My doctor's appt, fibro, etc
#247982 - 02/22/06 08:07 PM
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lalala
Reged: 02/14/05
Posts: 2634
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Well, in addition, to the AWESOME pelvic exam and pap smear I had today (I'm being sarcastic, of course, but I took a lorazepam before the visit and it really helped me relax! I also wore colorful knee-hi socks and a sweater over my patient's gown so that helped me feel a bit more comfortable as well.), I also had SIX vials of blood taken from me. Not too bad.
My doctor said she wouldn't could give me a diagnosis of fibromylagia becuase there isn't a specific test for it and because it would require a diagnosis of exclusion. She said she felt she didn't know enough about it to give me those tests and come up with a diagnosis. She also wondered if it could be something else, like RA.
So she had me do bloodwork, set me up to see the rheumatologist on Tuesday, and gave me a prescription for 5 mg of amitryiptyline (Elavil) at bedtime to help me sleep and help with the pain. After I see the rheumatologist and go over the blood work with him, then I see my doctor to go over what the rheumy said. If they can't come up with anything, then they're sending me to a sleep medicine specialist.
I spent about an hour with my doctor today, and she really listened to me and let me read my list of symptoms and history of tests and diagnoses. I told her my worst fear was to hear that "It's all in your head." I said people, friends, family, and I know myself very well and I'm definitely not a hypochondriac and I'm definitely not getting anything out of being sick. She said that I'm a mystery, but that I seem to be doing all the right things when it comes to taking care of myself. She also said not to thank her until she and the specialists figure out what's wrong with me.
Here's what bloodwork was done (which I seem to be having done every two years):
Complete Blood Count
Sed Rate
Blood Chemistry
TIBC- This is a blood test that measures the total iron binding capacity (TIBC) as an indirect measure of transferrin. (medlineplus)
CPK - measures creatine phosphokinase an enzyme found predominantly in the heart, brain, and skeletal muscle...when the total CPK level is substantially elevated, it usually indicates injury or stress to one or more of these areas. (medlineplus)
TSH (thyroid)
RA Test (Every few years the docs think I have rheumatoid arthritis because I get pain and swelling in my hands, feet, and knees; however, last time, the RA factor test came back negative. We'll see how this one goes.)
I am so excited to see a rheumatologist! But what should I wear?
 Just kidding!
Thanks to all of you for being so supportive and encouraging me to advocate for myself. Whooo! I'm so glad this first step is over. I've been really depressed the past couple of weeks, missing a lot of work because I've been so fatigued and in so much pain. Now I feel like I have my doctor on my side and that's such a blessing! 
Edited by Maria! Maria! (02/23/06 09:34 AM)
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I'm so glad you've done this and even more glad that it went so well. I know you don't have answers yet but I think it's great your doctor really listened, was honest about her limitations, and is doing tests and referrals to get you on your way.
How clever of you to take lorazepam before your pelvic and pap! I had never thought of this, just always figured I had to grit my teeth and endure.
It's so interesting she gave you Elavil for sleep and pain. I hadn't heard of it being used for that, but I checked and there it was, right on MedicineNet - used for insomnia and chronic pain. You learn something new every day.
Good luck on Tuesday, please do let us know how it goes. Oh, and, what should you wear to see a rheumatologist? Something roomy, of course.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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TOO FUNNY! I have a pap test today and had my GI test yesterday.
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Well, sounds like you are on the right track!! I think the colorful knee high socks would have been fun!!!
The Ra may run a couple of more test and may take some x-rays as well. It is possible to have RA and not test positive for the antibody. Hopefully the Elavil will help with your sleep. If your sleep improves, hopefully your pain level will also! I know my fibro pain is getting better from sleeping better. It doesn't help with the RA but I'm on "drugs" and physical therapy for that.
Good luck and keep us posted!!
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Taking it one day at a time.....
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I was wondering about the RA factor and if it can be missed in a test. I had this blood test done six years ago, I think, and it came out negative. My grandmother and my father have RA, so I was wondering if that puts me at a higher risk as well.
It's good to hear that your fibro pain is getting better because you're getting better sleep. I hope the Elavil helps, too. I think it might take a couple of weeks to work, though.
Thanks for your support! 
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Wow, you're getting all the fun tests done in one week!  Good luck at your pap test. I hope it goes by quickly. One of my doctors used to post a "Where's Waldo?" poster on her ceiling, so she would have her patients try to find him while she did the exam. 
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Thanks so much for your support, Sand! Yes, I was impressed with how honest my doctor was about her limitations. She said she also felt that it was good to get a "second set of eyes" to look over my symptoms.
One thing she asked me that I found interesting was if I've ever had psoriasis. I haven't. Now I wish I had asked her why. I wonder what she was thinking? Maybe she had a theory...
Quote:
Oh, and, what should you wear to see a rheumatologist? Something roomy, of course.
LOL!
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Ha! Must be the season for gyno exams, I had mine yesterday as well!
Your doctor seems to be handling the fibro diagnosis for you well. I think I had most of those tests run as well at some point, and Michelle is right, you can have RA even with a negative blood test. I would make sure they check your B12 levels as well, and maybe other thyroid tests if possible. TSH is the standard, but my hypothyroidism was not caught by two different doctors with just a TSH, since mine was on the high side of normal. My fibro doctor also tested my T3, T4, reverse T3, and thyroid antibodies which is how my hypothyroidism was found. Both the B12 levels and the thyroid stuff can contribute to fatigue problems, and the thyroid issues can cause sensitivity to cold.
Best of luck, and good luck with the rheumy next week! Keep us updated!
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Melissa
Friendship is thicker than blood. ~Rent
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It sounds like your doctor is on top of things and is caring. I have never heard of a sleep medicine specialist, maybe that's who I need to see.
I hope you get a diagnosis from the rheumy so you can get some rest and pain relief.
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Christie
~Hoping and Praying for Sleep!~
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Thank you! I'm writing down what you wrote about the thyroid tests and B12 levels. That's great to know and I will definitely ask my doctor about these tests at my next appointment. Yep, in addition to the fatigue, I really get uncomfortable and feel even worse when it's cold. Excellent info, Melitami. Thanks again!
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Yep, your doctor should ask about other auto-immune diseases like asthma, psoriasis and excema to see if you already have some of them already. Melissa and I go to the same doctor, so they've run the same tests on me. I do get to find out if I have Lyme disease or not on Monday when I get my tests back! Very psyched to see that. Plus get an insight into my thyroid function, adrenal glands, T3, T4 and reverse T3 levels and .... (there were a lot of tests... $1850 in all!!). 
~nelly~
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I was just reading about RA the other day. It said something like 40% of people with RA will never test positive for the anti-body. They do believe that there is a genetic gene that can be passed down, so yes, if your parents have it your chances are greater. I also read that RA can be brought out or activated by a severe virus or a major hormonal shift, like giving birth or possibly fertility hormones.
I was diagnosed with Hep C in 2001. I was told I was going to get liver cancer and die very young.  Nice thing for a dr to tell you!  The treatment they offered at the time was really nasty, basically a years worth of chemo and with the particular geno-type I had, geno type 1, the drugs only had a 30%chance of killing it. So, I opted to do nothing and hope a better treatment came out. While I was going through all the fertility stuff, I saw a different infectious disease doctor because the fertility dr wanted the virus checked and come to find out, my body had destroyed it!! I actually was just rechecked for it again last week and I'm still negative for it! Its rare for a persons immune system to kill such a strong virus, less than 8% actually. Anyways, when a body's immune system is revved up enough to kill a virus like that, it sometimes stays in overdrive. Between that and the fertility meds and miscarriages, they believe thats what brought on the RA for me. My mom also has been recently diagnosed so I probably had the gene somewhere and the above factors activated it!
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Taking it one day at a time.....
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Yep, skin rashes and eczema (sp?) can be signs of auto immune disease. I've personally never had skin issues, other then some acne and stretch marks!! I've had SO many blood tests done in the last 2 years, I couldn't even begin to remember them all! I know I'm also waiting on a Lymes test that I took last week! Do your hands turn white when they are cold? Mine don't, infact I typically run hot but its another symptom of auto immune problems!
Fibro won't cause swelling but will cause fatigue and pain. Ra will cause swelling along with lots of pain also! I was amazed when the rheumy told me I had already lost 20% of the bone mass in several fingers and toes! RA pain also tends to be on both sides of your body, like if your right middle finger hurts, your left middle finger will hurt too! About the only thing on me that doesn't hurt yet are my elbows! 
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Taking it one day at a time.....
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Thanks, Tissy.  Yeah, I've never heard of a sleep medicine specialist either. I was told they deal not only with sleeping difficulties but waking problems as well. Interesting!
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Wow! That's great that your immune system was able kill such a strong virus! I'mk so glad you didn't have to go through all that treatmenht, which seemed risky to me. Since you have a super powerful immune system, do you notice that you get sick (colds, the Flu) left often?
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Congratulations on SPEAKING UP, on following through. I admire your doctor's honesty--it's not her area. I'm sure that it would take a little more expert investigation/data/feedback.
Don't give up. It's not in your head.
Kate.
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Ah, I see now about checking for other auto-immune diseases. That makes sense!
Make sure to keep us updated on your test results! $1850 is a lot, but it's worth it just to find out what's going on with your body. Just getting in to see a rheumatologist, the possibility that I might get some answers, has made me giddy.
Isn't that sad?
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Now that you mention it, Nelly--Maria's symptoms definitely fall into the auto-immune category. Seriously...it's not something to dismiss.
Kate.
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I had really bad acne for years, and I always have mysterious rashes which I assumed were from having sensitive skin following years of acne treatment (Accutane- ugh!). I did have a viral skin infection a few years ago, but I don't believe it had to do with an auto-immune disorder. My hands and feet are always like ice cubes, something my doctor commented on yesterday. I've never paid attention to any change in color.
I don't want to jump to conclusions or diagnosis myself, but I do get pains on both sides. And my middle fingers always hurt! I don't even use them that often. The same for my pinkies and the tops of my palms/bases of fingers, ankles, toes, and front part of my shoulders. Hm. I guess I'll have a lot to talk to the rheumy about!
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Yes, I think my doctor's really smart and not intimidated by "medical mysteries." I liked her right away. Most doctors who see my scar for the first time freak out and say, "What's that? What happened? Why do you have it?" and think there's still something wrong with my heart. But my current PCP, when she first saw my scar, she said, "That's nice! Can I touch it?"
I can't give up now! Thanks, Kate, for all your support!
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No, I totally get it!! I was willing to throw major bucks at this to get some real answers. My health is my first priorty this year and I'm going to go until the cash runs out!
This doctor is a specialist in fibro, and I've always tested in the "normal" ranges for all my blood tests (except for a little anemia back when I was eleven). The clinic does broad and narrow spectrum testing, meaning they will tell me where EXACTLY I fit in the normal ranges, IF I test as normal.
Their methodology is to get me in the "optimal" range. So if on a certain test the scale goes from 1 to 1000, and normal range is from 50 to 900, and I'm testing at 899, their approach is to get me in more of an optimal point on that scale.
Can't wait for the results!!!!! Hope they can do something with them. I'll post back everything for sure.
~nelly~
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It sure is a blessing to have a dood doctor in your corner! I'm happy for you! You deserve a kind, compassionate doctor to help you find your answers.
I hope you get to the bottom of this, Maria. You should be proud of yourself for helping yourself. It takes a lot of energy to go to these doctors and get the tests. But it's worth it if you can get some answers and really worth it if you get some relief!!!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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