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Scared/Frustrated/Lots More Questions
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Tami46 posted:
I went to the Rheumatologist yesterday for the first time, a little disappointed, and just filled with alot more questions. He is from India so he was very hard to understand, so I had to ask him to repeat himself a number of times. He told me that just because my RA came back positive doesn't mean that I have Rheumatoid arthritis, that it can be positive in anyone, is this true? He said the pain I have in my hips and my ankles is bursitis, the burning in my wrists, hands and feet he doesn't know what it is, so I had 18 tubes of blood taken from me. Told me the only thing I can take right now is tylenol and he will see me in two weeks. I am in so much pain in my hands today, burning in my wrists and fingers, I am just in tears! I am so exhausted I can barely function today. Is this the normal way that things go when you see the rheumatologist for the first time?

Any suggestions, input on this would be greatly appreciated. I am feeling like I am making this up in my head now, that is the way he made me feel.
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lcover responded:
Hi Tami,

I'm sorry that you are going through this experience. Being diagnosed can be frustrating and frightening at first.

I felt the same way...they took a bunch of blood samples and I had so many questions, concerns, etc. I tried to find as much information as I could and I made a list of questions for the doctor.

My first flare the doctor said it was bursitis and then later the other flares were diagnosed as tendonitis. My GP finally did the blood tests and my results were conclusive. The rheumatologist knew right away from my results and didn't need to do more testing. I have learned that RA can be very tough to diagnose and you will see information about how the RA comes positive, but doesn't mean you have it, etc.

Don't be afraid to get a second opinion if you need too. You can get copies of your records.

In the meanwhile, hang in there! Don't worry, it will get better!! It just takes time.

Take care,
LC
 
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HeatherSR responded:
Hi Tami46,

Getting diagnosed is very scary initially. Hopefully you get more confirmation one way or the other soon. I find ibuprofen to be the best over the counter pain reliever, as it also reduced swelling. You might also consider taking iron supplements. If you do not get answers soon, do not hesitate to go to a different doctor and get a second opinion. The sooner you know what is going on with your body, the sooner you can get treatment, and will eventually feel like you have your life back again.

Good Luck!
 
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speet responded:
I was told by a couple of doctors that it was virtually everything else but RA. I am not a doctor, but your symptoms sound like mine.

I keep searching for a great Rhuematologist. One that was aggressive and listens. I am lucky that I have found one.

I would suggest getting another opinion:) Hang in there and listen to your gut.
 
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jessejames99 replied to speet's response:
a simple blood test will show if it is ra.
 
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LadyNerilka responded:
My blood work showed negative for RA for the first 3 years though my symptoms said otherwise. It is not known what causes RA so diagnosing it is tricky. Find a doctor that you can understand and will listen to you, and answer your questions. My doctor was a jerk at first but once we got on the same page, we now get along fine. Your symptoms sound very similar to mine, but symptoms very from person to person. Take vitamin D supplements, they might take time to help but get that started now. Take any natural anti-inflammatory you can. Turmeric and ginger have great anti-inflammatory properties. Try putting 1/2 tsp of each in a cup of hot tea with some truvia/stevia; I suggest green tea for its anti-inflam. properties as well. Preservative free or fresh pineapple, papaya, blueberries (just to name a few) can help. Some people find that taking supplements/multi-vit that contain magnesium, manganese, and potassium help. I cut out breads, noodles, potatoes, and most sugars (aside from whats naturally in fruits) and started feeling better within 2 days. I can eat these sometimes, like for a bbq or cake for my nieces birthday, but lessening those has really helped. For some just going gluten free is what helped best.
I know this post is kinda scatter-brained but I'm too lazy to try to organize it better All the info is overwhelming at first, you aren't alone in that. At first I did so much research I couldn't remember what was good and what was bad, so I limited my research to a certain amount of time a day/week and took notes on the comp so I can do ctrl F to find what I need.
Definitely remember everyone is different, from symptoms to treatment. There is no 'normal'.You can even keep a log of what you eat and how you feel everyday to see if there are patterns as well.
Don't push yourself. It is ok to take breaks and rest, often, otherwise you could pay for it for days to come.
I wish you the best of luck!


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