I saw my Rheumy this week for my 12 week follow up and it was very uncomfortable. He is an extremely intelligent man but I think he LITERALLY could not hear me. He asked me the same questions multiple times and we didn't get anywhere. I was asking him about these bone pains I have that are not in my joints and also these pains in my legs that feel like Charlie horses. He ran a CBC and kidney function and it was all normal but there still no explanation for my pains and this stuff HURTS it brings me to tears instantly. He hasn't put a final diagnosis on me I think because my RBC is never low. I have every thing else that points to lupus, positive/high Ana panel, arthritis, rash, raynauds, low C4 complement test... You name it. He has been in practice for 40 years and he has a hearing aid and I still think he did not hear me AT ALL. Is it time for a new dr?
Yes! I'm personally at a point where I don't even know why I bother going to a doctor/specialist. It seems they don't take Lupus seriously and disregard us who have it as raving women. I've been suffering with symptoms for most of my life and finally late last year my first ANA blood test came back positive. I was dismissed yet again and told to come back in 6 months.
WHAT is wrong with the medical field? Do they only believe men when they have pain. I'm one who HATES to go to the doctor and will avoid it at all cost so if I go... it means I'm damn sick.
I'm dealing with it alone at the moment until my 6 month appointment is here in August. No idea why they really don't seem to care.
Oh yeah you might need a new dr too. I think my dr was just def and couldn't hear my concern!!! I have to go in every 2-3 months I get so tired of going plus the medical bills can really pile in. Good luck with your struggle. If you don't mind me asking what led to discovering your condition? And I dodge the office at all cost but these muscle cramps are pretty extreme. I wonder if its fibro? I need to look into it
Is he in private practice or part of an HMO? If part of an HMO, you can speak to the head of the department and/or to member services to express your concerns. A doctor who cannot hear his patients should be a major concern to any practice and should be something that they are made aware of.
I always say that, if you are not comfortable with your doctor, then-by all means- find one that you are comfortable with. You cannot participate in the management of your disease and/or the treatment of your symptoms if you are dealing with a doctor whom you are not comfortable with. And, not being heard (literally) is an issue that would certainly make me uncomfortable (lol).
Best of luck and let us know how it goes.
Peace and Blessings
Look For The Good and Praise It!
On one hand getting a diagnosis isn't all its cracked up to be. Be thankful that you are dealing with "just"'joint pain and the like for now. Don't get me wrong. I know that is hellish. Been there, done that and not trying to diminish it. I just know that after years of a vague diagnosis I ended up being glad for that because it meant that my kidneys were holding up. BUT I had the advantage of having a doctor who was and is treating my illness as a real disease and who, out of earshot of insurers, calls it Lupus. So basically I do think you should be seeing a better doc, yes. If at all possible. Someone who is aware of modern understanding of fibro and autoimmune disease and how hard they are to pin down as well as how important it is to treat them with or without the L word diagnosis.
If you can accomplish that by getting someone to talk to him about the hearing issue and stay with him, that's great. But if not...
Good luck. I know it's a pain to look for a new doc and I lucked into mine by working in the medical community. But sometimes you have to go through two or three to find the one that works for you. I saw two others before dr. S and they really awful. Cruel, actually.
Hope the typos aren't too bad. This site isn't set up well for iPhone.
Hey sorry for the late response I did find a new doctor I didn't feel comfortable with him at all. I went on a limb and lowered my dose by half and it helped take some of the muscle weakness away. I spoke to a pharmacist who told me to stop its a severe side effect lol later I added twitching/nerve jumps to the list. But he recommended another dr and she ran 26 test to make sure it isn't another AI which makes me more comfy. Make sure were looking at the right thing. I am not pressed about a diagnosis I am just glad they started treating me. Since they started my treatment in November I haven't had a single migraine which is a blessing for me I was having them on a daily. Come to find out a lot of his previous patients left his practice he was out sick alot and it was just time
I am glad to hear that you found another doctor and that they are treating your symptoms. That is, of course, very important. Much more important, sometimes, than an actual diagnosis.
I am not sure if I understood your post; are you or are you not comfortable with this new doctor? I do hope that you are.
Best of Luck
Peace and Blessings
Look For The Good and Praise It!
I was reading your post and have the same story about the docs. I am now looking to see an Immunologist to try to get a diagnosis. I am in a REALLY BAD flare right now and just keep hoping to find a doctor that will help me get some relief. Now, my organs are being affected. I have been dealing with Lupus symptoms for a year consistently, but looking back I think I have had it many years. It's just within the last year it's grabbed ahold of me and will not let go. How are you doing with other painful symptoms?
Good Luck to you,
PLEASE if there is ONE thing to HEAR me say for those of you who NEED HELP and ARENT GETTING it AND for anyone else going through this or any HORRIBLE LIFE CHANGING ILLNESS/ILLNESSES it is THIS~~~~~~~~BLOOD TESTS (especially if the ONLY thing LOOKED at and NOT EVERY OTHER SYMPTOM is factored in) are NOT the only way to diagnose Lupus and/or other illnesses as well (MY GREAT DRS. have made this CLEAR to me as well as my own EXPERIENCES). SO MANY FACTORS SHOULD BE TAKEN INTO ACCOUNT...... I have the PERFECT example I dealt with in 1998 when I FIRST felt SERIOUS HEALTH issues BEFORE being lucky enough to go into remission only 1 month later until late 2006. My GP at the time ( I DITCHED her later when she kept telling me it was "in my head" and I just needed to "go home and rest more...." WHILE I got sicker and sicker) told me (along with some other s****y Drs. at the time) If I had an autoimmune disease then my ANA would be elevated.... Well, she ATE CROW after I pushed her to check for ANY type of arthritis ( I had such pain in my fingers and wrists I LITERALLY could NOT hold my mascara tube without crying). My Rheumatoid Factor came back SKY HIGH BUT my ANA was NORMAL. NO elevation at all. She actually appologized BUT when I went into remission after 1 month she thought I was healthy for LIFE because when I got EVEN SICKER with the Lupus,Sjogrens, Raynauds.... in late 2006 she thought I was a hypo. I read a book about womens "gift of fear" and how we IGNORE it all the time BUT we shouldnt because WE DO have INTUITION/red flags, whatever you want to call it. LISTEN TO YOURSELF AND Your BODY. WOO HOO you changed Drs! GOOD FOR YOU!!!
We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette
Hey no I ment that my previous dr was the one u didn't like. I didn't like the fact that he only ran an Ana panel (which was high; 1:640 he ran a C4 compliment it was low and a cmp) and left it at that. I didn't like the fact that he questioned if it was other auto immune diseases but there were no additional test ran. This new dr ran 26 test for multiple AI disease or possible inflammations. She wanted to rule out any other possibilities, make sure I was on the right treatment plan. I am so thankful that she did. I had my follow up today and she confirmed it was SLE no need to fear about sclederma or sjorgens or anything else. Even though I have a diagnosis now (bummer on my insurance since I have an individual plan) but I feel relieved knowing I am on the right treatment and I am in pretty good condition