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Old 11-19-2012, 09:44 PM   #1
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First trip to a rheumatologist - what do they need to know?

This has been the year from hell where my health is concerned... I haven't gone a month without at least one trip to my GP. He's sent me to see a cardiologist, pulmonologists, an orthopedist, physical therapists (because of their schedules my PT is split between three people), and now it's time to add a rheumatologist to the list. One thing that almost everyone I've dealt with has agreed is that there's something auto-immune going on.

In the first half of the year I had a sinus or respiratory infection of some kind almost continuously. Three of them involved a 102 degree fever (which is as highly unusual for me as my getting sick so often in the first place.) I had four antibiotics in five months, and I never recovered from one infection before the next one arrived. Thankfully, the last antibiotic (and reducing the stress in my life to a bare minimum) seems to have licked that problem.

The last infection included chest pain and tightness, shortness of breath that lasted six weeks, and severe asthma. I've had mild occasional asthma since I was 20, but never anything like that. A few weeks ago I had a second severe asthma attack, this time without any respiratory illness to trigger it, and I spent a few days in the hospital because the asthma meds made my heart and blood pressure go wild and they wouldn't come back down again.

In mid-July I went to bed fine and woke up in the morning feeling like I'd been run over by a truck in the night. I had major muscle and joint pain and stiffness. The doc gave me daily naproxen for a month and when I was still having problems he switched me to meloxicam. It works great, but if I skip a dose the pain and stiffness comes back.

Other occasional symptoms that may or may not mean anything - random roving itches that turn into pain when I scratch them, I'm unusually sensitive to pressure on my torso (especially the cats standing on me), bladder spasms, taking a deep breath hurts my chest, absolutely NO libido (it's always been low, but this year it's nonexistent), thin fragile skin (especially in my skinfolds), and I get tendonitis more often than anybody else I've ever heard of. When I get sick, I get VERY sick VERY fast. If I stop eating and drinking, I can go from normal to practically comatose in less than 24 hours. I get very weak, shaky, and confused, and too nauseated to eat or drink anything except saltines and gingerale, all of which which I attributed to low blood sugar, but the nurse checked for me while I was in the hospital and said I was fine. They gave me potassium in the hospital and I felt wonderful very quickly.

I have a lower back problem and a bad leg, with recurring sciatica. The orthopedist said my xrays showed arthritis in my hips and back. I've been limping badly and suffering foot drop this year. I have issues with balance and co-ordination and I can trip over things that aren't even there. Lately I've been using a cane when I get tired. I've been in physical therapy this month but it's too soon to tell whether it's actually helping. The main thing it's shown me is that the line between being okay and total exhaustion seems to be paper thin and I can't do nearly as much as I think I should be able to.

Because of my asthma attack they put me on a 12 day course of prednisone and it was like a miracle - every single thing that is wrong with me went away for two weeks!

The question really is, which of these many things is the rheumatologist likely to be interested in hearing about?
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Old 11-20-2012, 03:39 AM   #2
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Re: First trip to a rheumatologist - what do they need to know?

Kaji, hi & welcome. I'm sorry for your problems, not easy, but glad you're consulting a rheumatologist.

In answer to your question, "What does a rheumatologist need to know about?", I think the answer is EVERYTHING. Here's why. My current rheumatologist is the best & clearest thinking dr. I've encountered. Before my first appt. his staff asked me to fax my LIFETIME medical history, in my own words. My first draft was truly absurd, pages long. So I edited ruthlessly down to a single page, using only sentence fragments, in this format:

My name & contact info at top. Also, name of referring physician (if any), with contact info.

Next, date spans, symptoms, etc. I kept my chronological so dr. could see how I had evolved over time.

First symptom entry started with a date span for early childhood to recently. This entry conatined my life up to the point of things REALLY went wacko. Here I included added only brief comments about the things I had during those years, figuring really old history was probably less germane.

Then I did separate lines for each symptom that arrived from that point on. I used an "open" date span (like "2010 to Now") to convey that the symptom is still occurring, or a fixed span (like 2010-2011) to convey it happened but abated. Then added words to describe the symptom. Then details: what it felt like, meds taken for that symptom, lab results (if any), diagnosis made by some other dr. (if any), whether hospitalized, etc.

Then I did the above for all remaining symptoms.

My final line, after I exhausted my symptoms, was a list of attachments, like labs.

In my case, I suspected before my first rheumatolgy appointment that I had lupus. And I knew it was a brute to diagnose, as it can feature things coming & going over years, and building more symptoms over time. But I don't think that's true only of lupus, so I think the above organization could be used for many things.

I hope this helps a little & that others add their suggestions. When do you go? I hope you post again soon. Wishing you good luck & sending my best wishes, Vee

P.S. What's your "tendonitis" feel like? I had decades of episodic fiery pain along the long bones of arms & legs, shins particularly nasty, from age 13 on. During my worst episodes, I couldn't walk, it was that bad.

 
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Old 11-20-2012, 05:39 AM   #3
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Re: First trip to a rheumatologist - what do they need to know?

Hmmm.... thanks for getting back to me. My appointment is next Wednesday, and they asked to see any bloodwork and xrays I've had done. They didn't ask about my history, but maybe I should write something very brief down. I don't have a lot of early history to report, it's only this last year that I've had to resort to doctors.

My tendonitis is regular old tendonitis, it's just that I don't think there's a major muscle group it hasn't hit at least once, starting from when I was about 15. I get tendonitis twice a year, every year. My friend has MS and since the latest developments she keeps trying to tell me I sound just like her, but I don't think that's very likely. The most significant thing I can think of right now is that the prednisone completely eliminated EVERYTHING that was wrong with me except my basic back pain, and I REALLY realised how long it's been since I've felt like a normal person. And two days after I stopped taking it, the symptoms are already starting to creep back.
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Old 11-20-2012, 08:28 AM   #4
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Re: First trip to a rheumatologist - what do they need to know?

Hi. I wrote up those notes mainly because I was asked to. Funny, but even *I* could see my patterns as it took shape, but didn't know what they meant, of course. But it can't hurt to take notes along that are brief & organized chronologically, so when dr. asks, you'll have it all at your fingertips.

As you say, comparing pain with others isn't always so useful. Dr. should ask questions that enable him to categorize your kind(s).

I'd take my meds along, or at least a list of everything taken recently. (Certain meds can even trigger autoimmune conditions in susceptible people, or trigger a flare in people who already have an A/I. Sulfa antibiotics literally almost killed me as a young child, several times, before my drs. caught on.) Also, I agree with you, the fact that Prednisone relieved almost everything is potentially very useful info.

I hope you have an appt. that starts bringing shape & clarity, or if it's NOT something in the ballpark of rheumatology, that you get redirected to other path(s). That's what stressed me the most, seeing multiple specialists with no one able to pull it all together. Again, good luck! Best wishes, Vee

 
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Old 11-20-2012, 01:06 PM   #5
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Re: First trip to a rheumatologist - what do they need to know?

I've just spent an interesting few hours combing through ten years worth of entries in my computerised diary. It's interesting that some things have shown up years earlier than I thought they did, but other things I never wrote down at all so I have no idea how often or when I've actually had bladder spasms. I just know that I get them 'sometimes'. I actually wrote about left-sided chest pain in 2005 as well as having it in 2009, last year and earlier this year. And so on.
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Old 11-21-2012, 04:24 AM   #6
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Re: First trip to a rheumatologist - what do they need to know?

Hi. I think the "when/how long" is less important than just getting your symptoms listed. The number & variety alone can suggest certain conditions as more likely candidates.

I'd had GI problems, but tests ruled out the inflammatory conditions (UC & Crohn's), also Celiac. Urinary problems (spasms, frequency and urgency) that didn't quite rise to the level of Interstitial Cystitis. Breathing episodes that didn't seem like asthma or allergies. Flu-like episodes that weren't flu. Also migraines, blood abnormalities (high sed rate, low WBC, low vitamin levels, anemia), fatigue, pain, low-grade fever, hair loss, repeated infections (UTI's, sinus infections, and conjunctivitis). Finally, photosensitive rashes that made my GP suspect lupus. And lupus, it was.

I'm not suggesting that you have lupus (I couldn't know, I'm only a patient). Instead that a good rheumatologist will have encountered the many symptoms that can occur in the various AI's. So I'd list all, even if you fear your list is unduly long &/or looks strange, as though you're complaining or something. Good luck with your appt. Sending best wishes, Vee

 
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Old 11-23-2012, 10:33 AM   #7
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Re: First trip to a rheumatologist - what do they need to know?

I just sat down and made my 'list' to take to the rheumatologist with me... I don't know if it doesn't make sense because there's not one thing going on, it's more than one. Compared to the stuff a lot of people are talking about it's very small potatoes indeed. I hope I'm not wasting everyone's time. But here it is...

I normally do not go to the doctor unless I'm pretty sure that there's something that needs fixing (eg. I need a presciption.) I usually deny there's anything wrong with me until it can't be ignored any more. This year I've been at my GP's office at least once a month instead of my usual once a year. I have seen a cardiologist and had an echo-cardiogram twice (perfectly normal). I've seen two pulmonologists for major asthma attacks. The first pulmonologist expected to find chronic asthma but it wasn't there even though I was seriously short of breath. But four months later I was admitted to Hospital for another attack. And I've been to the orthopedist who sent me to physical therapy for my back problem.

Six months of basically continual upper respiratory infections and/or sinusitus this year. Three Z-packs and 12 days of levaquin. Three 102 degree fevers (highly unusual for me.) Every time I was placed under stress, I got sick again immediately afterwards and I never really recovered until June, when I resigned from a stressful volunteer position and gave up my other volunteer work to stay home and rest.

On medications for presumed arthritis since the end of July. Naproxen for a month (worked but didn't last long enough) and then Meloxicam 7.5mg twice a day. Arthritis meds work extremely well as long as I don't skip a dose. Since my hospitalisation at the end of October I've been on meds for high bloodpressure and elevated heart rate and asthma. Was given 12 days of prednisone for asthma and it dramatically improved ALL my other symptoms except back pain.

Symptoms are:

- frequent urination (approx once an hour while I'm awake), bladder spasms and pelvic discomfort/hypersensitivity that comes and goes. If I don't happen to wake up to go to the bathroom during the night my bladder 'locks up' and it's very difficult to persuade it to relax enough to work in the morning. If I know I have to travel, I don't drink and get a terrible headache that night. Often I think I have to pee urgently, but there's not much there.
- fragile skin, especially in skinfolds.
- extremely low (ever-decreasing) libido
- aching joints, arms and legs if I don't take my meloxicam. Exacerbated by lack of sleep.
- shuffling walk and stiff, awkward hands (both only if I miss a dose of meloxicam)
- Left leg can become very unstable. Foot drop and limp drastically decreased when I took prednisone and they have yet to return.
- left hip becomes agonisingly painful for a few days if I overdo. The pain used to be on the outside (doc said it was sciatica) but it's moved around to the front and inside of my leg.
- xrays indicated arthritis in hips and lower back
- shakiness and weakness that comes and goes at random. Thought it was hypoglycemia but my bloodsugar is normal every time it's checked. If I can't or don't eat, I become EXTREMELY shaky, weak, and disoriented within 24 hours. In the ER, I went all day without eating, but I had two bags of IV fluids. By 4 that morning I had to call a nurse to help me because I couldn't figure out how to get out of bed.
- the stairs to our apartment can be extremely challenging. On a good day I can go up and down 5 times, on a bad day I don't try once.
- high blood pressure and heart rate, also elevated pressure in my eyes at 25.
- scar on left retina, appeared overnight at 20. Affects peripheral and night vision. No known cause.
- anxiety and depression. Has been gradually becoming less of an issue over the years, but still present.
- lower back problem. Extremely tight muscles from the waist to the hips. Massage was extremely painful. The tops of my legs spasm every time I'm doing my leg exercises.
- very low stamina/tolerance for exercise. One minute I'm okay, the next I'm shaking with exhaustion and having trouble standing.
- speech slurs when I'm extremely exhausted.
- chest pain if I breathe in deeply (usually left-sided, occasionally central), shortness of breath, and asthma especially at night.
- low potassium? Was very low in the hospital.
- hands and occasionally feet go numb overnight. Left arm has a pinched nerve that causes numbness if I lie on that side.
- dermatitis/excema under stress. Various body parts. Had childhood excema on my feet till puberty, and on my writing hand in adolescence.
- MANY bouts of tendonitis since puberty. At least once a year. Feet, ankles, knees, shoulders, chest, wrists, thumb. Generally takes 3-4 months to clear up. Often one side is followed immediately after by the other (esp. in my legs).
- PCOS suspected but testing was inconclusive. Excess facial hair, menstrual irregularities (disappeared abruptly at 35), obesity etc.

Family History - father has asthma/allergies, mother has allergies/chemical sensitivities. Grandfather had emphysema. Grandmother had something strange and unidentifiable in her later years that made her extremely ill on a regular basis. She died because she fell out of bed one night and was too frail and disoriented to get up again. Doctors expected to find Parkinsons disease or Alzheimers in her autopsy but her brain was normal.
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Last edited by Kaji; 11-23-2012 at 10:37 AM.

 
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Old 11-23-2012, 10:52 AM   #8
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Re: First trip to a rheumatologist - what do they need to know?

Well, many of your symptoms do point to autoimmune disease. Has anyone who suspected this done any blood tests for it? The chest pain with deep breath sounds like pleurisy, common in lupus. The shaky, weak confused episodes sound like low blood sugar, and a 5 hr glucose tolerance test has to be done to diagnose it properly, unless you can "catch" it during an episode with a home glucose monitor. Hypoglycemia is common in lupus, as is asthma, the joint pains and stiffness, tendonitis, and marked response to Prednisone. The rheum. should hear all of this, but I would write down a concise list of all symptoms and diagnoses over the years as a 5 page narrative will be overload. The tripping and loss of coordination could be B12 deficiency, also common in lupus, and that can be tested on a blood test as well. You are heading in the right direction seeing a rheum. Hope you get answers directly and soon so you can start getting this treated. You can and should feel better with treatment, so have faith that things will get better! Let us know how your visit goes, please.

 
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Old 11-23-2012, 11:07 AM   #9
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Re: First trip to a rheumatologist - what do they need to know?

Just read your last post after my post. I would also consider adrenal insufficiency if nothing autoimmune turns up, or in addition to it. Lupus can also cause tachycardia (fast heart rate), anxiety/depression, bladder inflammation which acts like a UTI but there is no infection (called interstitial cystitis), and of course the severe exhaustion. Blood sugars are perfectly normal in people with hypoglycemia, except DURING an episode of symptoms. If your symptoms are relieved by food or drinks that contain sugar, it is pretty clear that is the problem. A hypoglycemia prevention diet can be very helpful, in addition to carrying snacks and/or glucose tablets (available OTC at pharmacies) with you at all times. The glucose tablets are chewable, tasty, and 2-3 of them will get blood sugar up quickly. I have this problem, and keep those tablets in purse at all times.

 
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Old 11-23-2012, 01:50 PM   #10
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Re: First trip to a rheumatologist - what do they need to know?

Hi. Just want to clarify something about degrees of urinary misery. There is something called "lupus cystitis". I think it's a lesser evil than Interstitial Cystitis, but nasty enough on its own. (I'm betting that was what I had, the lupus kind, because I improved so much once on Plaquenil. i.e., I didn't need IC-type bladder infusions, luckily.)

I had B-12 anemia, too. Once that cleared, I stopped tripping & swooning. (Well, mostly. There was that nasty fall in the drugstore parking lot, but that was the paving contractor's fault...honest. )

Yes, there's hope! I too think you have a good list. And I agree that to make it really POP, it's a good idea to strip it down to one page. Wishing you a very successful appointment, bye, Vee

 
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Old 11-23-2012, 03:13 PM   #11
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Re: First trip to a rheumatologist - what do they need to know?

I'll try and condense it some more. It didn't look so long when I was typing it in my diary (where I do my 'thinking on paper'... if I'd ever had a rash, or fevers more often, I'd be asking if I had lupus, but they're pretty key symptoms and I'm missing them. My normal body temperature is low, and my dermatitis is usually smaller than the palm of my hand, and I've never had anything show up on my face except pimples.
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Old 11-23-2012, 06:25 PM   #12
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Re: First trip to a rheumatologist - what do they need to know?

Hi. Just want to say that when a list says "4 of the 11", you don't have to meet the rash criteria. You could meet enough others, is my point.

I hope you don't have lupus. If you do, I hope you find that out and get treatment. If you don't, I hope you figure out what you DO have and get treatment for that. In short, here's to better days ahead! Thinking of you, Vee

 
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Old 11-28-2012, 07:19 AM   #13
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Re: First trip to a rheumatologist - what do they need to know?

Getting soooo nervous now! I sorted my symptom list out into four categories - urinary, musclo-skeletal (the longest list), hormonal, and 'I don't know what the heck that is'. I really hope this guy doesn't think I'm wasting his time or making mountains out of molehills. I have an utter dread of wasting people's time and looking like a hypochondriac. DH has psoriatic arthritis and we were both horribly miserable over the weekend, and fine now. I had a GREAT session at physical therapy yesterday, and I even went shopping afterwards. On Sunday I couldn't make it around three aisles of the grocery store. I noticed one more weird thing this week - I can't stand to sit in the sun even if the temperature is low. I've never been a sun-seeker, but waiting at the bus stop felt like I was being broiled alive.
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Old 11-28-2012, 08:44 AM   #14
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Re: First trip to a rheumatologist - what do they need to know?

Try to be confident, in both tone & body language.

Most everything I'd told umpteen doctors over many years had been greeted with eye-rolling, profanity, snark, condescension, even that stone-cold stare you see in old westerns. (That sort of behavior from doctors seems to be A-OK where I live, possibly mandatory!) Then those VERY SAME THINGS made total sense to my 2nd rheumatologist. Sure, I went in with great trepidation---like you, I always did, too---but I'd have gotten nowhere had I not kept trying. So hang in there, we're rooting for you. Bye, Vee

 
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Old 11-28-2012, 09:02 AM   #15
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Re: First trip to a rheumatologist - what do they need to know?

I would be sure to add that last symptom to your list. Sometimes sun intolerance is the buzz word that makes them take note-like when Vee developed the sun exposure rash, she finally got diagnosed! Good luck with your appointment. Just a suggestion- a friend of mine was horribly sick for over a year, but she had the habit of hiding her nervousness behind giggling. So every time she went to the Dr she giggled through her long list of serious symptoms, and they didn't take her seriously because she seemed too happy. I make a habit of not looking too good (dressed up with makeup and jewelry) and keeping my affect appropriate to my level of illness, so my verbal and non-verbal cues match up. This is good for any patient to keep in mind, but especially those of us with long lists of chronic complaints.

 
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