So far the Lupus Foundation has found me doctors that can help and i thought i was going to still travel far...so wrote the main office...and behold they gave me name of specialist not too far..within two hours. Much better than 4 or more! So that is possibility and hopefully someone can tell you about non profit group that is there to help people with your disease in your area, Germany or What other Country you are near by too....if you can cross over with your insurance.

Your Doctor should know...or just Google it . I wish you the best in your search and your health! loree

Thank you Loree

Actually when I first became sick I had no psoriasis or other skin issues nearly 12 years ago the doctors then dianosed me with lupus over the years no treatment worked and nothing fit and even now with PsA finally diagnosed there has been no relief I have tried every biologic used in the treatment of PsA and MTX and many others until finally breaking down to full out chemo all of the above kept landing me in hospitals with various infections most were lung related. The photos I added to this post were to help visually to see if anyone has something like that going on. I am american but live in germany the insurance we have here covers really any specialist but we dont even know what kind to seek out but the tip to cross reference is a good one and I will be contacting them again. I am a member of the german rheuma league so I will also write them.

My husband has had psoriasis all his life so when th doctor diagnosed me with PsA we thought he had gotten our files mixed up as I had no skin issues until 2 years ago after the birth of our daughter and now major psoriasis but only on my head. My husband sees the doc on the 6th a few weeks ago he got tendonitis in his achilles tendon and now pains in a few more areas with swelling and so on our hearts are broken we had all our hopes on him not developing PsA as I am already cane and wheelchair bound, hes got a job he loves and we have a small army of children who we not too fear getting this dreadful disease they are 16, 15, 13, almost 4, and 2 .... Not being abe to pick up my little ones because of the pain I am in really struck a chord with me and spiraled me into depression my oldest children no longer having their cheerleader mom who taught them cartwheels only a few years ago now having mom who cant even go for a walk was even harder until my 15 year old wrote a story for class about his hero, he wrote about me, I bawled like a baby lol, he may never know how much that meant to me but i hope one day he can understand. The tell their little brother and sister stories of when they were little what mom used to do with them places we would go and so on, I think in part because they miss the mom I used to be bu also so the little ones will know how much this disease has changed the dynamic of our entire family. I am very proud of all the strength and courage my big boys ave shown since I got sick. They have been to doctors visits and for bone scans and to pain clinics they took it upon themselves to get informed. Even though I never asked them to they still took over a lot of responsibility at home with things like each vacuuming 3 rooms of the house so that mom doesnt have to, they are a blessing, when i think that one day they to may face this disease it breaks my heart, one of the reason I have joined case studies and medical trials and so on I am hoping for a cure or at least guarantted treatment options. I would not wish this disease on my worst enemy. Anyway I am a bit hyper had 3 150mg shots of cortisone yesterday so I probably should not keep writing as I am now rambling ... Prayers and positive thoughs to everyone <3<3<3

I feel for you and your worrying health problems. I also live in a remote location. I live on an island with its advantages and disadvantages. I once saw a specialist for diagnostic purposes. This was when my doctor could not tell me what was wrong with me. This was in Australia where I live. At the time I had several different symptoms that my General Practitioner doctor couldn't work out the reasons for. This doctor was called a Specialist Physician. It wasn't much help to me, but at the time I considered it worth a try. You might have more than just PSA happening to you.

What I have discovered is that over time and with my perserverence and persistance that I have got to the bottom of most of my symptoms. Sometimes with many years in between of not knowing and not receiving the best possible treatment and having my symptoms misdiagnosed is even worse.

It is difficult to shop around for a doctor when you live in a remote location. I have been going to the same doctors surgery for so long now, I have outlasted many of the doctors who come and go every couple of years. Each time there is a new doctor it is a new opportunity for review with fresh eyes. I keep on doing this until I am satisfied and convinced it is the right diagnoses. The internet is a good way to check up on your doctors diagnoses, but I don't think it is good to try and self diagnose from information on the net. My symptoms would fit so many health problems and I don't need to worry myself unneccessarily. I do sometimes print off pages off the net and take them to my doctor especially when he can't find the answers. Then it can be checked out or ruled out. Sometimes it is more about ruling things out to narrow down the possibilities.

In my opinion, the trouble with Western medicine is that they want to categorise each ailment separately and don't look for the connections, instead of say Traditional Chinese Medicine for example. There are many other types of medicine practiced in different parts of the world where they look at the body more holistically and don't get so hung up on names for ailments and focus more on your symptoms and what might help your body.

Some of my thoughts and experiences for you to ponder over. I do hope that you find some help soon.