abott463's Blog

Another update

So a couple of weeks a go I went in for a set of chest x-rays and x-rays if my knee to try to figure out what was causing the pain. My doctor thought that the chest pain could be caused from trapped air in my chest after the laparoscopy that I had but the x-ray's came back normal, and she thought that I might have to start of arthritis in my knees but those x-ray's also came back normal. Im glad that they came back normal but im am frustrated because I have no explanation as to what is causing the pain.

Today I went to see the Rheumatologist he did a quick exam and told me that I have joints that are slightly more flexable than those of other people and that that was probably causing my pain, and that because of my medical history I could develope rheumatoid arthritis later on in life. Also that I could possibly have the start of osteoarthritis. He also said that it is nothing to worry about yet and to just keep active. So basically I waited over 5 months to be told something that I pretty much already knew and that doesn't really give me an explanation as to why my joints keep popping and cracking each time I move.

I have also started acupuncture to try to help with the pain from the endmoetriosis and so far it is not working to well.

I am still having chest pain and pain in all of my joints along with the pain from the endometriosis, also I still have the pressure in my head and am still having 1-2 nose bleeds a day. At thhis point my family doctor is trying to get me into a new GYN because I do not like the one who I currently have because she has not answered any of the questions that I have had about endometriosis and the treatment options that there are for it. She basically said that my only treatment opitons are to get pregnant, have a hysterectomy, or get hormone shots all of which I do not what to do.

In the past 6 months I have had blood tests, urine tests, a pelvic exam, 3 sets of abdominal x-rays, an upper GI and FT, chest x-rays, x-rays for my right knee, about 8 ultrasounds, a pelvic and abdominal CT, a head CT, and a laparoscoy. All of which have come back normal except of the laparoscopy which showed the endometriosis.

I am frrustrated because there after all of these tests there are still several things that stilll have not had a reason for happedning like the chest pain and the pressure in my head. I just wish that I had an answer to everything that has been going on with me in these past 6 months so that I could get back to life. I have had to drop out of school and have had to stop doing the things that I love to do.

I have a feeling that something may have been missed but I guess I will just have to see if things get better or if the continue to get worse.

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melissaw72

I'm sorry for everything you are going through.  I was hoping the acupuncture would help.  If I can think of anything else I will let you know.  Thanks for posting.

Melissa.

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abott463

Thank you. I am still trying the acupunctre and am sticking with it for now, I am hoping that after a couple of more treatments it will start to work better. If not I will just keep looking for other ways of dealing with the pain.

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tltrotti

Have you ever seen the show Mystery Diagnosis?  If you think you are not getting the answeres you need, find another doctor, if that one brushes you off try another.  Most of the people on the show a dozen or more doctors before they find out what is worng with them.  There are so many conditions that mimic one another; you need to find the specialist that can tell you what you really have.  Not every doctor knows everything; you need to find the one who can tell you what you do have.

I am lucky; to have my doctor.   I have Interstitial Cystitis and Fibromyalgia.  Both of these conditions used to be considered all in your head, and some doctors still believe that.  My primary care doctor amazes me in his knowledge.  I had a bladder infection, after finishing my antibiotics that pain was still there.  I was on pain meds at the time as my gallbladder had died and I was waiting to have it removed.  After removal, I went off of the pain meds and my bladder pain returned.  After testing my urine in his office, they found blood but no infection.  He told me I had IC and sent me to an Urologist.  The first Uro kind of brushed me off and my doctor called him and told him to treat me.  He did one round of treatments and my primary had me ask him to take over my pain control.  He looked at me and said I don't know what you would need pain meds for.  I went straight home and Goggled and found a Uro that had participated in an IC study and went to see him.  I told my doc and he agreed and I bet the first Uro never gets another referral from my primary.  I was sent to pain management and we tried every treatment that is known but none worked. I went to 3 Uros for my bladder and 3 rounds of testing on my gallbladder over a 10 year period before I was correctly diagnosed. 

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abott463

I have heard of the show mystery diagnosis, I used to watch it all the time. So far I think that my doctor is doing a pretty good job at trying to figure out what is going on with me. She has refered my to some specialists a Rheumatologist, and a GYN, which I have arleady seen and so far they have not been too good. So she is currently trying to get me in with a new GYN because the one I have now I really do not like because she ignores all of the questions that I have, the only problem is that it could take a couple of months to get in to see the new one. I have been trying to get in to see my new Cardiologist ( I had to get a new one this year because I am now 19 and could no longer go to my perdiactric Cardiologist) the problem is that they can't seem to find my file, so they keep looking for it so that they can get me in for an appointment. I asked the girl at the front desk if the chest pain I have been having after the surgery back in November could possibly be an infection and she said that it could possibly be some sort of infection and that she would try to get me in as soon as she could once she found the filr. I had phoned my old cardiologists office to ask them about the chest pain and to see if I could possibly talk to my cardiologist or get an appointment but he was away and I was told he would,"t be back of a week, and the other cardiologist that works with him refused to see me because my file was already closed, I knew that if my cardiologist had been there he would have gotten me in for an appointment right away even if my file was closed because that is just the way he is.

Im not giving up yet, Im going to keep trying until the doctors figure out everything that is going on with me.

tlgf1968

Not sure if you knew that, with lupus and mixed connective tissue disease, it is possible to have intractable joint pain without joint destruction. Living proof right here!  [I did eventually develop arthritis, osteoporosis and osteopenia in some joints, though.  They became susceptible due to medications used to treat the symptoms.]

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