I was recently in the ER and at my primary over 4 times in the last week. I had such severe neck/ shoulder pain ( I couldn't even hold my head up) and a persistant headache. It started 4/17/15 (I still have all this going on but much more milder with all the dam pain meds and crap they gave me). When I was seen at the ER 4/22/15 they chalk it up to pulled muscle gave me meds sent me home. I went to primary the next day because the meds did nothing and it was getting increasingly worse. I couldn't lay down which of course I couldn't sleep and it hurt to sit so I paced the house all night crying out in pain and hysterics until by the time Saturday night rolled around my boyfriend ( who finally couldn't take my pain and lack of his sleep) brought me back to the ER. They did a CAT scan and found that I had swollen glands and nodes, my veins seemed enlarged (I think that is how the put it) in the shoulder and also found a leaking carotid artery aneurysm. They then stuck my in ambulance and rushed me with the thought I would need surgery for the aneurysm to a different Hospital. The ER docs say that all the things that are swollen and inflamed (Lymphadenopathy is what they call it ) is from a sign of infection unknown (SURPRISE THERE) and I had elevated levels of inflammation. As I am there I am explaining to them I have been seeing a Rheumy for over 6 months but since my 4 blood test they have done are all negative then I must not have LUPUS per my Rheumy ( I am going to a new doc now OF COURSE) he has it in my notes that I must have had a virus of some sort LOL yea ok. but as the pain and headaches have not subsided and since the ER says go to my primary if anything changes I did as necessary and saw her on May 1st. Whelp let me just put it this way, I will now be seeing a new Primary, at first she saw and witness what I was going thru, but now it seems she is fed up with all my ailments that she is being rude. Making comments like "well believe me if it was lupus you wouldn't want it" No sh!t The suffering has been so horrible that of course I wouldn't want this darn illness, she also said " well even with your few good days you have you should take them for granted and do the things that make you happy" My primary has done one blood test my Rheumy 4 and they have completely ruled out lupus. If you read my page my symptoms are severe and there is quite and extensive list and that isn't even all of it. I AM SO MAD at these doctors and how they turn their noses up and write me off. I asked my doc, " have you ever been sick, have you ever lived thru months of pain that you cant even move without assistant?" Then you don't have a right to put yourself in my shoes. I left that office Friday in tears. Everyday I keep fighting and now I will have to keep up the battle and move on to different docs.
::hugs:: I am so sorry to hear how badly things have been going for you hon. It's maddening beyond expression when the people you trust to take care of you (doctors) aren't listening, aren't educated concerning Lupus, and write you off. I totally sympathize with you there! Hang in there. I wish I could help somehow, but I am here to listen if nothing else. You are not alone!
Thank you for the kind words. …in staying add positive as possible and trying to figure out ways to get thru to them. .I find factual findings told to them helps. .but seems to make them mad I know more or im educating myself. .Ugh
Talencia said:
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: I am so sorry to hear how badly things have been going for you hon. It’s maddening beyond expression when the people you trust to take care of you (doctors) aren’t listening, aren’t educated concerning Lupus, and write you off. I totally sympathize with you there! Hang in there. I wish I could help somehow, but I am here to listen if nothing else. You are not alone!
Jessica I am so sorry to hear that you have been having such a rough time. I find it irritating that drs only seem to rely on the blood tests for a lupus diagnosis, when it can clearly be lupus with the other symptoms they're supposed to use to help diagnose with. I hope you get some relief and answers soon. I also find doing my own research helped me get through a lot as well. And it usually takes a long time to fully diagnose lupus at least from what I have experienced and heard from others. It took me a whole year to finally be diagnosed. My blood work would keep coming back either borderline or just flat out negative. I feel for everyone that does not have such a great and understanding Rheumy like mine. Once again I truly hope you feel better soon.
Thank you for your supportive words Natasha. …it’s hearing about others experiences that help tremendously. .give me hope
Natasha said:
Jessica I am so sorry to hear that you have been having such a rough time. I find it irritating that drs only seem to rely on the blood tests for a lupus diagnosis, when it can clearly be lupus with the other symptoms they’re supposed to use to help diagnose with. I hope you get some relief and answers soon. I also find doing my own research helped me get through a lot as well. And it usually takes a long time to fully diagnose lupus at least from what I have experienced and heard from others. It took me a whole year to finally be diagnosed. My blood work would keep coming back either borderline or just flat out negative. I feel for everyone that does not have such a great and understanding Rheumy like mine. Once again I truly hope you feel better soon.
Jessica,
All of us can empathize with your trials.
Do you have a university hospital near you like John Hopkins, Sloan Kettering, Mayo Clinic? Don't know where you live or how your insurance works or if you're in an HMO (if so, there should be more than one rheumy and primary). Might be time to seek new docs.
I was officially diagnosed in two years, but suffered most of my life from autoimmune stuff. Non-experienced docs need hard evidence--not very clinical. When I went to the ER with pleural effusion amd 102 temp. Then it was an easy diagnosis. Hah. ER doctors were the ones that diagnosed my illnesses--not good. Finally, I was referred to a rheumatologist.
I hope you come up with a solution soon. Don't give up.
You got to hold on.
It seems like such a battle with these docs, I have demanded new Rheumy and now I will see a neurosurgeon and I am looking for a new Primary I am not sure USAGURL if those hospital are in my region, Is that something I can google and see if there are ones near? I live in Western Mass and I live in a very rural area, I literally have no neighbors and most docs hosptials are at least an hour away at this point I WILL DO THE DRIVE. huh really all these stories and advice helps, keep it coming :)
USAGURL said:
Jessica,
All of us can empathize with your trials.
Do you have a university hospital near you like John Hopkins, Sloan Kettering, Mayo Clinic? Don't know where you live or how your insurance works or if you're in an HMO (if so, there should be more than one rheumy and primary). Might be time to seek new docs.
I was officially diagnosed in two years, but suffered most of my life from autoimmune stuff. Non-experienced docs need hard evidence--not very clinical. When I went to the ER with pleural effusion amd 102 temp. Then it was an easy diagnosis. Hah. ER doctors were the ones that diagnosed my illnesses--not good. Finally, I was referred to a rheumatologist.
I hope you come up with a solution soon. Don't give up.
You got to hold on.
Google: university medical centers in Mass
Sounds all too familiar. I went through doctors putting my ailments off until I had a major flare back in 2011. Once that happened, it was confirmed that I had lupus. It was extremely frustrating. I know it’s hard when you are not feeling well and in pain, etc. But, keep the faith! You will get through it…And, I don’t get it. I hear of some doctor’s who will diagnose someone with lupus who has minimum symptoms. Then, I’ve heard of people not being diagnosed and they have many symptoms. Very inconsistent like the disease itself. I truly sympathize with you; stay strong!
It’s such a complicated disease. …but after I experienced so many symptoms that all point to lupus. …learning studying listening about the disease is so much more clear and eye opening. .what a difference. .from going to “what is going on " to " I know why this is going on” but what sucks is I need the right meds to combat but I can’t get any
I get angry when I hear about docs that won’t look further than the blood tests. My sle was discovered by a kidney biopsy. I have never had a positive ANA result. Neither my rheumy in Vegas or here have any other negative patients. I have no idea how much damage has been done to my internal organs because no one looked further. I had a stroke and several other hospitalizations at age 44 before they took me seriously. 1-2% of sle patients are negative according to the LFA.
Keep pushing til you get the answers you need. Unfortunately fibro and myostosis tend to accompany lupus many times. Don’t give up, you know your body better than anyone.
Good luck
My mom has fibro. …she fought for ten years. …in so much pain and docs kept telling her she needed exercise. .she 170 lbs. …and to eat healthier etc. …ten years and now she’s finally found relief and is living a some what normal life. …she stayed all day in her room or house. .and as a teenager that was very hard for me. .she was always to sick to do anything for or with me. .now that im in my early thirties I truly understand. .now why. …she wad like that. …and here I am with a five year old and two young step kids and I spend most my time down and out can’t move in and out of the docs and er. …my man is so understanding and when is a bad day he takes the kids outside to play or for buggie rides but it makes me sad. …I can’t do those things with them. …I hate being left behind but even a quick ride seems like death to me…I am thankful for my very understanding mom. …and my man because he has seen all this pain. .been to most doc and er apts and researches the disease right along with me. …
Not being able to play with the kids has definitely been a hard part of being sick. The weather has been getting nice and warm, sometimes really hot, in jersey and I feel horrible that I can’t go out and play at the park with my boyfriend and his 4yr old son like we used to do. It’s good that your mom and man are so understanding. That makes it a bit easier than if they didn’t.