I'm not sure if I'm posting this correctly but I do have a few questions. Four years ago. my 17 year old daughter was diagnosed with Lupus. Due to the fact that I had so many similar symptoms, my doctor ran a ton of blood work in anticipation of me going to see my daughter's rheumatologist. The doctor was given my blood work and she came in the room and told me that I was an interesting case. She went on to say that I had tested positive for Lupus and RA but that I didn't have all of the proteins for either one of them. She continued and told me that I had connective tissue disease and that she would call me "Lupus Like". I have been taking Plaquenil since then. (Sorry for spelling errors). She doesn't explain anything to me.
She has me come in once every 4 months, and I try and explain to her that I have increasing pain in my joints, which she just ignores. She has also ignored a rash on my scalp that I have had since the very beginning of my visits with her. She has just brushed them off but I am now getting bald spots that are very hard to cover. I also keep trying to tell her that I am having trouble with my short-term memory but again, she just blows me off. She has always been good with my daughter though.
She has done blood work one time and I noticed that the blood work indicated an incorrect birthdate so I am not entirely sure if it was my blood.
My PCP just ran my blood work and I know that my inflammation levels came back normal. But as I start doing more and more research, I have seen that that is not necessarily unusual. I live in constant pain, my joints are getting more and more stiff and painful, yet they rarely swell. I am constantly exhausted. I have the rash on my scalp and a rash on both of my legs that she said she didn't know what was. I have also been diagnosed with pleurisy twice in the last six years. I also have Trigeminal Neuralgia and Sleep Hypoxemia.
In addition, my 28 year old daughter was diagnosed with MS two years ago.
Hi, Cathy, I'm sorry about the runaround. When a patient feels like the doc is giving them the brushoff, and there are no answers to concerns, it may be doctor shopping time. I see you are about an half hour from Hopkins. Dr. Michelle Petri at the Hopkins Lupus Clinic gets rave reviews here. Perhaps you could get an appointment?
A second opinion is worth a shot One thing the rheumies forget is just how distressing all these symptoms are to the patient- since they are not life threatening - hard to get their attention until something really drastic occurs. Unfortunately the side effects of the few meds available to treat are often worse than the disease Have you tried NSAIDS (motrin, alleve) along with your plaquenil?
I know that when I have been in the hospital my dr loved talking to my husband or family. Even though I love my rheumie, I felt I was taken even more seriously when my husband would validate something that I had said. Perhaps a family member could could come with you and they can tell your dr how this is affecting your life. Also, I have never had the SLE lupus anti-dsDNA by the way. (Assume that is what you are talking about?) Approximately only 30% of SLE patients have that.) However when I had my last huge flare, my dr told me that I went from a patient who barely qualified as having lupus to a " poster child" ( his words) for SLE exhibiting hi sed, crp, serositis etc.
Some drs are hesitant to label a patient as having lupus. But I was turned down for life insurance years ago just for the fact that I was on plaquenil. My dr had been careful not to put anything in my file because he wasn’t yet 100% sure. I was also turned down last year for additional life insurance through Aflac. They actually told me that if I applied today I would not get approved in the first place and basically be happy with what I already have. Apparently you can’t discriminate on health insurance any more because of new laws, but you can for life insurance. Best of luck with your dr.
Thank you, I didn't know Hopkins had a Lupus clinic. I had a really hard time finding anyone that would take my daughter because she was under 18 at the time of her diagnosis that I went with the first person that would take her and we just hung in there.
It would likely take months to get an appointment but I've waiting four years so a few months will seem short.
I was using NSAIDS but I had reached a point that I was taking so much that my PCP actually told me to stop and put me on narcotics. This was before my diagnosis of anything. He had referred me to a Pain Specialist that I spent two years working with without any results when he finally said that I had been through enough and started the narcotics. I hate them now but at the time, I was desperate,
poobie said:
A second opinion is worth a shot One thing the rheumies forget is just how distressing all these symptoms are to the patient- since they are not life threatening - hard to get their attention until something really drastic occurs. Unfortunately the side effects of the few meds available to treat are often worse than the disease Have you tried NSAIDS (motrin, alleve) along with your plaquenil?
Eagle - Interesting thoughts. I was beginning to think that she was reluctant to diagnosis me, well more definitively than Connective Tissue Disease, after some of the research I have done recently. Unfortunately, I don't have a family member to go with me that would be able to push any harder than I do to ask questions....that's always been my role in the family :) As for which tests I was positive or negative for, I don't know, she never explained anything.
Eagle41 said:
I know that when I have been in the hospital my dr loved talking to my husband or family. Even though I love my rheumie, I felt I was taken even more seriously when my husband would validate something that I had said. Perhaps a family member could could come with you and they can tell your dr how this is affecting your life. Also, I have never had the SLE lupus anti-dsDNA by the way. (Assume that is what you are talking about?) Approximately only 30% of SLE patients have that.) However when I had my last huge flare, my dr told me that I went from a patient who barely qualified as having lupus to a " poster child" ( his words) for SLE exhibiting hi sed, crp, serositis etc. Some drs are hesitant to label a patient as having lupus. But I was turned down for life insurance years ago just for the fact that I was on plaquenil. My dr had been careful not to put anything in my file because he wasn't yet 100% sure. I was also turned down last year for additional life insurance through Aflac. They actually told me that if I applied today I would not get approved in the first place and basically be happy with what I already have. Apparently you can't discriminate on health insurance any more because of new laws, but you can for life insurance. Best of luck with your dr.
dancermom - I'll be calling Hopkins to see about an appointment and to see if they take my insurance. I am also wondering if I should be seeing a Dermatologist that works with autoimmune diseases about the rash on my scalp? How does something like that work?
dancermom said:
Hi, Cathy, I'm sorry about the runaround. When a patient feels like the doc is giving them the brushoff, and there are no answers to concerns, it may be doctor shopping time. I see you are about an half hour from Hopkins. Dr. Michelle Petri at the Hopkins Lupus Clinic gets rave reviews here. Perhaps you could get an appointment?