Well, not even sure what to say right now. That stupid doc from the U of M called a few minutes ago and said all my blood work, 22 vials in all, was just fine. He said I do not have an autoimmune disease nor does he think there is anything really wrong with me. I kept asking him than what is causing all my symptoms and he just said I don't know. I asked him who I should go to see who might know and he said my regular gp. I proceeded to help him that while she is a wonderful doctor, she is the one who sent me there in the first place!
Did he take into consideration that you might be steronegative? Im soooo sorry that the dr said there was nothing he could do. Big gentle hugs to you hunOMG, I so sorry. That's really frustrating. Have you considered consulting a
different kind of doctor? In Vancouver we have all these private health
centres that are holistic (they all have names like "Ubiquity Wellness
Centre"). If you go to one of them, do YOUR HOMEWORK first. Also, maybe
see a naturopath? I haven't seen one of those myself but it's on my horizon.
I'm just trying to come up with some options so you won't feel so stuck!
Michele, I'm so sorry these short-sighted doctors are giving you the run-around. I'm sure you know that there are health problems that do not show up in blood work. Sure, it's much simpler for everyone if your blood tells them exactly what is wrong, but it isn't always the case.
It can take years to get a proper diagnosis, sometimes. It is just a matter of finally getting the right doctor or team of doctors, who don't give up until an accurate diagnosis can be made
Please try not to get discouraged. (I know that's easy for me to say). Do you have a GP that you trust? Or even your Rheumy? Ask what else it could be, if not RA? The health issues in your signature line were diagnosed, weren't they? It's possible that those things are causing your pain.
If the doctors you have now can't help, ask for a referral to someone else. Have you see an endocrinologist? That might be something to look into.
I hope you feel better!
Big hugs,
Nini
Aww, Michele, what a dissapointment. I am so sorry. I have a wonderful RD who is also certified in pain management. Very caring and looks at more than blood tests. If you want to come east and see a doc, you are welcome to stay at my house so you won't need to spend money on a hotel.
I live in the Washington DC area. PM me if you are interested.
Best of luck to you.
There are many things that can cause this problem, some of them are: (please forive if bad spelling) diabetes, kidney problems, liver problems, lung problems, Muscular diseases etc.
There are several things that you might want to be tested for. Don't just let it pass, get the testing done as soon as you can.
Crispy, what a nice thing to offer! Michele, I am so sorry you got a phone call like that - way beyond frustrating, I am sure. Did you say your Rheumy didnt think anything was wrong either? If that is the case, you need to find another one who is willing to take into consideration your physical symptoms as well as bloodwork. If pred works, that is one sign that you have some sort of AI diseases going on. Hang in there and dont accept what is being said. You need to fight for the care you need.
Hugs sweetie!
I am sorry, Michele.
I say stop all the meds, if they are not helping you to being with. Then when you have to go to the hospital, maybe they can find out what is wrong with you. Just an idea. I would probably do that if, my GP and other doctors kept saying they did not know what was wrong with me.
Michelle please don't give up, theres got to be someone out there that can help you. I know you are so depressed and discouraged right now and rightly so. I am so sorry. You know other people have said it took a long time and many Drs to get an accurate dx. It's just so frustrating.If this makes you feel any better I had a friend who kept going to the dr and er with extreme pain in the stomach area. After several trips to 3 er's and 4 dr's and 3 ultra sounds she had to have emergency surgery for gall bladder stones. Wouldn't you think something as common as that would have been easier to dxSince this all started with the hormones in trying to become pregnant and then miscarriages perhaps this is a hormone nightmare. Could you go see an endrocronologist? They mostly treat people with diabetes and thyroid problems, but perhaps they can figure out what is gone completely haywire for you.
I doubt very much that you have a psychosomatic illness. I don't think it is in your mind.
Perhaps the pred and the humira is masking what is happening inside you. Pred is really good at that. I think it might be smart to ween off of the pred under the care of an endroconologist.
I am totally disappointed that the U didn't steer you to a shrink if they thought you were physically well.
That dr is an idiot! There are lots of things that can cause the symptoms you are having that may not show up in bloodwork for a long time: lupus, vasculitis, ms, etc. I vaguely remember a type of vasculitis that fit your symptoms and causes miscarriage but I can't remember what it is called.
Don't you dare give up! Go to your GP and ask for a referral to a new rheumatologist or other specialist. Your GP should know enough of your medical history to know something is definitely wrong and send you to another dr. Sorry the U of M doc was such a jerk. My daughter and I have gotten very good care there.
Laker
Dear Michelle,
This is so frustrating! My present RD refused to believe that I had RA as I slowly shuffled in with my walker during a whole body flare
My husband, Bill, a quiet, stoic man, was ready to erupt!
Too late to make a long story short
Do you know what they call a doctor who graduated last in his class?
Doctor!
Janice....LOL. Cute.
((((hugs))))) I loves yas girlie. Ok...it really is time to go for that rheumy that the person who lives in your area recommended you should go see. This is infreakinsane.
I am seronegative..ok..well...you don't see my doc going oh you don't have enuf of an rheumatoid factor so you dont have ra. Overweight?? Kiss my overweight shiney hiney. While being overweight can excerbate flares etc. it does not cause the problems that you are having and what a jerk for indicating it could and would.
Michelle,
I'm so sorry you are going thru this. Please continue on your quest to find out what the problem is. I just want to say that hypothyroidism can cause joint pain, inflammation, etc. Even if it isn't RA, you KNOW there is something wrong. Follow your gut and find someone who will listen to you.
Best of luck!
Phats
I used to go to a military treatment facility to see my gp. He was amazing! He did OM on me every two weeks and more if I needed it, all on his own time. He got sent to Iraq and I actually cried at my last visit with him. His replacement was equally good, and picked up where he left off, well she got unexpected orders away and left after a mo. After that, I saw like 11 different doctors in two mo. time. They could never seem to find my medical records, so no one was willing to treat me. I had one who looked as young as my son tell me that I just needed to lose weight. (I was 143lbs) bad, but not too bad.... that was my last time stepping foot in that hospital. I found a private dr. and have seen him for the last two years. He is the one who recommended that I see "his" rheumatologist and I have been with him too for the last two yrs.I think I have mentioned before. I HATE the U.
Hugs, and more hugs,
Pip
And darn! That was my running joke!
micheleb, please call the rd i gave you . he is so understanding and kind.I have had sero-neg ra for 16 yrs. He is the one who diagnosed me and my daughter.What have you got to lose? I would not go off any of your meds until you talk to your GP.YOU know your body better then anyone,If there is something wrong keep looking for the answer.Hang in there.I will keep this simple.Kathy,
Thanks for your hubby's favorite line! How true!
I just love the humor! I think I live for it!
Take care and fight for some good help.
I am so sorry you are going through this. When I was a child, I went through the same thing. I had all the symptoms but my blood work showed nothing. All of this with a very strong history of family arthritis (my materinal gf had severe RA & my mom has lupus). All the time they told my parents there was nothing they could do for me.
Well, when I was a freshman in college, I flared so terrible right at the end of the year. It was so bad that the college dr. kept me in the infirmary and sent me home before finals. I had already seen my Mom's rehuetalogist once or twice. So, I came back and saw him. That wonderful man told me that even though my blood work does not show that I have RA, I defineately have it. I have been seeing him for the last 20 years and getting treatment.
I did go to another doctor a couple of years ago because my doctor is not in network and it looked like the insurance was not going to pay for the medicine he prescribed for me. The other doctor told me what you ran into. Your blood work doesn't show RA, therefore it must be something else. Wrong answer! I never saw her again. Keep trying. You know there is something wrong and that is what counts. Just because a body doesn't show the typical diagnoise items, doesn't mean you don't have the disease. Every body reacts differently to RA and the doctors need to remember that.
Hi Michelle,I am so sorry that you are going through this! I had much the same due to being sero-negative and all of my labs were normal. I did finally stop the meds and had ankles twice their normal size so I sure don't recommend it but I had to know.
You keep going! It took me 3 rheumys to get proper care and we don't swell, have pain etc. for nothing!
((((Hugs))))
Thank you everyone for being so kind. Crispy, your offer made me cry!Stay with us Michele. We don't just bond here because of RA. You are part of the tribe now.
You just have to keep trying. They will have to get out something other than the Betty Crocker Cookbook of Medicine to figure you out. Since you have a good relationship with your GP and especially since she knew you when you were well, ask her to do her very best thinking and reach out to the medical community for you. Somebody will come up with an effective treatment for you - even if they never really get a name put to this nightmare.
I really do think something is whacked out in your grandular system. Glandular stuff is one of the few things that cause such extreme and rapid widespread messes. Just think what a 'normal' case of pms can do to a person. Swelling, wide spread pain, emotions off the charts, acne, nauesa, constipation, ... if that crap went on longer than 3 days.. Hormones run the show. When they are out of whack we have huge trouble.
I'm sorry to read of your troubles Michelle. I hope that you will soon find a doctor that can help you. Hang in there.Thanks girls. I did go to a reproductive endocrinologist, two of them in fact, while going through the fertility stuff. They know my progesterone is low and just recently my dhe was tested and was also very low. I believe there is a link to my unexplained miscarriages and my problems now, just no one has been able to figure it out! I have never been to a regular endocrinologist so maybe that will be the next step.The trouble with all specialists is that they seem to have blinders on. They just never look at the whole picture.
I am sure your reproductive endocrinologist was focused on helping you have a baby. Maybe a general endocrinologist could 'see' you better.
Michelle..Michelle,
You mentioned your hormones being low. I also did fertility treatments and have PCOS. My progesterone was also low and I often developed lutenal deficiency during fertility cycles. I was finally successful when I used progesterone shots (I had twins from a frozen IVF cycle). I took the progesterone shots the whole first trimester to be on the safe side.
Well, I noticed that my testerone and other levels are extremely low, which is very odd for someone with PCOS (another disease that I have but doesn't show up on some of the normal tests). I asked my Rheumatologist about this and if hormonal supplement might help. He told me absolutely not. The reason my testerone and some of my other hormones were low is that people with inflation turn testerone and its precursers into bad cortisone instead of regular hormones. I know that you mentioned your extreme swelling lately and that might be why some of your hormones are low. Just food for thought.
I have seronegative RA and have been fortunate to see doctors who looked at the clinical picture rather than the labs. My labs are always perfect. However when a previous RD took me off the meds that were keeping me going, I flared big time. And it took a while to quiet down the disease again. I LOVED prednisone because it totally removed all the pain and swelling. I was given that early on, but no longer as I have osteopenia (low bone density).
I hope you'll find and keep a rheumatologist who treats YOU, not worries about the "numbers" that may or may not indicate disease activity. I didn't realize how fortunate I've been...hope you find relief and reassurance soon!
Michelle...I just found this and thought of your wonderful appt that cured ya!
Michelle,
I knew I had read about something that seemed to fit your symptoms. Kathy's post made reminded me. It was lupus. ( I can never remember stuff anymore-it drives me crazy). In spite of my dx of RA and vasculitis, my gp still suspects lupus and I am tested for it by every doc I go to even though the tests are always normal. I think a person can have lupus without it showing up in bloodwork for quite some time. The Lupus Site is a really good lupus website if you want to check it out.
Laker
Since being on this board I have found many more reasons to dislike and to mistrust Doctors. For the most part I have to sort things out myself. Too bad I dont have a medical degree because half the time I think I need one.
Sorry Michelle for all the crap you have been through. It's just not right.
Thanks everyone so much! I am sure that my out of whack hormones are definitely making things worse for me. My leutial phase was always the standard 14 days but my progesterone was always low and I did do progesterone when I was doing the fertility stuff. I am on a monophonic bc pill now that is supposed to help regulate my hormones but I doubt it is making my levels normal. I am almost thinking I may be going into an early menopause from some of my symptoms but haven't investigated that too much yet.