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Doctors?
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An_239461 posted:
I'm 59 and was diagnosed at 27. I thank God for that doctor who helped me back then. But now, I can't find not one decent doctor who really knows anything about Lupus. Why aren't there any Lupus doctors? I still have to see a rheumatologist who equates my symptoms and pain with arthiritis who does absolutely Nothing for me! Everything he knows is exactly what I've read in the same books..not everyone is a "textbook" case!! And why is it that most of them DON'T listen when it's me who has been living with this disease for years and I (do) know more about my illness then they do? I actually had doctor in Manhattan, NY who told me I shouldn't read & then handed me a prescription for antidepressants.
I have yet to meet a doctor who would help treat me for the pain I'm in (especially the cronic headaches & migraines).......but always ready to write out a script for antidepressants. Why is it that any doctor can write (and will) give antidepressants when that should be an area that only psychiatrists have the right to do?
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lupylisa44 responded:
Finding the right doctor is difficult! But, rheumatologists ARE lupus doctors! If you look in the Resources section of this site, there is a physician finder it will give you a list of all the rheumatologists near you. If you are having migraines you might want to try seeing a neurologist.

Good luck!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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DoinTimeOnEarth replied to lupylisa44's response:
Thanks for the reply but I do Not agree that "rheumatologists" are Lupus doctors. I have had SLE for 32 yrs now.....menopause has made my symptoms so much worse. Yet, gynocologists never gave any answer except NO to HRTs without any explanation. Besides, why should I see a neurologist (which I have & they did nothing) for migraines when chronic headaches are one of the symptoms of SLE?........so is losing your hair & nail beds, as well as suicidal tendencies (ALL OF WHICH I HAVE) How many doctors should I see since Systemic Lupus affects all organs & glands. BTW, my thyroid is also affected, yet my endocrinologist doesn't seem to not know anything about Lupus or what's wrong with my thyroid gland since I keep losing weight and I feel weaker, sicker & in more pain.
All these doctors I've seen for different symptoms of Lupus do nothing except give me more tests and No medication. Could it be that I just see a bunch of crappy doctors or maybe there should be a doctor who actually specializes in Systemic Lupus? Afterall SLE is a disease and when you have a "disease" you usually see ONE doctor who should take care of it.....in that case I'd be seeing a different doctor a day for all the symptoms regarding Lupus.
 
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lupylisa44 replied to DoinTimeOnEarth's response:
I definitely see your point!!! I often wonder why there are no auto-immunologists. It would be great if there were one doctror for everything that is involved with lupus . Unfortunately, there are so many different things that go wrong and so many systems affected by lupus it becomes necessary to see many different doctors. I have seen a physiatrist, psychiatrist. oncologist, hematologist, cardiologist, endocrinologist, gynecologist, gastrenterologist, neurologist, urologist, nephrologist and just about every other "ologist" out there. It has also been my experience that many of them know little about lupus.


After I had to do cytoxan treatments for lupus nephritis I was instantly in post-menopause at 35. My gynecologist did put me on pharmaceutical HRT and it made a huge difference for me! I feel much better while on it. Getting the right combination and right levels was a long arduous process, but once I did the result was wonderful! I have been taking HRT for over 10 years now.

The Pharmaceutical hormones I was taking were discontinued and the generics didn't work well, so I recently switched to bio-identical HRT and love them! The dosage is tailored to my specific needs. I take estrogen (E2, E3) progesterone and testosterone. My gyno doesn't believe in the bioidenticals so I had to find a doctor who did. It took a ton of research but it was well worth it!!! They key, I found, is to find someone who practices integrative medicine. But be careful! Some integrative doctors tend to go too far with the natural medicine mumbo jumbo. It is important to find one who is well balanced in both traditional and alternative/natural medicine.

Mine is a Harvard educated, board certified MD who also practices holistic and alternative medicine. Not only does she prescribe my bioidentical HRT, she is also treating my thyroid issues. She the full range of thyroid testing, not just TSH. Luckily for me she is also very well versed in lupus.

As I said before, finding the right doctor can be difficult. Finding a doctor whom you like and respect is essential! You have to have someone who will listen to you and treat you with respect, and explain the treatment they are prescribing. . Since there are so many different specialist involved, having doctors coordinate your care is vital! I try to make sure that my doctors communicate with each other and send copies of all tests and records to my rheumy and my pcp. I also get copies of everything for my own medical file so they are available if a doctor requests them.

I know first hand how your thyroid being off can affect everything in your body, and mind. Including migraines and hairloss, mood changesThat, combined with an imbalance in your female hormone, wieght changes and s whole slew of other symptoms. It can literally be pure hell! I wish you luck in finding someone who is willing to treat your horomone imbalances. Once you get them balanced, you will be amazed at the difference it can make in EVERYTHING!



Lupylisa
With love, with patience and with faith, we'll make our way.
 
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lupylisa44 replied to lupylisa44's response:
Here is the organization I used to find my PCP:

http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.76F0/Integrative_Medicine_From_ACAM__the_voice_of_integrative_medicine.htm
With love, with patience and with faith, we'll make our way.
 
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alupus replied to lupylisa44's response:
I am new to lupus and RA but I have had sjogrens for years. I have been to several different doctors but i have found the most knowledgeable to be the allergist/immunologist and i have stuck with him. he is a specialist on the immune system. not all allergist are immunologist but it may be worth a shot for you. it sure worked for me.
 
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resttheweary replied to alupus's response:
Hi, i totally aggree. I've seen a rheumy, he ruled out everything, so of course i got the diagnosis for fibromyalgia. But I, like you, think that it is the best decision to see an immunologist, as this disease has to do with our immune system. I have all the symptoms except positive ANA, but my symptoms are getting worse. I just wonder how much longer I can go without proper treatment before permanant damage is done. In the last 4 months, i've ran 104 degree and 105 1/2 degree temps. Things are certainly getting worse. My rash is on my upper chest, in the bra area, so of course my PCP overlooks that and calls it fungal, even tho i've had it for over 8 years. Oh well.
 
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DoinTimeOnEarth replied to lupylisa44's response:
THANKS so very much Lisa. My computer broke so I haven't been on this site until now. I cannot afford bio-identicals and I have medicaide since I'm on disability and surely don't get enough money to even pay my rent. But thank you so much for your feedback. There certainly is NO reason why we should suffer with menopause especially made worse having Lupus. This small town I live in has one hospital and all these doctors belong to this one hospital that btw has the worst reputation. They've already given me no help and a couple of surgeries that have made my condition worse. So (needless to say) I'm in despair and just disgusted. I think about taking my life quite often though I live by faith. There is NO magic pill that will ever take away the feeling of wanting to die but at least there are people like you and here on this site who are supportive. Thank You & God Bless
 
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lupylisa44 replied to DoinTimeOnEarth's response:
I am here whenever you need me!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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DoinTimeOnEarth replied to lupylisa44's response:
Hardly on this thing...but just read your reply and wanna say a big THANK YOU, Lisa. I'm sorry for all you've been through as well. One thing that I haven't read on here is "suicidal tendencies". I've always had them & started acting them out when I hit puberty. For me it doesn't really have much to do with depression. When I was diagnosed in my mid 20s I was told that because Lupus affects the organs, my brain didn't function normally so it was affected having lupus. Last time I saw the rheumatologist I asked him if he had lupus patients with those tendencies and of course he said YES! I'm bringing up this subject because so far I haven't read anybody address that issue. I've been given many different antidepressants but I felt worse taking them aside from the side effects like headaches & sweats which I already suffer with. So I'm just wondering about others or maybe it's considered TABOO to bring up!?
 
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lupylisa44 replied to DoinTimeOnEarth's response:
So let me get this straight, it is the doctors who think your lupus brain involvement is causing these thoughts? Other than anti-depressants have they offered any treatment suggestions that might help you? Have you ever done any psychotherapy?

I have tried every anti-depressant out there and have found that Wellbutrin works best for me and it doesn't have as many side effects as the others especially that "flat" feeling they give me.

I don't think the subject of suicidal tendencies is taboo, it's probably that most people don't want to share those types of thoughts with strangers. We have had several posters here in the past that have said something similar to what you are saying. Everyone has those thoughts at some point in their lives. I am no holy roller by any means, but my faith has gotten me through some very hard times.

Just curious, are you taking prednisone? The reason I ask is because it caused me to have severe depression and suicidal thoughts. So bad that I ended up in the psych-ward for a week. I didn't try to kill myself, but I kept saying that I wanted to die! It turned out to be what is called steroid psychosis. Needless to say, I got off the prednisone and now take medrol instead. It doesn't affect me the same way thank goodness!

Hang in there kiddo!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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anowlin responded:
First thing that hits me is that you talk about not finding a rheumie who''ll listen to you, really listen to you. Can I ask where you're located, or even one better, the Arthritis Foundation maintains a list of preferred rheumies. You might find that helpf

Antidepressants do have a function and not only for mood swings or plain garden variety depression. They've been QUITE effective for the relief of pain and for sleeping, So, as far as I can tell, your rheumie is treating your pain; it's just that he's not telling you what he's doing and WHY. That communication 'piece' leaves a lot to be desired in the medical community.
 
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anowlin replied to lupylisa44's response:
Lupylisa,

My rhemie here in the Springs sent me to National Jewish in Denver to be evaluated for shortness of breath.The pulmonologist there wanted me to see a rheumie who was had as his subspecialty, pulmonolgy. I'm sure w/ nephritis, you're hooked up w;/ someone, but if you're ever looking, I'd hightly recommed that place.

THere's probably a rhemie there who has as his subspecialty, hephrology. But, I agree, communication to the PCP isn't good; no, wait a minute. NJH did communicate, but other places didn't.
 
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lupylisa44 replied to anowlin's response:
Anowlin:

My rheumy is the one who treats my lupus nephritis. When I lived in Michigan, I had to see a hematologist/oncologist to get my chemo (cytoxan) but when I moved to CO my rheumy took over that part of my treatment and never mentioned seeing another hem/onc or a nephrologist for it. Hopefully, the increase in steroids and cellcept will do the trick and I wont have to do the cytoxan again/

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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DoinTimeOnEarth replied to lupylisa44's response:
Hey Lisa, haven't been on here in weeks. I had 2 painful abscesses on both sides of my behind and couldn't sit down or even lie down without being in so much discomfort. Then finally after getting them taken care of the antibiotics made me so sick and naturally my immune system brokedown. Finally, feeling like it's getting better but in answer to your question YES. I take 20 mg. of prednesone and for me it's always been a miracle drug without any depression. I think once I move (which I'm hoping & praying to do) I'll find much better health care. I only wish I could take MORE prednesone but my bones are crumbling since it always took away the pain, helped me to be more alert, and I never felt depressed on them. I have tried most antidepressants but they only make the chronic migraine headaches & sweats so much worse. Thanks for responding. I've been so stressed & down since I have NO emotional support ...... but more like abuse from too close family members who just happen to be bipolar! So I'm really hoping to move from here since I'm usually alone and isolated. Maybe will better healthcare and NO stress from other peoples "sickness" that they have had NO therapy for (AND Yes, I have had therapy & lots of it) I just might do better. I don't mind being alone it's better that usually being antagonized!?! I look forward to finding a place that will be more peaceful and conducive to my Faith and Prayer since that helps more than therapy ...at least for me it does.

ThankYou for asking Lisa.....I'll let you guys here know whats going on but I'll be busy looking for a place since I have to be out of here by Dec 8th. If you don't mind much ALL YOUR GOOD THOUGHTS will be so welcomed. As I wish everyone the very best with their health especially with the weather change which can be pretty tiring and brutal till it goes in remission.


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