Originally Posted by maryalice40
Wow! That is terrible. Will you PCP call you when they do finally receive the fax? I think if I were you I would keep calling everyday and several times a day until you get answers. Maybe you should print out all you typed here and give them that to read as history. Do you live somewhere with health coverage? Or is it pay as you go/insurance...either way, if you can keep asking for answers and if that means going to several doctors/walk-ins, etc if your PCP won't see you...then so be it. Blech! I wish getting help was easier for you.
I can understand if the infection cleared up and my results come back normal but I have had some burning the past 2 days, and now hesitancy. Makes no sense. I wasn't burning monday when she checked me, those results will probably be okay too. It's felt more like hydronephrosis and I've had that before and I know exactly what it feels like and it does hurt. You can feel the swelling. What am I supposed to say when they tell me my first urinalysis results are normal. Oopps my bad, sorry I'm crazy! I don't think so. You guys ever here of toradol (ketoralac)? My new back pain medication. I'm getting injections twice a week. So it's very very likely toradol induced the pain since it's well known to cause renal failure. I haven't had any injections since, but it still hurts. And for that doctor to treat me like that today, just really made me mad. I'll see my PCP in 12 days, yes he could get me in sooner, but I already have a follow up scheduled.
Now I can't pee at all. What causes that?
Hi Maryalice, welcome to WHL
I can definitely see you are frustrated and I can completely understand, I have had a LOT of trouble with doctors in the past.
Im just wondering what kind of mood or attitude you attend the doctors in? Just be careful about being too difficult or too demanding of a certain diagnosis... a lot of doctors only see a hypochondriac sitting in front of them until proven otherwise and unless you completely play dumb, they think you are after the diagnosis you want and wont accept anything else.
I was turned away from emergency without an xray for a separated shoulder because I didn't react to pain and was in a very good mood... but thats because the front desk nurse had given me a bunch of codeine and I rarely take it because it makes me nauseous... but it sent me off high as a kite! lol
The doc just thought I was a druggy in to get more meds because I couldn't remember simple things (because I have lupus!). She examined me and said there is nothing wrong, you can lift your arm there is no dislocation/separation. Next day went back to my GP who had told me to go to ER (as it was late in the arvo and the xray place was closed) and he sent me off for xray... oh looky, separated shoulder. My GP was furious with the hospital.
Anyway... the moral of the story here is, you sit down with your doctor looking wide eyed and innocent, you behave politely and say you have all these symptoms, you have NOOOO idea what they could be and they scare the living day lights out of you...'please help oh wise superior doctor... you have the power.' lol
The second you start to steer the doctors attention, is the second they start to believe you WANT it to be that. Ridiculous logic, but I am sure others will attest to this strange doctor reality. You make a suggestion and with 99.9% of doctors, they will automatically rule out what ever you suggested possibly merely on the basis of ego... perhaps because they are wary of hypochondriacs.
1. Take a deep breath first We know you are stressed and we can help you get everything sorted so you can get through your diagnosis as painlessly as possible. But, unfortunately, we have all been through the loooong trials of diagnosis so do prepare for more of this stress. You will definitely need to develop a relaxation technique, even if it involves coming on here to us and venting your heart out and then going for a relaxing bath
2. Then after you are calm, get yourself a list together of your symptoms. Think long and hard about it, even if you have to write it over several days to make sure you get everything. This will ensure you miss nothing out at all when you visit your new rheumy. They will however ask you to describe your symptoms regardless of your list, so be prepared and dont get too stressed by it.
3. Don't think too hard into what you may or may not have, give yourself a clear slate for the new rheumy and when you do go in, ask LOADS of questions about why this does this etc etc. Make sure they know you are concerned about your symptoms and your ability to work and live. I learnt recently to make sure they know just how worried you are and how this is affecting your life.
4. When you go to your new rheumy, you may want to consider doing what I do and making sure your system is clean of any unnecessary medications such as vitamin supplements and pain killers. Unless they are vital to your health such as prescription drugs. They are SUPPOSED to ask if you are taking any meds when they take your blood, but they rarely do. I make sure I dont take anything for at least a week before the blood test.
Having said all that... inflammation markers are no definitive indication of lupus and neither is a positive ANA. You don't have to have both and any rheumy that would say so, is not a good rheumy!!
Perfectly healthy people can sometimes have positive ANA with no symptoms at all and other times fully diagnosed lupus patients can test negative ANA! But with symptoms, a good rheumy would definitely take a positive ANA to mean a good indicator for autoimmune disease.
In your position I would try to keep a really clear head and stay open to all the possible causes of my symptoms. Keep lupus in mind as a possibility but dont self diagnose yourself, doctors can see it a mile off. There are a bunch of other AI diseases out there, have you googled AI diseases yet? Maybe it will help you to write us a complete list here of symptoms? We may be able to help you out a bit.
As for not being able to urinate... what do you mean? Do you mean you have a full bladder and can feel it but cant urinate? If this is the case you need to go to the emergency department right away. It could be that you have serious inflammation that wont allow urine to pass through, but that sounds rather serious to me... fingers crossed for you...
Whatever is wrong attacked my bladder sunday. Felt like something beat it to death. I already have chronic inflammation there. Yes it was full but I couldn't pea. Okay this morning though, came right out.
My additude with this doctor yesterday, well I told him I thought I had a kidney infection, showed him where my pain was, and he was like no, that's not your kidneys. Stupid retard. Like snot it isn't. Well anyways, he did say for your urine to be clear, it sure does sound like you have an infection going on. He did give me an antibiotic and told me to come back in 3 days if it didn't help but there's no way I'm going back. I was nice about it but I shouldn't have been.
My additude with my PCP. Dude, I have back pain!!! It's killing me!!! Please help me!!! I can't take it anymore!!! Or I feel like I'm eat up with nerve disease, could you please put me on nerve medication. I mean if you know where the problem is occuring, you mind as well tell them.
I really apprieciate your advice, but I am through with letting them do me any way they want. My days of being nice, or keeping my mouth shut, it's over.
That stupid ER. I'd be furious too. I could tell you so much crap they've put me through, your mouth would drop to the floor. But I'm not getting into that. lol.. Even my kids. My son had to have surgery cause a doctor ignored his symptoms. My daughter was told she had growing pains in her knees more or less, recently, she rolled over in bed, and something popped out of place, she can't walk without a knee brace, nor bend her knee without severe pain.
My symptoms okay.. You asked for it. LOL.
1. In general: Severe fatigue that never goes away (this is how it all started), weight gain, sweating, problems sleeping
2. Muscles/Joints: widespread muscle pain, muscle spasms, severe joint pain only with exercising, TMJ
3. Ear/Nose/Throat: I get blisters inside my mouth constantly, but I have had these nasty looking multiple ulcerations/blisters appear on the outside of my lower lip, recurring every 30-45 days, and it would put me in a flare, caused severe sleepiness, then I would wake up with my mouth broke out, plaquenil stopped it. It was not herpes, I was tested. Past ear infections, chronic congestion, post nasal drip, non-allergic rhinititis, turbinate swelling
4. ANA: Always had a positive ANA (now 1:640 homogenous & nucleolar)
5. Immunoglobin: RNP was 7.3. Lowered with antimalarials & improvement with symptoms. Raised back up without treatment.
6. Hematology: Have seen repeadedly low lympocytes in my blood work, my INR is low. Low B-12, Low Vitamin D levels.
7. Urinary tract: I've had kidney stones, and hydronephrosis even without stones, but my kidneys function normal. Bladder: urgency, frequency, incontinence, interstitial cystitis, reactive cystitis, blood in urine. Upper & lower UTI's.
8. Lungs: shortness of breath, been told I had pleursy but no tests to confirm, last lung x-ray showed scarring on one side
9. Heart: PVC's, chest pain/tightness with exersion, bigeminal rhythyms, abnormal EKG's from PVC's.
10. Neuropathic: widespread tingling, burning, cooling sensations, widespread shooting pains, numbness in back/neck, feet, legs, hip go numb daily with sitting, headaches/migraines, psychosis, symptoms of severe congential issues, bladder is shaped odd during filling, nerve issues are affecting it
11. Gastrointestinal: Chronic inflammation of esophagus & stomach, Gerd, Gastrititis, Ulcers, Gastroparesis, Hiatal hernia, Diverculitis, IBS, have had duodenum inflammation also, swallowing problems sometimes
12. Rashes: occassional hives, past issue with psoriasis, red blood spots on skin, red rash on chest that doesn't go away. Blister/burn in the sun. Have had tanning beds cause a malar looking rash, it eventually went away. The sun gives me headaches, nausea, and worsening of my fatigue.
13. Clinical depression (comes and goes), anxiety: GAD, possible ADD.
And I get that ANA's can occur in healthy people. I am not healthy. I may look okay, but I don't feel okay. My first rhematologist I guess thought that with low ANA's, but high ANA's he definetly did not disregard as nothing. I have had a diagnosis of Lupus in the past. Now questionable MCTD. I have had a diagnosis of chronic fatigue syndrome and was told my immune system was dysfunctioning and attacking itself. Is it possible that you can have an overactive immune system from CFS? I have seen it listed as an autoimmune disease on some websites, yet not on others. Some people say they don't know why they have it, but CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome. I think my first doctor was right. Maybe these other symptoms have manifested from being so tired, the pain didn't occur until years later. Can't they treat CFS with immunosuppression too? It doesn't matter to me what autoimmune issue it is, I just want to feel better. I need medication to do that.
Wow, I feel for you. I have many of the same symptoms that you have.
I had a great rheumy back in Texas. She called it MCTD - Mixed Connective Tissue Disease, with symptoms of Lupus, Sjogren's, RA and Psoriasis.
She started me on Plaquenil and MTX, and was starting to really work with me.
We moved to Ca, and now I have a rheumy like yours. She still renews my prescriptions, just to keep me happy, but she doesn't seem to accept my former doc's diagnosis.
It is frustrating, but I'm putting up with it until we move back to Tx in 2012.
I agree with the others - your neuro sounds good. See if he can recommend a decent rheumy.
A condition once diagnosed should not be taken away. Why does your rhematologist feel like the diagnosis was a mistake? What are they blaming that on, or did they say? If your ANA's are reporting negative now, it can do that with the medication your on. People get their diagnosis taken from them because of this, but it's just the doctors having lack of knowledge.
Maryalice, that is one heck of a list! I dont know enough really, but it sounds to me like you have more than just lupus going on there!
I personally have text book very clear lupus symptoms, so although they were ignored for many years by many idiot GPs to the point they nearly caused my death... once they were shocked into action a diagnosis was actually relatively easy for them. I know how terribly incompetent they can be... my shoulder incident was nothing compared to the time I was hemorrhaging... I had been haemorrhaging for two months straight due to a tumour... and was going in to hospital ER every second day for a blood transfusion... they kept blood for me there specifically for that purpose. I happened to be unlucky enough to come on a day that none of the usual nurses were on... and apparently the nurse that attended me first couldn't read notes. She kept me waiting and insisted she get my blood tested before (normally I come in, sit in a chair, they hook me up and take a quick bit of blood then stick the transfusion on and test the blood as the transfusion is happening). Well at the time I came in and had the test my HB had dropped to 60... nearly an hour later once the results came back the nurse rushed in apologising and wondering how I could still be conscious let alone smiling and making conversation... especially seeing as being active caused the bleeding to worsen.
Man, was that a time I'll never forget or what.
Or the time they forgot my transfusion after a difficult caesarean where I lost over 1.5L of blood. Next day I had mulitple pulmonary emboli. Stupid mistakes are not ok when its peoples lives we are talking about.
Im pretty miffed that they seem so dismissive of your condition. For a start, a B12 deficiency by itself is a serious enough issue... and is an obvious indicator that things are really really not alright. Unless you are a vegetarian? You seem pretty feisty, I can't imagine you would be
B12 deficiency indicates either inadequate diet or serious digestive issues. Are you having B12 injections? How are they managing your deficiency?
I really do hope you find a caring doctor soon who is willing to address all your issues. If I were you though and you have previously had a diagnosis of lupus, I would be sticking with it! If the plaquenil worked, go in, tell them you have lupus and need your prescription for plaquenil renewed! I find it only takes the edge off, I am still very much affected every single day of my life to the point I think plaquenil does nothing... until I go off it for a little while and realise it really does do something!
Marla... thats strange... cause my ANA comes back borderline positive on many occasions but it has never caused the docs to re-evaluate. But I am very classic case of mild lupus. Or, so I have been told its mild. Mind you tremors and serious cognitive dysfunction along with unsteady feet doesnt seem that mild to me!