Becki's RA Journey... my story p1

By becki Friday, April 25, 2008

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I was initially diagnosed with RA last month (3/27) after seeing the head of the Rheumatology department at Cleveland Clinic Fl. Prior to seeing him I saw doctor after doctor trying to figure out what was wrong with me. I have had bad wrist pain on my right hand for months but around early to mid Feb it got so bad I couldn't even move my hand. I had also been experiencing extreme fatigue and just feeling I was "catching" something but never really did. This included dizziness, nausea, headaches, mild fever, fatigue, and chest pains.

In Feb I went to a hand specialist who sent me to do testing for carpel tunnel syndrome. I got an MRI, and saw a Neurologist. I then saw an Internal medicine/Rheumatologist who was the first to run preliminary tests for RA. I also wound up at the ER twice that month. The first time because of the intense pain on my arm and the second time I was admitted at the hospital over night due extreme fatigue and chest pain. I left the hospital both times with no diagnosis. The cardiologist that saw me the second time, due to the chest pains, said my heart was perfect. I had no elevated ANA in my blood nor Rheumatoid factors or any other signs of inflammation in the blood.

My MRI of the wrist showed severe tendonitis and bursitis and I was diagnosed with mild carpal tunnel syndrome on both arms. I got blood work after blood work done since mid Feb and towards the end of March the first Rheumatologist I saw told me I didn't have absolutely anything.I was devastated of course since he told me this even though I had been sick for over a month in and out of the hospital, had pain in all of my joints, trouble walking and even mild activity would give me extreme fatigue and left me feeling miserable. He encouraged me to get a second opinion yet proceeded to determine I had nothing other than fibromyalgia and prescribed me Lyrica. He also had the nerve to tell me that I should talk to my Psychiatrist and see if I was suffering with depression or anxiety implying it may have been causing my symptoms.

After I left his office that day I was very upset and felt under minded, as if I was making up my symptoms. How could he even dare to hint I might have some type of somatoform disorder? Later on that week I was able to see the specialist in Rheumatology at Cleveland Clinic. After the doctor reviewed all my prior tests and did a physical evaluation, he determined that I had all the symptoms of RA. He said that even though it didn't show in the blood, I could be in the early stages of the disease.

I had had an arthroscopic procedure on my right knee in '05 due to severe inflammation and loss of range of motion. I mentioned it to the doc and he said that it could have most likely have been RA that after the surgery may have gone into remission. He asked me to bring him the pathology results from the procedure and get some more blood work as well as an X-ray of the pelvis. I saw him two weeks ago and all of the blood work came back negative for the Rheumatoid factor. The pathology taken from the tissue that was removed from my right knee during the arthroscopic procedure in '05 showed to be synnovitis and the doc said that was consistent with RA.

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Comments (6) | Add comment

Hollybgroovin, Health Guide

4/25/08 9:51am

Reading your story breaks my heart! It sound way too familiar! My fight for a diagnosis and some relief took years. Years of me knowing something was wrong. I kept telling everybody that something was wrong, and all I got were doctors telling me nothing was wrong, until I got so bad that I couldn't walk. It's so frusterating isn't it, when you can't get anyone to listen or to take you seriously? But you know your body the best, and when you feel something is wrong it usually is. Keep up your fight for a diagnosis. If I hadn't kept going I would be in a wheelchair right now. If you don't feel this rheumatologist is taking you seriously, then find another one. I know that it's hard, and so much work on your part, but when you finally find someone who will listen and take you seriously they may be the one to give you your life back as well! I am including a link to my introduction blog. I feel that we have had quite a few of the same experiences in our journey for a diagnosis and for someone to help us and take us seriously.

http://www.healthcentral.com/rheumatoid-arthritis/c/9937/20686/mom

Don't give up, even when it's hard to keep going. Feel free to vent, ask questions, or just cry out words. We are all here for you. Good luck, and best wishes!

becki

4/25/08 10:09am

Thank you so much for that refreshing message! I really appreciate your responce. I will deffinately read your blogs and checking back with you!

-becki

AmyAria

5/ 7/08 3:06pm

Tell me more about this chest pain please. I too have had this as a reoccuring issue for years, even before any obvious RA symptoms. Also had the ER admissions with Cardiologists just shaking their heads and my kids sitting there looking scared. Best explanation so far is "asthma" which I do have, but sharp sudden pain doesn't sound like any common symptom of asthma I've ever heard. My Rheumy doesn't seem to think much of it or at least isn't sure what to make of it. Is this a possible RA thing? What did you find out about it?

pumpkin45

6/16/08 3:25pm

Hi, Your story sounds exactly like mine. It took a year before I was diagnosed with RA after a simple blood test. I was also told to see someone in psychiatry as it might be "in my head". I was so angry that I walked out of the doctors office and never went back. Now, 15 years later I am coping with the disease to the best of my ability. I work at the Cleveland Clinic in Ohio and have excellent care thank goodness. Hang in there.

Anonymous

1/25/10 12:44pm

You might want to get tested for Lyme disease.

Cali4lyfe

12/ 5/10 11:18pm

....and I couldn't believe what you had to go through before getting accurately diagnosed with Rheumatory Arthritis. It just seemed retarded how the first Rheumatologist you saw didn't find any physical symptoms of RA in you. But you were obviously in pain, especially for months. It might be that he was so hesitant to diagnose you with RA based only on the fact that you were experiencing severe pain in your joints. However, I don't it was right for him to refer you to see a psychiatrist just because he was too incompetent to realize that you did have RA. You were in pain (HINT HINT!), obviously something was wrong. Anyway, I'm really sorry that you had to go through that. I think your story helps stress that it's always good to get a second opinion or more in order to re-assure yourself.

I've been in a similar kind of situation before and it sucks. I recently went to a family doctor to get a yearly check up. I had them perform blood tests and x-rays on every section of my body. After the results arrived, I spoke with the physician (by the way, this was first time I've seen him and therefore, he has had no documents on my previous health history) and he said that I was in perfect shape, but I had no signs of Rheumatory Arthritis, ADHD or any kind of learning disability. I immediately went into disbelief and didn't want to hear his professional opinion. He had no idea what he was saying. How can you make these claims just by reading results from simple blood tests and also not see from my x-rays that there were significant deviations between and around the space of my joints????? I told him that when I was in Junior High (6th grade) that I actually went to see an RA specialist at Stanford Medical Hospital/Clinic and he automatically diagnosed me with Adolescent Rheumatory Arthritis. I was completely certain that the diagnosis made by the RA specialist at Stanford was so sufficient, that he even had 4 to 5 other doctors and even medical students in their residency evaluate my case. FYI, it was a little uncomfortable having a room full of people examining me like I was some kind of lab rat or scientific experiment.... Before I saw the specialists at Stanford, even my private physician did find symptoms for RA in my MRI images and was actually the one who advised me to see the RA specialist at Stanford. So, even after giving him a substantial explanation on why his findings were wrong, he said that "Rheumatory Arthritis is a disease that is only prominent in people of old age and it also stays with you for your entire life." After hearing this, I didn't feel like he deserved a respectable response. So I literally said, "Well, Okay." Yeah, I know it's common for people of old age to get Rheumatory Arthritis but they're not the only ones that can get diagnosed with it. It is because there are so many diagnosis of RA.

You're RA condition seems to be more severe than mine, which is what influenced me to share some of my experiences with you.

Anyway, I made frequent visits to the doctor every month, and I stayed on the medication for about a year but stopped it. The medicine - pain kilers and pills for inflammation didn't seem worth taking because I kept forgetting to take it every other day. My doctors were like, "if you stop taking just one dose in the morning your treatment starts over again." I didn't feel like putting my liver through that kind of risk, so I went off the medication and haven't taken it since. It was tough for me to get out of bed every morning, especially when it was cold. But it didn't stop from playing competitive sports throughout high school. Since I did stop using them, it did cause me to be more restless during class and after sports.

I heard from an expert source that people diagnosed with Arthritis are better living in drier climates, such as Southern California and Arizona. It appeared to make a lot of sense because a lot older people (who are usually at risk of osteoporosis and having arthritis) decide to spend their retirement in these particular places, especially in Arizona.

By knowing this, I decided to spend the next 3.5 years in Arizona for college. It was probably one of the best choices that I've made in my life. I definitely noticed a difference within those 4 years. I seemed more relaxed, and less agravated most of the time. I mean besides the fact that Arizona gets almost 300 days of sun or hot weather, I just gained a better perspective on life. However, I'm no longer in AZ because I decided to find my intellectual pursuits elsewhere.

I decided to go to outside of AZ, and I came back to being a little restless. But again, I really try not to let ruin my day. And like you, I also take Adderall, bu mainly for "ADHD-PI" purposes.

Anyway, I hope my personal experience and input has helped you in some way. I also understand that its been around 2 years since you posted your story, but I hope your doing well.

Becki's RA Journey... my story p1

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