lupus/RA -- what to expect/ask rheumatologist?
#271358 - 06/28/06 08:51 AM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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I posted about this several days ago (and thanks to everyone who responded). I've been having symptoms that made my GP suspect lupus or RA. She ran bloodwork on me and my ANA was positive. So off to a rheumatologist I go.
So, from the people here who have been diagnosed with lupus/RA ... what kind of tests should they be doing? (Do I have to shave my legs?) Are there certain things I should be asking?
I also tested positive for anti-thyroglobulin antibodies. My GP is starting me on a small dose of Synthroid to see if that will help, even though the other thyroid values were all within normal range. I looked up this test because I'd never heard of it and lupus was listed as one of the potential causes for a positive. Of course, thyroid disease is listed as one of the potential causes for a positive ANA, so who really knows what's going on at this point.
Anyway, I will do some obsessive Googling on lupus, RA, etc. before seeing the rheumatologist, so I'm not really looking for information on that -- I just want to hear what others had to go through to get diagnosed. And I guess I want to know what a good rheumy should be doing, too -- Michele, I've been following your story (so glad you have this great new doctor, but I'm so sorry her outlook for you isn't that great), and I'm afraid of getting stuck with a crappy doctor who just lets something progress instead of treating it.
Thanks!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Hi Jen! Sorry about the medical problems-I'm afraid I don't know about he thyroid test, my thyroid tests are always normal. However, as far as the ANA goes, you need to get to the bottom of whats causing it. They need to do a LOT more blood work, I just had yet another 12 vials of blood drawn this morning. I don't really know exactly what the names of all the blood tests were but the basics are the RA factor, sed rate, cbc blood count and a liver panel as most of the drugs they would use to treat Lupus or RA can have a negative impact on your liver so that will need to be monitored.
At the bare minimum, I would expect them to do some x-rays, at least hands and feet because bone changes usually show up there first. If you are having any specific problem with any other joints, they should x-ray those as well. They should do an external exam, probably best to shave your legs!  They will poke and prode various places on your body, nothing overly personal. I wore gauchos and a twin set with a tank top yesterday and no bra, so I didn't have to get into a gown or anything.
I remember reading a bit about whats going on but my memory is a bit foggy to say the least. Can you give me a summary of your symptoms and I'll be able to help more!
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Taking it one day at a time.....
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I would definitely shave your legs. When I saw the Rhemy doc for the first time I changed into a gown (it was cold so I had jeans on) and he examined all the joints that I was complaining about, hands, wrists, knees, elbows, feet and ankles.
Like Michele said they will probably do blood work and x-rays. That is what happened with me.
Good Luck!
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Janey
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Jen,
Yes, shave your legs! Also clip your toenails! I always forget that part and my rheum. always spends a lot of time on my feet because they are inflamed while I look at the ceiling trying to pretend that I'm not embarrassed about it! Expect to be sore after the appt because at least my doc always manipulates just about every joint in my body to note the level of inflammation.
Expect to give a lot of blood. Because there are no definitive tests for these types of diseases, there is a lot of overlap and a good rheum should check for other auto immune problems like Sjorgren's, etc, etc.
That's all I can think of right now and my daughter is crawling all over me. I will post again later if I think of anything else important.
Laura
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toenails
#271629 - 06/29/06 12:38 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Thanks Laura! I never would've thought about the toenails -- I've always just been able to leave my socks on even when I had to get undressed, so I don't even think about that. I don't know why I care so much, I'm sure that the doctors see way worse. Though I guess in general you want to avoid being the break room anecdote of the day!
I know you've said that your doctor isn't actually positive that you have lupus -- what symptoms/test results made him give you the tentative diagnosis? I've been reading about the diagnostic criteria for lupus and my head is swimming. 
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thanks Janey. Are you doing any treatment right now or is your doctor just waiting to see if your symptoms get worse?
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thanks Michele ... I can't believe you got twelve vials of blood drawn. I had four taken a couple times recently and had a tough time making it to my car, so hopefully they won't need tons. On the other hand, I do want them to be thorough, so I guess if they need that much blood then I'll give it willingly. A doctor's office is a good place to pass out, after all.
As for my symptoms ... I went to my doctor initially complaining about really bad fatigue and joint pain. On a "normal" day the joint pain isn't bad, I just feel sore and stiff and creaky, but if I try to do anything remotely strenuous, the pain starts getting bad. It's worst in my elbows, wrists, and hands -- my knees bother me too (and actually hurt a lot right now). My fingers also swell up, nothing too bad though. And a little activity goes a long way -- I worked on scraping paint off woodwork a couple days ago and I still feel miserable today.
I do have a moderately bad case of endometriosis, which does cause fatigue and greatly contributes if not causes a lot of lower back pain (it gets unbearable during my period). So, this clouds the waters a bit.
My GP got all lupus-suspicious about a rash I had, but it was on my toe and not a typical lupus spot so I'm not that worried. It did show up when I was feeling really awful and faded away when I started feeling better, but could be a coincidence. I can definitely identify with several lupus symptoms, but since they're also symptoms of thyroid issues I'm not that worried. I guess the only thing that might be lupus-only and not thyroid is that I've been having problems with swollen lymph nodes for awhile, but maybe that could be explained by something else too.
I've also been having breathing problems and my chest really hurts when I try to breathe deeply, but chest x-rays looked OK and all of my allergy tests were negative (except very very very mild reaction to dust/cats) and I don't have asthma, so my pulmonologist is confused on that score. I know from what you're going through that you can have breathing/chest problems with autoimmune disorders, but unless I am mistaken this kind of thing should show up on chest x-rays, so I am going to assume that this is a different problem.
Basically, I am 24 and I feel like I am about 74, and I'm sick of it!
Okay, so that was a novel. Whew! I'll be seeing the rheumy on Monday with tidy toenails and shaved legs -- any other tips/advice you can think of would be much appreciated. Thanks!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: toenails
#271650 - 06/29/06 01:46 PM
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lj
Reged: 09/24/04
Posts: 179
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Jen,
The tentative lupus diagnosis came after a positive ANA and anti-DNA. I'm also super sensitive to the sun. I have solar urticaria which is a fancy way of saying that I break out in welts when I go out in the sun. This can happen just from going into the store and then back to my car, not just from going to the beach or something like that. It depends on the time of year and cloud coverage too though.
I also have strange patches of skin on my scalp that come and go(OK gross, I know. Don't usually tell people about that one). Malar rash has been noted esp. after sun exposure. I also have sore throats and low fevers that last anywhere from one hour to several weeks.
Oh, and of course arthritis. That is what got me to the rheumatologist in the first place. My foot and thumb were so swollen last summer that he didn't think it was presenting like lupus. I did test positive for RA too, but the level was not sky high. My x rays have so far shown no joint damage. I am due for another round this summer.
The thing that confused him most is that my sedimentation rate is only slightly elevated and considering the symptoms and visible swelling, he was surprised.
Keep us posted on what happens. I have read your other posts and I know exactly what you mean about feeling 74 after trying to do anything remotely strenuous. Taking Carson to the park will do it for me every time. We're too young to feel this way!
Laura
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Hi, Jen! This is kind of long, but I hope it helps. I've been really sick the past three years, thinking it was just frequent IBS attacks getting me down, but then realizing that a lot of other symptoms were not normal IBS symptoms. About a year or two ago I had an echocardiogram because I had open-heart surgery as a child and one of the doctors I saw was worried something might be up. But that was normal. Still feeling bad and starting to have anxiety and panic attacks, I continued to see my doctor and push for more answers, especially since I had similar problems in college.
So, my PCP ran the following blood tests (about six vials of blood):
CBC (complete blood count)
Sedimentation Rate
Comprehensive Panel/Metabolic
Glomerular Filtration Rate
Iron and TIBC
These came back normal, even the sed rate. But my PCP knew something was wrong because I wasn't getting better and was suffering from the following: pain with the slightest touch, high blood pressure when I was in pain, difficulty walking, insomnia, strange rashes for the past few years, general weakness, fatigue (sleeping 14+ hours a day), weight loss (down to 104 lbs, so about a 20 lb weight loss in less than a year), joint swelling...oh, and then one week my earlobes swelled up and then another week my right nostril was inflamed! Anyway, because of the muscle pain and swelling and moving and feeling like I was a hundred years old, she sent me to the rhuemy.
The rheumatologist checked my joints but couldn't feel any swelling except in my feet. He said this was good because he could tell my joints weren't damaged. He also moved my limbs around, not sure how to described it... He rotated my arms and legs, bent my fingers and toes. He also checked my skin and asked a million questions about my health history, symptoms, and family history. Be sure to bring a list of symptoms and find out if any family members have autoimmune diseases; he also asked if I had ever experience seborrheic dermatitis, eczema, sun sensitivity, rashes, or frequent fevers. Then he ran more blood tests (about four more vials):
CCP
ANA Lupus Analyzer Panel (5 different autoantibodies test)
some thyroid tests
CPK
RA factor
I ended up having a positive ANA with positive dsDNA autoantibodies (this is positive in 80% of people with lupus) and testing positive for the RA factor. So then the rheumatologist diagnosed me with lupus. He said I had a mild case of lupus (Oh boy, mild?! I really don't want to know what it's like to live with moderate or severe lupus!) because it hadn't affected my organs. After that diagnosis, he had me do a urine test to make sure my kidneys were fine. That came back normal as well.
Now I have to see him every six months and have blood tests once a year to monitor lupus activity. I also have to take Plaquenil/hydroxycholorquine indefinitely, even once my lupus goes into remission.
I just went fot my three month checkup on Tuesday. No blood tests, but he just wanted to see how I was doing with the medication (very well!) and to make sure I see the eye doctor every six months (a very rare side effect of plaquenil is vision loss). I asked him if I should expect to get sick (like colds or the flu) more often now, but he said no because Plaquenil is NOT an immunosuppressant. He also said I could still have flare-ups, but they'll be very rare as long as I'm on Plaquenil and make sure not to over exert myself or tan.
Please ask if you have any more questions. Oh, andLab Tests Online is a great resource if you want to find out more about various lab tests and screening for different diseases.
Edited by Maria!Maria! (06/29/06 02:30 PM)
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Re: LJ
#271661 - 06/29/06 02:18 PM
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lalala
Reged: 02/14/05
Posts: 2634
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Your symptoms are a lot like mine. My sed rate tests always comes back normal, so even though I would have swelling and fatigue my doctors never thought of referring me to a rheumy. It was until things progressively got worse this past winter that my PCP decided to get a specialist involved.
How are you managing your lupus diagnosis?
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From what I know of Endo, it is very painful and can give you the general crappy feeling but it shouldn't cause joint pain or swelling. Auto-immune issues have been linked to changes in estrogen levels, not sure if Endo affects estrogen levels or not but something to ask!
The chest pain can be from inflammation in the cartilage between your breast bones and ribs and that usually won't show up on x-ray unless its really doing serious damage. This inflammation can be caused from strenuous activity, trauma or an auto-immune issue, like RA or Lupus. I can not inflate my lungs fully the swelling is so bad. It hurts to raise my arms or lift anything. This is a very painful symptom!
Rashes are typical in Lupus but alone, not enough to diagnose Lupus. I am very photosensitive but have never really had rashes before. I have a few moles that are "suspicious" and have an appt scheduled with a dermatologist to take a peek! But that probably has nothing to do with the auto-immune issues! 
Not to alarm you but please mention the swollen lymph nodes to the rheumy. Lymphoma can also cause all the symptoms you are describing.
I'd advise you to make a list of ALL your symptoms and approximately when they first started. List what tests you have already had, the allergy tests, thyroid work-up and chest x-rays and other stuff. The doc will want to know how long you are stiff for in the morning, how much activity you can tolerate and what makes your symptoms worse.
I understand being young and feeling VERY OLD!!!! You have time on your side, if this turns out to be any sort of auto-immune illness, with the right treatment, you can avoid many of the problems I'm having! Do NOT be shy with the doc!!!!! You know your body better than anyone else. Just because they have a medical degree, doesn't always make them right! Make your list of symptoms and questions and don't leave until you understand the answers. He may not be able to give you all the answers until he does further testing however, you need to feel that everything is being done to get to the bottom of why you are feeling like this!
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Taking it one day at a time.....
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Re: Plaquenil
#271667 - 06/29/06 02:33 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Is not an immune suppressant so no, it won't make you more susceptible to infections. It is actually a malaria drug! They aren't even sure how it works on the auto-immune diseases!! However anyone with an AI (auto-immune) disease are at an increase risk for things like infections and lymphoma. Plaquenil is a relatively safe drug. The vision loss is rare if you keep the dose appropriate to your weight, I forget the exact ration, but it is still important to have yearly eye exams. Of all the drugs I'm on, the plaquneil seems to have the least amount of side effects. A little dizziness and off kilter feeling for the first few days but it wasn't awful and went away pretty quickly!
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Taking it one day at a time.....
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It's always fun to try to explain to people what hydroxychloroquine is and why I have to take an anti-malarial. I didn't think it would make me more susceptible to infections, but thought it was something I should ask. Other than the lupus symptoms, I don't get "regular" sick that often.
Some good news I wanted to share with you (or anyone else who's interested) is that I didn't experience any side effects with Plaquenil, even when I had to double the dose, and I'm up to 115 pounds now. So I'm gaining about 1 pound a month. Hooray! And, since I went up to 400 mg I haven't had any IBS symptoms - not sure if it's just a coincidence or due to amitriptyline or what, although I'm positive Heather's EFI guidelines have been a great help. I shared this with the rheumy who said he wasn't sure if it had to do with the Plaquenil, but that he's really interested to see what happens with my IBS over the course of treatment. In September, after six months at 400 mg, he's lowering it to 200 mg since I'm still underweight. My rheumy is very cautious - and even though I'll be on a low dose he still wants me to see the eye doctor every six months because I "only have two eyes."
Edited by Maria!Maria! (06/29/06 02:42 PM)
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Maria
#271700 - 06/29/06 05:46 PM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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Quote:
Some good news I wanted to share with you (or anyone else who's interested) ...
Definitely interested. It's good to hear from you again and especially good to hear you're doing so well. Congratulations on the weight gain. (You have no idea how odd it seems to be saying that!)
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Jen= I don't have much to add to what the others said except that my thoughts are with you. I did have a scare with lupus back in January if you remember. I got a + ANA panel but everything else came back negative and then when they ran the panel again it was negative. But I am still seeing a rheumotolgist every 4 months for blood work. She said that because I don't present any joint pain or anything typical that I probably fall into the 1/3 of people whose labs are screwy and will never develop an autoimmune disorder. I pray that she is right. I still feel really good so I am not too worried.
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First off.. Jen.. good luck with everything at your appt!
Secondly.. what exactly is a lupus rash?
is it like red blotches on your skin that go away.. or is it more like an all over rash.. or raised bumps etc...??
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It's a raised red fash on the face covering the nose and cheeks...kinda in the shape of a butterfly.
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Re: Michele
#271776 - 06/30/06 07:12 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks wonderful that you are gaining weight and feeling better! Yay!!!! My IBS has gone from C to D but I'm on a slew of new drugs so I'm sure its from one of them!!
As far as the eyes go, just be sure to keep your exam appts and call them right away if you notice any changes in your vision at all! Even for as low of weight as you are, the 400mg still isn't all that high. They used to use it in much higher doses and thats when the real eye problems started! I also seem to tolerate the placquenil very well, just a little off the first few days but that went away very quickly!
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Taking it one day at a time.....
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wow.. thanks for the info..
my practitioner has lupus, but her's is definitly under control.
I was just wondering if you got rashes all over your body.
Thanks for the info.. Nice to see you again Linz! 
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Angela
#271806 - 06/30/06 08:35 AM
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jen1013
Reged: 05/06/05
Posts: 1322
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Now that you mention it, I do remember that you'd initially had the positive test. I hope your bloodwork continues to be negative and that you continue to feel healthy. I've also read that sometimes people have a positive ANA for no apparent reason, so hopefully that's the case.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Wow, this is great -- thanks, Maria. I'm so glad that you're doing well on the medication.
Isn't higher blood pressure when you're in pain normal? I normally have pretty low blood pressure (normally 80-90/50-60) but I've noticed that when I'm having a bad day that it gets a lot higher. I just figured it was like the stress of pain or something. (Yeah ... my scientific rationale.)
Do you have frequent fevers? I never really take my temperature, but when I do it's normal. I think that this is one of the most common lupus signs so I'm hoping maybe this rules it out for me.
Thanks for the lab test website! This is really helpful. When I get a hard copy of the blood tests I'll have to go back and check it out.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thanks, Ashley. The "classic" lupus rash is the butterfly rash that Linz mentioned -- but you can also get different kinds of rashes elsewhere. I think most common sites are upper body (face, chest, arms, scalp) but they can really happen just about anywhere. From what I can remember reading I think typically they're red/purple and often scaly. But I also think lupus sufferers can have normal red non-scaly rashes, too.
In my case, although my rash could definitely fall in the descriptions of lupus-caused rashes, so could a lot of other rashes. So, now I'm not too sure why my GP thought it might be from lupus, but I'm not concerned about it anymore.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thanks, Michele! That was all great information.
As for the endo, no, it doesn't cause joint pain/swelling, but it can often cause fatigue and lower back pain. And like you said it just makes you feel crappy in general. Endo gets worse the more estrogen you have in your body, but I don't think that endometriosis itself affects the estrogen levels. Not really sure on that one, though, guess I've never thought about it.
I didn't realize that there was chest inflammation they couldn't see on x-rays. Ugh! If they can't see it on x-rays then how do they know it's there?? 
As far as lymphoma goes I thought that since my CBC was within normal limits that this rules out any kind of cancer? Am I continually making blithe erroneous medical assumptions?? I definitely planned on asking about the swollen lymph nodes. Mine are often painful, though, which I think is a good sign, because with cancer it's painless, right? (oops, was that another wrong assumption?)
The rheumy sent me some paperwork to fill out ahead of time -- it's a nice huge long list, so I should be able to get down all of my symptoms. Of course, if he's like any other doctor, I'll spend ages carefully filling everything out and then he won't even bother to read it. 
Thank you for all of your help -- I know that you're having a hard time typing right now so I really appreciate it. I hope your increased drugs kick in SOON and you start feeling better!!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Hi Jen! Many times, soft tissue damage or swelling won't been seen on x-ray. They will palpitate the area, fancy word for pushing on it till it hurts , and pretty much go from there. A lot of my soft tissue damage is from the synovial lining around the joints being swollen and they can see that but if you have ever sprained an ankle or something of the sorts, that kind of stuff usually doesn't show up!
I'm not totally up on my Lymphoma. Not sure if the glads actually hurt or just swell? Not sure how the blood work would turn out. I haven't looked into too much but the rheumy brought it up several times and when I asked her how would I know if I had it, she said the first symptom is often the gland swelling. I've just kind of filed that in the "Gee, that would suck if I got that" category as I've just got too much else to worry about right now!
A lot of auto-immune issues, especially in the early stages are kind of like IBS, not always a definitive test to say yes or no. If the dr doesn't take time to actually read your list of symptoms, find another dr. My old rheumy often blew me off like that but I had typed out FOUR pages of stuff for the new rheumy and she sat down and read it in front of me and asked questions as she was reading!
I'll be at work until 6 today then I'm taking along weekend to catch up on house work and stuff so I won't be back on line until next Wednesday but please keep us posted!!
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Taking it one day at a time.....
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Hi Jen,
All he put me on was 500 mg of naproxin twice a day. I tolerated it fine but after a month I didn't see any difference in my symptoms so I am not taking it anymore. I don't want to stress out my tummy.
Based on the x-rays and bloodwork the Rheumy says I have inflammatory osteoarthritis. There is really nothing they can do for it. No medication that will stop the progression of osteoarthritis.
I have another appointment in Sept. and was told to call if my symptoms got worse. So far things seems to be staying pretty much the same. Frustrating to deal with that is for sure.
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Janey
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Hi Jen,
I don't have lupus but I too have a positive ANA test. They ran the test again because they were surprised that it was positive and it came up positive again. I had thyroid cancer as a teen and am now hypothyroid as it had to be removed (and I am taking synthryoid daily) I also have ulcerative colitis. My family doctor was concerned at first but my GI doctor says that more than likely it is a combination of the thyroid and UC that's causing the positive ANA result.
I haven't had any signs of RA or lupus so I guess they're right that it's other autoimmune issues that are causing the positive.
I hope it turns out to just be a random positive ANA result for you too.
Good luck.
Jenn
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update
#272591 - 07/05/06 10:44 AM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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This was a disaster!! The doctor was horrible. I didn't even see him until 10:30 and I had a 9:00 appointment. He barely examined me at all, other than jabbing me at the traditional fibro tender spots and then half-heartedly rotating my knees around. And he didn't read the huge long form they'd made me fill out.
He ruled out lupus by asking me three questions -- 1) if I ever had mouth sores that lasted beyond three weeks, 2) if I ever had fevers and chills, and 3) if I had bald patches on my head. Okay, I mean, it's not like I *want* to have lupus, but I'm pretty sure that you can still have lupus even if you don't have any of the above symptoms.
So then he said I probably had fibro because of the tender spots. Whaaa..??? The only spots that he touched that hurt were my chest, and that whole general area is painful when you touch it, not just the place he touched. Okay, but see, according to him, fibro is caused by sleep disturbances. So, the reason that I allegedly have fibro is because I'm not sleeping well. And then he scheduled me up for a sleep study.
Am I the only one who sometimes feels like they're at the Mad Hatter's tea party when they go to the doctor?
Oh, and then they made me watch this really crappy video on fibro. It was clearly done around 1989 judging from the really bad hair. And there was one lady who had her eyebrows so arched and plucked she had a perpetual look of surprise. Which really creeped me out. My favorite was when they mentioned "tri-cyclic agents" and showed a drawing of this guy in a trench coat on a tricycle. Clearly not anyone you'd want near your children.
Anyway, he did order a bunch of bloodwork, so my plan right now is to hope it all comes back negative so I don't have to deal with this guy again. I've started on some thyroid medication, so I'm hoping like mad that'll help. I have to see him again in one month and if everything is OK then they'll just check me about once a year for 3-4 years to make sure nothing's developing. If anything looks suspicious -- then I'll go to a different rheumatologist, because I really hated this guy.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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What?! This guy's a doctor?! I wouldn't trust him to go over the bloodwork accurately! I suggest getting a second opinion, anyway, and taking your test results with you. Ugh! I'm so disgusted with how this rheumy treated you, Jen. And I'm also totally creeped out by your description of the fibro video. Ewwww!
Quote:
My favorite was when they mentioned "tri-cyclic agents" and showed a drawing of this guy in a trench coat on a tricycle.
Lol! Ugh.
You're right - you can have lupus without those three symptoms. There's actually a list of eleven criteria that a rheumy will use to diagnose lupus; in addition to your medical history and bloodwork, a patient must have at least four of the 11.
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Re: update
#272602 - 07/05/06 12:02 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, that sounds just awful! What a jerk!! whats the deal with all the crappy doctors?? I agree, you can have Lupus without having those three symptoms! Very frustrating!! I'd suggest waiting until your blood work comes in. Be sure to have them send/fax you a cope of ALL the blood tests they did and what the results are. I'm waiting for a copy of mine that I had done last week and then I can tell you the names of the actual blood tests. How did this dr explain the swelling that you get? Fibro does NOT cause swelling!!
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Taking it one day at a time.....
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Re: update
#272629 - 07/05/06 01:37 PM
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lj
Reged: 09/24/04
Posts: 179
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I agree! This was a disaster! I also agree that you should see some one else. If you really hated him, no reason to go back. I say, find another rheumy. Just have your results transferred to the new doctor.
Laura
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Re: update
#272790 - 07/06/06 11:23 AM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Quote:
What?! This guy's a doctor?! I wouldn't trust him to go over the bloodwork accurately! I suggest getting a second opinion, anyway, and taking your test results with you.
You know, I did get a little suspicious when I saw that his degree was from "SpecialistDegreesFast.com" ...
I have a follow-up with him on August 3. If all of the bloodwork looks OK (and I'll be sure to actually look at it myself) and I'm not getting worse, I'll probably wait before getting a second opinion. I'm having surgery for my endometriosis in early August and I'm also starting Synthroid, so I'm really hoping that between the two it'll clear up the majority of my symptoms.
Is that basically eleven symptoms when you talk about criteria? I read a whole bunch of lupus stuff last week but now it's leaking out of my brain.
I love the new picture! You look fantastic! 
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: update
#272793 - 07/06/06 11:37 AM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Yeah, what's up with the majority of doctors sucking so much?? Don't you wish there was some kind of national registry of doctors where you could vote and put in comments? Okay, I know that these sites exist, but I think usually they cost money, and I'm too cheap to pay money to complain about bad doctors.
I Googled the doctor I went to and he graduated from med school in Iran in 1994. I wonder what health care is like in Iran? The med school's website's English is really horrible, which is a little scary, but then again, it's Iran, and you don't need to speak English to practice medicine.
Can you get a copy of the blood tests without actually asking for all of your records or being on the spot so they can photocopy the sheet? Can I just call them up and ask them if they'll mail me a copy of the results? What kind of blood tests did you have done? I mean, I know you said you don't know exact names, but in general what were they testing?
He didn't explain the swelling. I said it wasn't that bad, so maybe it's normal for people to get swelling? I never used to have swelling, though.
I'm just so confused! And I hate crappy doctors who make me feel even more confused.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: update
#272794 - 07/06/06 11:41 AM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Yeah, I think if it seems like I'm going to need a rheumatologist, then I'll definitely go elsewhere. I'll have to wait to see what the bloodwork looks like. I'm still hoping it's my thyroid. At least then I won't have to watch any more weird medical videos.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: update
#272799 - 07/06/06 12:43 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I have "googled" all my doctors as well. I agree, I believe most of the sites that list complaints and such about doctors do cost money!
By law, in the United States, you are entitled to any or all of your medical files. They may require you to sign a release form but that can be done via fax if you have access to one. All the lab reports I've ever seen have been on a separate paper and it will show your result and what the "normal" range is supposed to be.
They retested my ANA (generally for Lupus), Thyroid, White blood cell counts, Sed Rate (measures amount of inflammation in your body) RA antibody and a few other things. I'm waiting for the list to be sent to me and I'll give you all the exacts as soon as I get it.
Its not normal to have swelling for no reason. Sure, women's feet will swell a bit from hormones and such but generally speaking, swelling is not normal and I would take pictures of the swelling to show the doctor next time you go. Especially if its a relatively new symptom!
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Taking it one day at a time.....
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Quote:
You know, I did get a little suspicious when I saw that his degree was from "SpecialistDegreesFast.com" ...
Are you SERIOUS?
Here's a link to those criteria: Rheumatoloist/Doctor's Criteria for Diagnosing Lupus .
My only resource for lupus right now is the lupus.org place. I read some books and websites, but they didn't make sense or they just seemed full of crap.
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I don't see you posting as often - and I almost missed this. Thanks for supporting my weight gain. Ha! (My doctor feels the same way and says she's never tried to help a person put on weight before.)
Anyway, great to hear from you. I hope you're doing well. Hey - did you ever get Ascending Peculiarity?
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Re: update
#273099 - 07/08/06 01:19 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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Quote:
Quote:
You know, I did get a little suspicious when I saw that his degree was from "SpecialistDegreesFast.com" ...
Are you SERIOUS?
No!! I was just kidding. I was trying to be funny. I've found that lately I don't seem to be doing a very good job of it.
Thanks for the link! I guess I'll call the office next week and ask to have a copy of my results sent to me. I hope I can figure out what they mean so I know if I should dump the rheumy. 
P.S. Did you ever find that book to see if it was the one you were looking for? The one with the hermit and goats or something like that?
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Maria - Re: Sand!
#273111 - 07/08/06 02:46 PM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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No, I'm not posting as much. I find I've said pretty much everything I have to say - often many, many, many times over.
As for weight, too bad we can't share - I could send you some of the weight I'd like to lose!
It turned out the library had Ascending Peculiarity, but for some reason I didn't read it when I figured that out and I had, of course, forgotten all about it - I'm glad you reminded me. It's gone on my library list. Now if I can just remember to take the list with me and check it once I'm at the library...
Drop me an email - my email address is in my profile. I'll send you a book report.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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