Left DR office in tears, sick of incompetent DRs
:cry: :cry: I need some support and words of encourgaement badly, please!
Quick background: have been dx'ed with mild cystitis and chronic urethritis, no one knows the cause, no bacteria. Developped joint pain, on and off flu feeling, bad headaches(never get headaches), short-lived sore throats, low-grade fevers, chest pain, shortness of breath, irregular periods(I was always on time), nausea, lost of appetite, TMJD like symptoms, IBS, and a couple mouth sores, and all this started around the same time and new symptoms have been coming on left and right within the past few months.
CBC count showed low WBCs, low lympocytes, low neutrophils. ANA negative among others(1st and only time so far tested.) Chest xray and EKG normal. Echocardiogram showed everything normal except it said "mitral valve leaflets appear mildly thickened." No one mentioned this to us, we read it ourselves. Is this concerning? Could this be causing the chest pain and shortness of breath? Is it bad that I have that? Anyone else ever had that?
So, on monday, I saw my urologist, and he said he didn't know why I had this urethritis and mild cystitis as I did not react to month-long antibiotic threapy and there is no infection. My mom mentioned about a rheumy, he said he agreed, so he gave me a business card for a rheumy.
Yesterday, my mom and I went to a library and read a medical urologic encyclopedia and the main cause of nonbacterial urethritis is thought to be an autoimmune problem.
Now, what made me upset, was today. Saw my internist(who thought I had lupus.) I told her I still had the exact same symptoms. She said, "well, everything came back normal"(referring to blood work.) "It can't be anything serious, it won't be an autoimmune problem because blood work is fine, so I want you to see a rheumatologist"(don't rheumys specialize in autoimmune conditions? kinda contradicting) Then she said I need to become more active and get into my regular activities again(haven't been to school in a couple months due to painful symptoms, but am doing homebound schooling.) She said I really should do long walks. Well, I ended up doing a lot of walking about a week ago to get out, my knees became really stiff and joint pain hurt, couldn't really bend my knees easily due to pain, so obviously "long walks" isn't the remedy for joint pain. She then tried to come up with reasons of why I am having my symptoms. It ranged from gout(don't even have those symptoms, no idea where she got that), to AIDS(there is no way I could have gotten that), to PH problems in my urine(very incorrect), to "do you do IV drugs(like heroine, etc.)" :shock:
She also said she doesn't know about the joint pain, as people my age don't get arthritis(I am 17.) Well, with our deep research, children do indeed get arthritis, there is juvenile arthritis, so she stated another incorrect statement. She also said the lower back and lower abdominal pain could be due to something genetic, I think polymotis(that's what it sounded like she said.) I told her that my urologist said that the lower back and lower abdominal pain is due to the urethritis, it is very common in urethritis. She said "oh." She said I should go back to my normal life, and maybe my pain will just go away, I will forget about it. Well, obviously, she is implying perhaps my pain is in my head, something I am very sick of hearing. I mean, there is proof of problems, go look at that awful inflammation in those pics in my urethra!!
I don't understand doctor's reasonings somtimes. :x
All in all, she pretty much meant that my pain is nothing to worry about, I need to get back to normal life and the pain will go away. She gave up on me. About five years ago, I had the same urinary problems(inflammation) and every doctor gave up on me. It's so discouraging. I left that office today crying. I feel like no one understands how debilitating my pain is. And it's even harder to not have ANY answers as to what is causing this all of this pain. I don't even have any thing to help with my symptoms, except for Vicodin(limiting myself to that med) and Urised(helps with urinary symptoms.) I am so frustrated and I am so worried that every doctor is going to give up on me, including rheumatologists. I am worried that no one is going to give me an answer, and I am going to have to live with all of this pain with no medication because no one is finding a source of all of this, except "it's in your mind."
I am sick of getting the runaround with these doctors and all of them implying that I am making it all up. I know something is wrong, everything I am expericeing is not normal.
Well, I am my very first rheumy appointment monday morning, and I hope this doctor will be the best doctor I have ever had and that he will give me answers and a diagnosis. Any advice of what to do at or prepare with for the rheumy appt? Things I shouldn't do to prevent him from thinking I am crazy?
My mom said that if it comes to it, and if most of the rheumys around here won't do anything, then as a last resort, we are considering going to the Mayo Clinic, to see what they can do. Has anyone had any experience with going to the mayo clinic?
I am so depressed with all of this going on. Please tell me what I can expect. Will I get a diagnosis someday? Will doctors begin to take me seriously? Will any doctor base it off of my symptoms rather than bloodwork?(as I have read in many places that blood work isn't very reliable.)
Please tell me it's going to be okay. :cry:
Hugs...squeeze. Sometimes a good sob does the body and spirit good. Are you okay now? A bit?
It's going to be okay, Gisele..it may take some time to get the answers you need. I wish I could give them to you. I do know it is hard to find a good doctor. Sometimes they seem to lack people skills, feeling like they have no compassion. Blank stares, ooops sorry times up as they escort you out the door, next patient please.
Saysusie knows oodles about the blood work. She'll pop in or you can direct a question to her with a new topic addressing her.
Despite it taking forever to get a diagnose they are treating your symptoms, eh?
Don't exercise to the point of pain. Walking I suspect they advised was to build muscle strength to support your joints. I got the same advice oh about 7 years ago. Said I had arthritis, I was old enough...smile. Turns out it wasn't arthritis afterall. Just Lupus.
I am finding all these disease are quite similar. All symptoms can be cumlative before reaching a diagnose. One here, one there..till one day a proper diagnose. I gather they won't give you a diagnose because frankly they don't know which or what one.
When you schedule your appointments ask for a double time, so you can get all your information out there with enough time. Ask how long the initial appointment is. It should be long. Bring your records. Outline it, so you don't miss any points. Dates, symptoms, prescriptions, results. Be specific, direct. All symptoms even small are important so don't leave any out. Have a list of questions prepared. Go down the list and if time is up say you have more that needs to be answered. They will charge your insurance at a higher rate and if you do copay it will remain the same. I think they charge it as a "high visit/examination". It feels like you are on trial, eh... when you have to explain feeling like you have to justify your illness. What you feel is real and you are not the H word..hypochondriac.
Most important, breathe, take a deep breath, exhale slowly through your nose..slow your thoughts down...manage the stress you are having. Stress creates havoc with or without a disease.
Did you get my post out there about mouth ulcers, cool rinse, avoid hot?
Do something you enjoy tonight, tomorrow...and worry not. Monday will come soon enough.
I will pop in later to see if you been by...if you want to talk more about your feelings.
Smile...it will all come,
Thanks for the kind and thoughtful words, Oluwa!
And oh my gosh.....the blank stares. I got that today. About seven times within my short little waste of time appointment, she would just stare at me, and the whole room would be quiet, and it was quite awkward. Just that blank stare, I hate that.
Regarding the treatment of my symptoms, I took Aleve a few times, which didn't do anything. Told her that today, she offered to write a prescrip. of motrin, then she like backed out, so I don't have that presrip. But I guess I will try OTC motrin to see if that is better than the Aleve. I take the vicodin as needed, but I like to avoid that really because it's not really a good med to take regularly. And then I just take Urised. But that's it, I still have many other symptoms that bother me, and no meds to help them.
She just had the slightest idea today about what to tell me. I bet she was relieved she could dump me off on another doctor. The receptionist asked about a follow-up appt., and the DR said, it's just going to be as needed.
What I would love is once I do get a diagnosis and if it is an autoimmune problem, I would love to go back in there and tell her the diagnosis, especially since she said it wasn't autoimmune, despite the facts. And plus, if it's not autoimmune, what else could it be? My symptoms are all to hallmark to an autoimmune problem, and it's just too odd how they all began in the same time frame. I just don't understand why she based it all off of the blood work, from what I read, doctors really shouldn't base it all off of blood work, because it changes so much.
Btw, I did take your past advice on the books. We went to the library and got a ton of books on autoimmune problems and lupus. And we are going to go to the bookstore to see if they have the Lupus book. It really does help to be researched on your health.
But, to take precautions, I guess all I can do is play dumb on monday. I should just be clueless and read off my symptoms to him. I am definitely not going to talk about autoimmune/lupus, etc. That's when he would probably call me a hypochondriac(hate that.) So, I will just go with the flow, and hopefully he will be a great doctor.
And yes, I did get your advice on the mouth ulcers. I don't currently have one, but if another pops up, I am going to do that.
I just really want someone to give me a diagnosis. It's so frustraing going from doctor to doctor because no one knows what to do. Isn't that why they went to medical school? To help people feel better and to diagnose conditions, not call people hypochondriacs and pass them off on another doctor? The good, caring doctors are few out there. I hope my luck looks up with all that.
With the blood work, I have read how some lupus patients had negative blood work a few times, then positive other times. I also read that how some didn't have a positive ANA until they ended up in the hospital. I read how some never have a positive ANA or others, which is ANA negative lupus. Also read how some feel terrible, have negative results, but then feel great, and have positive results. With these facts, it makes me wonder why many doctors base everything off of the blood work. Shouldn't they go by symptoms, and blood work if it is postive? Maybe some doctors don't even know about any of that.
Well, I do feel better than this morning after I left there. It just so discouraging and hard when doctors give up on you, it's so upsetting. I am sick of trying with all of this. I wish it was as simple as going to the doctor, them giving you a diagnosis right away, and getting meds. I really hope this rheumy monday will give me some answers.
You're welcome. I know you would help me and others the same...
I think some of the care we receive indirectly is the patients fault. Not your reaction to the doctor but all previous ones who came before you, before me. It use to be doctors words were like infalliable and they before us would listen and were complacent. I even did it on a few occasions and may a few more. To me they are only are smart as the patience they diagnose. Because without our illness they would have nothing to learn by, so I wish some would take heed and put their arrogance in their back pocket.
Girl, don't go with the flow. Listen, yes, be armed with knowledge and if something doesn't sound right ask. If unclear ask again. Remember you are paying him for his service and not the other way around. Doesn't mean we should be rude, but speak with confidence, speak on your behalf as if you would for another. As Saysusie says, be your own advocate. Lay out all you symptoms, the test..and ask him what he thinks, and why...and what it means.
If, you do ever go back and she gives you the dead stare, ask her..Am I boring you?
I have read all the things you have mentioned too and have read post with it also, so you are not alone. Confusing, eh?
Have you research your Rheumatologist's background. Does she specialist in SLE? Do a google...
I know it is important for your mind to have a diagnose, but you can start at home. Key words...handle the stress, don't make stress. Are you eating well? Avoiding junk. Getting proper sleep?
Aleve...is the same as Naxproxen prescribed except the OTC has 220mg whereas the prescription has 500mg. I was prescribed that for inflammation, two times a day.
On your joints, maybe the Rheumatologist will prescribe Plaquenil. I know it done my body wonders and with the rashes too...especially my face diaper rash (malar).
In The Lupus Book if I recall correctly it says use heat on the painful joints. I noted someone in here said it would aggravate the inflammation. My PCP told me the other day also to use heat...moist heat. Not a heating pad.
Try stretching everyday to keep the blood oxygenated. I know it does my body good. And do it often, sitting in chair, laying in bed...standing in front of the refrigerator while deciding what to snack on.
Don't feel bad, they gave up on you. They didn't. They gave up on themselves. And really would you want that kind of care..nadda...nope. So, keeping looking for the one.
I just did a quick wiki.. http://en.wikipedia.org/wiki/Urethritis Do you fit into any of those causes listed and their symptoms?
I take it you still have urethritis? Did they try another antibiotic or all you need is the Urised for inflammation?
Yep, Vicodin is a bit strong...maybe if you need a pain killer ask to prescibe Ultracet aka Tramadol instead. But if you are in pain, it is good to take medicine when the pain isn't manageable. Pain causes stress, stress causes more inflammation and it affects your mental well being and spirit. If the pill feels too strong, and if the pill has a score in it, break it in half.
So whacha going to do for fun tomorrow? If you read about your health daily, allocate a hour only and then go to a movie, have fun with your girlfriends. Buy a little something for yourself. Into lipstick, they have great falls colors out there...new fall boots.
Again worry not..Monday is only fives days away. Set today aside, make out your questions, your file to take with you and leave it till Monday...okay?
Sweet Dreams, :sleeping:
Thanks for the advice about the rheumy. I am going to do that. I was just so hesitant because I don't want the rheumy to think I am doing research because my past urologist(who I don't see anymore) got mad that I was doing research and becoming educated on my health, he said it was foolish, so I am worried all doctors have that mindset. It's a pity that some doctor's attitudes hurt you in the long-run.
:lol: That is hilarious at the "am I boring you." We are probably not going to go back to her, but if I do get that again from other doctors, I will be sure to use that line, lol!!!
I googled the rheumy and it just says his locations and stuff like that, it doesn't say what he specializes in. But he does have 4 or 5 offices, so maybe he is a rather popular and good doctor.
I try so hard to avoid stress nowadays, because I think that stress is what brought all of this on. Starting in June, I had a tremendous amout of stress. First, of course, I had pressure to do well on finals at school. Then, my cat had got an ear infection and had to get surgery for an ear hematoma, and I didn't get sleep that night b/c I was watching her to make sure she was okay, I care so much about her. Then my family and I moved about 600 miles, and so packing, etc., was stressful, then I did something not very smart, when we moved, we drove straight through, I didn't sleep for 36 hours straight. :shock: Then when we arrived in our new house, 2 days later we went on vacation all throughout the northeast states, so again stress and minimal sleep. I am thinking stress and lack of sleep has some kind of connection here.
I am eating well, though. As for the sleep, it seems that is all I am doing nowadays. For me lately, 12 hours of sleep isn't even refreshing. But with all of these DR appts and tutors coming over, I get about 7 hours of sleep, then after the appts, I go back to sleep for hours at a time. My life seems to be sleep right now. I am just so tired a lot.
And with the mg in the Aleve, that's interesting. I bet if she gave me a presciption for Aleve, it would have helped a bit. What's funny is she asked me "how many mg are in the OTC aleve?" And I am thinking how am I supposed to know? Don't you know these things?
I will try the heat and stretching, too. I don't like getting joint pain at all, so I am open to anything.
I still do have urethritis, it's one of my main problems and it's very painful. I looked at that link and all of those causes have been ruled out by my urologist. Urethritis is normally an STD, but I am not sexually active, so that isn't possible. And the other main cause is bacteria, but through biopsies and cultures, there is no bacteria or infection at all. It's just inflammation and no one knows why. And I was on one of the best antibiotics(says my urologist) for a month, and he said that if antibiotics would have done anything, they already would have. So he said it's a waste of time and pointless to try another antiobiotic also because there is nothing present for the antibiotic to kill. And Urised is a medicine that helps with the burning pain and urgency, it does nothing for the inflammation at all, it just helps relieves the urinary pain for a couple hours. I've been trying many others like Urised that my doctor gave me, and Urised is the only one that lasts the longest with relieveing a couple symptoms, so that's, sadly, the best I've got.
Tomorrow, I have to get up early for a teacher coming over to tutor, then I will probably do some more homework and sleep, lol. But the plan is saturday if I am up to it, to go shopping because it does cheer anyone up. :lol:
Thanks again for all the helpful information and kind words! It really did make me feel better knowing that someone understands.
First Rheumy Appt.
This morning was my first visit with a rheumatologist. He was very very nice and very understanding. I told him all of my symptoms and I also told him how I have doctors not believeing me and telling me it's in my head and I'm sick of hearing it. He said "I won't tell you that." Like my internal medicine doctor, the first thing he asked was "does lupus run in your family", and this was after he saw the negative blood tests. He asked a few questions, and then he did this thing where he pressed on my joints to see if it hurt, and most of them didn't, which he said it is probably not fibromygalia. One that hurt badly was when he pressed down by my heart area, which is where I'm getting the chest pain. I should've asked him, but does anyone here know what that indicates for such bad pain when he pressed there, could that be heart related or joint related? Aside from mentioning lupus, he said sjorgrens might be a possiblity and we might take a mouth biopsy. :shock: Ouch, I hope not, has anyone had one of those? But from what I have been reading, sjorgrens doesn't seem like a possibility, I do get dry mouth/throat once in a while, and sometimes dry eyes(which I've been attributing to allergies), but we'll see what the tests show. He said the way we will figure out what it is is by eliminating different conditions before we get down to one that matches all, and he said he'll need to think about this and put it all together(I took the advice here and typed up a timeline thing when all my symptoms came on by month and typed up a list of symptoms I've been having.) I have another appointment with him on Monday morning. And tomorrow or the next day, I have to get another blood test to test for a whole bunch of stuff that I haven't read about before. He checked off a lot of different things to test for under the lupus category. What I didn't understand is why he didn't check of the ANA to get tested for that again as I've been tested for that only once in my life, and I've read how the ANA can be negative one time, but positive another. It goes through flares just like the symptoms, but it can show up, then go back into "hiding", but it leaves behind the symptoms, that's what I read. :?
Well anyways, it's great to have a doctor who actually seems to care and will not give up on you. I hope he stays that way.
Thanks everyone for all the advice that has been given to me here! I think that the advice is what helped made it successful today!
Doctors just know what they have read and studied from books, and studied in medical school. They memorize everything and they miss some things. They are human. They don't know everything. I suppose they are doing the best they can with the training they have..
I have cried many times over doctor's lack of interest or care of me. But I now have a very caring and thorough Rheumatologist. She's so nice she has even called me at home! And she is very busy. I kept changing doctors until I found a good one. It took some time.
I also took off on my own and studied natural healing. I added that to my regular medical treatments and Prednisone. I was able to reduce the steroids right down to 5 mg from 40 mg, over time. Now I just take tylenol, and once in a while some prednisone. I was able to do this by healing lupus naturally. I rarely take steroids anymore, just some tylenol at night if I need it.
I need to eat really well. If I eat lots of sugary foods, I am ill. I really have to be careful with what I eat.