can't get a diagnosis

By paula Thursday, December 18, 2008

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i have been fighting pain for nearly seven months. it started out as major fatigue and then swelling of my ankles and wrists. i went to the doctors and they checked my blood work. everything came back fine. the pain kept getting worse to the point where i ended up in the er. blood work came back ok, chest xray was fine, and urine test negative. everything ok. pain kept getting worse. i started looking up on the internet the symptoms i was having because it was evident no doctor was going to help me since my blood work was coming back that i was in perfect health. the internet sites i found pointed to rheumatoid arthritis, in which i have EVERY symptom...all of them. so, i mentioned this to my doctor, who pretty much blew me off. which led to my second trip to the er. i just couldn't stand it anymore. i was in so much pain that i couldn't even go to work. my husband told the er doctor that if he could just treat the symptoms and give me some relief. so, the er doc gave me prednisone and vicaden. within two days i was feeling so much better. i could still feel some tinges of pain but nothing like it was. i was able to walk, sit down on a toilet and even wipe myself again. then the prednisone was gone...it was a pack...and by the first day after the pack was over the symptoms were back...and getting worse day after day. i ended up going to john's hopkins to the rheumatology dept. where i told them that my blood work isn't showing up anything. they did another round of blood work and put me on relefin. i recently got my results back from them. my blood work is all ok or negative not showing up any sign of athritis, ra, or not. what is showing up is a low level of vitamin d. my question is, the doc at john's hopkins even said that the blood work doesn't have to be positive for a person to have ra, so why won't anyone diagnose me with me it? and if it is just a vitamin def could that be causing the exact same symptoms as ra? someone please help me.

Comments (4) | Add comment

StarHill13

12/21/08 12:52pm

I do have an RA diagnosis; however, I also have a vitamin D deficiency. I've read that sometimes RA doesn't always show up in the bloodwork, but I wonder, how common is the vitamin D thing in RA? Does anyone else here have that as a symptom? It's not listed in any of the info. I've read, but I've come across a couple other people already that have said they have a deficiency too. Maybe the RA expert on this site can answer that?

My GP says that a vitamin D deficiency can cause muscle cramps, but I don't know anything about joint swelling related to it. I had muscle cramps in my legs last year, and once I started taking the vitamin D prescription they went away.

I wish you all the best, and hope you get a diagnosis soon. There are so many disorders that can cause the same symptoms, but I can see why you think it may be RA; your symptoms do sound like it. Only a doctor can tell you, but keep looking for answers and asking questions! Take care.

Carol

12/22/08 12:51pm

The girl that I know to call her self the Vitamin D Queen is Nikki Lynn on this other forum. http://community.arthritis.org/forums/Forum1831-1.aspx I am sure she has all the info you need.

kbabb76

1/ 6/09 8:50pm

When I was 21 I finally went to see a rheumatologist and had a panel of blood work done, it all came up negative yet I couldn't open up my hands barely walk and was infammed throughout my joints. My doctor diagnosed me with R.A. I had all the symptons, he told me that R.A. sometimes will not appear in your blood for up to 10 years. I recently had some blood work done and it now shows positive for R.A.

Please read my story below, it kills me to hear so many people in pain that I have to share this with you. Good Luck and God Bless!

vitamins that work when taken together daily

When I was 21 I was diagnosed with R.A. I am now 32 and my R.A. was extremly painful and crippling, I had a hard time getting out of bed, walking and even lifting, I came to accept my illness and live inside an old womens body. I had tried all kinds of meds, myths ect. Nothing really made me feel good because if it wasn't the pain from R.A. it was the pain the meds made me feel.

Through the years my mom would order things for me to try and one day she called and said "I have it" "the cure" I listened and wrote down what she had told me and put it on the back burner. A few months later I was in extreme pain and my mom asked if I was taking what she had told me, of course no. I couldn't find it with in to go out and buy more stuff that wouldn't work.

Well I finally did and it has been a blessing, I finally feel like I should and my inflammation doesn't exist. For the first time in at least 3 years I can raise my arms above my head.

This is what I take:

1-Daily Multi Vitamin

1-Fish Oil Capsule

3-Vitamin C @ 500mg

5-Vitamin E

1-Glucosamine/Chondroitin Sulfate

1-MSM

1-Garlic pill

I take this daily at the same time, I tried to take it all in the morning but night time is better because you will burp fish oil and taste garlic. It works for me and has others. Good luck!

Gayla

1/20/09 8:21am

I went through the same thing, when my sympthoms started. I had no swelling, I was 29yrs.old, & to my new young practical male doctor, I was in his words;"not in as much pain as other patients he had,who were sicker."

I knew I wasn't nuts, & I didn't want attention, & I had 2 children & a husband to care for. He tried the ansaids, & Depo-medral shots.

Didn't help me. The pain was so bad in my wrists that I couldn't open doors, brush my hair, or teeth, couldn't turn over in the bed, couldn't get out of my water bed, needed help to get clothes on & off, & so on......

My husband was getting worried, with no diagnosis, & no medication that helped the pain.

The doctor finally sent me to a Rheumatologist in the next town. That was an exsperience. He asked some questions, & did all kinds of blood work, even RA, & Lupus tests.

Well, nothing showed up, ofcorse, but he did say sometimes the pain shows up before outword signs. He started me on other ansaids, which didn't help. So my mother called her doctor in Houston to see if she could get me in. This is like 8 mths. later. Still no outward signs.

He asked a lot of questions, & wanted to know what I had been around & been doing that year. I mentioned video games, out in the sun, & got a rash on my face & arms. I mentioned the dentist, & getting amalgumate fillings. He was interested in this, & wanted me to confirm with my dentist, (which his receptionist would say he was busy & she didn't know). He never would say, so I quit that dentist, little did I know, they all use it. A woman got all her teeth pulled & her RA went away.

The two years before, I had a total hysterectomy, because of endometriosis, & a harmone implant was put just below my navel, & was suppose to last a year. I could not tell doctor the name of it, & it was taken off the market by the government. I never knew why. The gynecologist put me on a high dose harmone pill, Estrovos 50mg.1x a day. The Houston doctor said, that was too high a dose, so he put me on Premarin.

He sent me home, with prescriptions for high dose of Motrin, & to take Ecotrin in between.

He called in a couple of days with the results of my X-rays & blood work. It was divastating to hear I had RA. The X-rays didn't show any change or damage yet. I told him the Motrin didn't help & my legs felt like some one was hitting them with rubber bands. He said what caused that, but it wasn't a side effect, & took me off of it, & told me to come back, a 12 hour drive.

Got there, & he wanted to treat this aggressivley & he wanted to start me on Prednisone, .5mgs, 6 a day for a week & work down to a low dose. The draw back was, my face would start looking round & puffy. At that time I said, I don't care, I just want the pain to stop.

Then he had the nurse give me a Solganol shot, commanly called "Gold Shots", & showed my husband how to give it, when we got home.

I got my Prednisone that evening, after we got home, & shortly after, NO PAIN ! He said I was allergic to wheat, because of a colon test, & to stay off wheat as much as possible.

I started craving breads, pastries, & stuff, of which I never had that problem before. I started gaining wieght. The Prednisone, has that side effect, so I had to remind myself, why I was craving foods.

I started using a doctor here after I gave myself a heart attack. I had mowed the acre front of our yard for several hours, & I was so hot when I finished, I drank a lot of ice water, got in front of the airconditioner, & then took a cold shower. NEVER do this !! I put my body in shock. When my left elbow started hurting & my chin, I thought it was because I over did the mowing. I waited till the next day, & told my mother about the pain.

She called the Houston doctor,& he went by the sympthoms, & I didn't say I mowed & froze myself, because, I was young & I didn't want my parents to know that, because they would get mad that I was doing it, & not my husband or son.

So I ended up in E.R. & later when they thought I could eat, I went into cardiac arrest.

God wasn't through with me.

So as the years & months passed, I started noticing swelt, sort of crooked fingers. Some of that was my fault. I would lift heavy things & go on with my life, but I didn't understand why I had to becareful doing things, but now I know.

After time, it distroys your joints, faster

I'm 56, & had this 27 years. The rash I had on my face when I saw the Houston doctor, he said was a typical butterfly look across the cheeks & nose, & it is typical of Lupus-erythematosis, of the skin. It could go into my organs, but so far it

hasn't. To cover my reddish cheeks, I use a cover up by Derma Blend. Don't give up. To stop the pain & any swelling is major to do first, & do not over do things.

I am now on Prednisone, Enbrel Shots, Methotrexate, (I can't take the 6 tabs a week, it's too much) & Generic Diflunisal, Gluclosimine & Condroitin supplements, calcium,vitamens, & with out Prednisone, I couldn't make it. I liked the Vioxx, but can't get it now. I tired the Biaxin, but didn't help & gave me heart attack sympthoms, so the doctor took me off it.

I pray for you all & glad I found this sight, by accident. Your firends & family may need a print out on what different RA patients go through, to understand, & they need to read up on it.

God bless you each & your families.

Gayla

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