Hello,
I have been reading many of the messages here and my heart goes out to all of you that are suffering.
My story: For the last 18 months I have been a medical mystery. I've been running a low grade fever (100.2 -102.0), lots of heart arrhythmias (VT & PVC's), weight loss, vommiting, diarrhea, abdominal pain, headaches, cough, numbness in arms and legs, hair loss, dry eye, dizziness, memory loss, confusion and joint pain. The joint pain in my back and knees (the only ones examed) the Ortho. called arthritis. I have also had a episode of avascular necrosis in my left knee. I have pain in the joints of my shoulders, elbows, hips, knees and low back.
Within the last three weeks 6 joints in my hands have swollen (they are red and warm at first) and are painful and just this morning a joint in my right toe is swollen and painful. M.D. say it's probably a connective tissue disorder she just can't figure out which one. I did go to a rheumatologist who before she examed me or talked to me about what was going on said, "Are you depressed?" My answer was, "Well with questions like that I'm getting there." About 6 months ago she tested my ANA and it was neg. in fact all my blood test so far have come back neg. I feel so frustrated. I can't use my hands for most of the things I love and now I'm worried walking may become a problem if my toes follow the same pattern as my fingers. Some nights I spend shivering with chills on the couch, overcome by pain wondering if I should call an ambulance
Can you please share some of your stories of diagnosis with me and let me know if this process is normally this frustrating.
ogreat - your story is my story - you are in the right place with the right people at the right time. Don't give up, don't give in - just spit in their eye and keep searching for a doctor who will believe you. Perhaps you could ask another rheumatologist to just start you on medications like a DMARDS, or a cortisteroid, and see if it helps you, just to alleviate your suffering, even if you don't have their "scientific" test results to fit into. What do they care? It's just another script for them to write out and what difference does it make to them? And if it works, they are heros! It's all gotten so backwards and out of hand, that logic won't work for you here. Best of luck. The rheumy told me I have AS. (Anklyosing Spondylitis) I'm waiting to get all my ducks in a row so I can start Humira.Hi ogreat , along with AS those symptoms could be hypothyroiditis . have you had the thyroid checked? have you had your sed rate and crp checked they show any inflamation?. at least you have been able to get the diagnosis of AS . My husband has AS and suffers a lot of pain .nobody wishes that on you but to get a diagnosis is a huge relief to know that what you are feeling is real. all the best Ally
I truely understand your pain and the frustration of not being diagnosed. It was eleven years ago when the first symptoms started appearing. Or so I thought. I had been doing some gardening, and woke up to my hands feeling like someone was spliting them in half bone by bone. I went to the bathroom and looked at them and the swelling scared me to death. At this point I had never heard about arthritis, but I did have psoriasis from the age of fourteen. Nobody put any of this together, and just said it was blood pressure, and did not persue it any more. As the years went on, and the symptoms got worse. I was referred to an RD in town in 2004, and they did all the sed rate, and RA tests, and tests for Lupus. The RD put me on Plaquinil and it was all going good until I had a reaction to the plaquinil. The RD without going any further into my history, said "come back and see me when you are really sick." So, I said forget that and went on to ignore the pain. I had two knee surgeries on my lft knee, and the orthopedic surgeon looked at me and said, "have you ever been dX with Lupus." So I told him my lame story. He said, we need you to look into this, because if you keep going on like this we will have to replace your knees very early in life. He said I am sure you have an arthritic disease, now let's find out which one. I cried for about two months, but did not want to go down the same path again, just to be humiliated. I also knew there was something wrong and had been wrong since 1995. In September of this year, my dad died at 61, and I started reading his symptoms and how he could not get Crohn's under control and the psoriasis. I told my mom, I need to go back and find out what is going on. I was not seronegative for RA, but my rates were not high enough. The RD, who practices 45 minutes one way from my house, said we will find out answer, because you are going to lose major use of your hands, etc. WE worked for over a month and in this time I had a huge breakout of psoriasis. He asked if I had this for a long time. Yes, so I have psoriatic arthritis with major problems with my eyes, back, knees, ankles, and feet. Psoriatic arthritis is like having fibromyalgia and arthritis all in one. My joints are sore, but the worse my joints get the worse the tendons and ligaments get.
That is my very lengthy story only to say, don't let anyone talk you out of your symptoms. It may or may not be arthritis, but it IS something. We pay doctors good money, and they need to work for us, and if they don't there are plenty out there.
Take care and be blessed.
ogreat -
I found something that helped me tremendously. Its called MonaVie - a blend of 19 fruits full of antioxidants, phytonutrients and other stuff. I got it from a woman at www.mymonavie.com/dwatson. It worked great for me, let me know if you have the same results.
Ogreat I know what you are going thre my son had lived with pain in his back and hips for 5 years and they keep saying pulled ligament or muscle. The pain has been so bad the boy couldnt walk.I went in to the doctors office and demanded that something be done. They sent him for a MRI and their laied the answers but to a reg doc the wrong answer. He then refered him to a Rheumatologist. He walked in looked at the MRI films and then did a few simple steps and in 15 minutes came in and said I know what is wrong My son had As ( Anklylosing Spondlitis). They put him on Enbrel and even help get the insurance togeather and he has been on it for 2 years. we took him back to his Rheumtologist and made a commet about snesitivity to light . He immediatley sent him to a specialist and found out that their is a eye disease that can go along wiht AS and he has it now so I am gate fully that he picked up on it. while it is in stage 1 stage 4 is the worst. You have to get in behind some of these doc and make them do what you need.
I hope all works out well for you.
Thank you justsaynoemore. I appreciate you words of encouragement. It's sometimes hard to stay stong when you feel like crap. I put a call into my M.D. for another appointment. She is on vacation right now. There has been a rheumatologist recommended to me, the wait is 3 months to see him. I'd like to see him when things are really bad like now but who knows what will be going on in three months. I asked my current M.D. in the past if I can just try some meds to see if they help and she said that she needed a diagnosis because the meds for Lupus and RA can sometimes be as dangerous as the disease. I know there is a light at the end of the tunnel. I just hope it's not a train.
Hi Ogreat, I hate to see people suffer...My pain started years ago after the birth of my daughter. When I would wake up I could barely move my fingers. I would wake up in the middle of the night after the slightest move and it felt as if my hands were breaking! My knees which have bothered me since my teenage years had become worse and worse. When I mentoned certain problems to my GP she said I was "Probable just under a lot of stress" Well; yeah, sure I was but stress didn't cause the problems I had.
By the time I referred myself to a RD (my insurance didn't require a referral) I could barely lift my arms above my head to brush my hair and I could barely tie my own shoes! The doctor said "What took you so long to come see me?" She dx'ed me with RA before my blood work had come back from the lab. Some doctors have to see proof in blood work and other's like my first RD know that RA and other simular illnesses have many other criteria. My blood work even to this day doesn't show anything except an elevated SEDS rate. My x-rays do however show changes found in RA patience.
Don't give up. There are over 100 different types of arthritis. I have RA and OA but there are a lot of other kinds that MIGHT explain your joint pain. Don't give up.....you aren't crazy and you know better than anyone that what you are feeling isn't right. Hang in there.
Welcome to AI. Hope to see more of you here.
Well I made the appointment on Wednesday last week and was able to see the M.D. today due to a cancellation. He said things like, "Seronegative spondylarthropathy and Inflammatory Bowel Disease, " and ordered more blood tests. He wants me to take Prednisone to see what effects it has on my joints.
I see him again in two weeks. It feels like I’m in the right place and I'm hopefully that his skill can bring me some relief. Do any of you out there have more information on seronegative spondylarthropathy? I did a web search but the explanation I found was rather vague.
Lovie, thanks for your encouragement. It's good to hear that others have stumbled down this rocky path and made it through.