She did recommend I wear the CT braces at night so I've done that the last 3 nights but so far haven't noticed any change in the morning finger swelling and stiffness. I did read that CT can often be a symptom of another underlying problem rather than a diagnosis in itself for hand problems.
No rash that I know of except the little red bumps on my upper arms and thighs which I believe is http://www.mayoclinic.com/health/keratosis-pilaris/DS00769
I do have very low-grade fevers sometimes. My temp naturally runs about 97.5 so it never shows as a "fever" since its not always above 98.6
I know the RH clinic at a nearby hospital requires doctor referral. I don't know about the other ones listed on my insurance but they are a 2 hour drive each way.
I am definitely going to insist on a referral though when I go back in a month. If not, I will find another doctor who will.
Stick to your guns. As I said Rheumys look for all types of Arthritis & conditions that I am assuming PCP's would never even consider.
If your gut instincts tell you something is wrong then you need to follow that.
I'm amazed at how quickly Ive progressed. The thing is to diagnosis & treat before damage & pain progress.
The RA doctor will do much more blood work & tests as needed, or they should.
They should be going by your symptoms & continue looking at possibilities even if your BW comes back negative for RA.
The comment "this is all work related" would irritate me. As I assume you would know if that was the case. I'm sure you have days off.
Be sure to have all your symptoms & concerns documented.
Even if there is only swelling in say the hand of a finger that is enough for concern. Its not normal & my RA said I should have been sent to her when it first appeared. Now remember I was tested by my PCP & it would have been no more then a couple yrs before the swelling started.
Ive come across others testing negative for RA several times. You would not be the first, yet the symptoms & pain are enough for seeking out the opinion of an Rheumy.
I'll keep my eyes & ears open for you. As Ive been there, done that & its not fun. Not knowing & wondering can become as difficult as the pain & symptoms.
There is no reason with your symptoms, family history & progression to be denied a referral. Even the NP should know there is more then one condition & disease that can cause these things & they are not equipped to deal with this.
God bless & good luck, remember to keep us updated.
Sammy
Well I finally have an appointment set up with a rheumatologist for next week.
I saw the neuro on Monday and he did an emg and nerve conduction tests on my hands and arms. He said I didn't have carpal tunnel and nerves/muscles reacted normally to the shocks.
He said it seemed more rheumatological from what I told him of my issues. So when I left I called my doctor's office and demanded they refer me!
So I have an appointment set for next week. Going to go over my notes and try to summarize all my issues into a list. Otherwise I know I will forget things once I'm in there.
I have been reading your thread here since you first posted it rileygirl and am wondering if you made it to the rheumatologist? How did it go?
I'm in limboland also with 18 months of migratory joint/muscle pain along with fatigue and swollen fingers and I'm convinced it's some sort of inflammatory arthritis.
Sorry for the delay in answering. Have had some family emergencies come up recently.
I did just get to the doctor this past Wednesday. He drew samples to repeat the tests done by the regular doc as well as other tests. He also took x-rays of my hands. I am supposed to go back in 2 weeks.
I assume he may know more once the results are in, but he said he is looking at rheumatoid arthritis based on symptoms, x-rays and family history.
For now, he told me to stay on the diclofenac and tramadol and gave me 15 day regimen of prednisone tablets to take.
Rooting for you rileygirl. Your symptoms sound similar to mine and I am just your age as well *and* my symptoms started about the same time yours did. I was just diagnosed with seronegative RA last week on Monday. I have no inflammation showing up in my blood work. None what so ever, on any test. My rheumy has seen first hand though the swelling in a few fingers and a knee. My pain gets worse in both shoulders, both elbows, left wrist, several fingers and my left foot. She put me on prednisone 15mg a day for two weeks and I improved so much that that clinched the diagnosis for her. Plus my eye went haywire back in June with Iritis and some other stuff. So even though my bloods are telling one story my body is telling quite another. When you have swelling and your eye goes bonkers with inflammation it's obvious there is inflammation regardless of what the tests say and I'm so glad my rheumy saw things that way.
Oh and I have no morning stiffness! I thought for sure that would delay my diagnosis. I get stiffness in the middle of the night but by morning I'm not stiff, just very sore and beat up feeling.
With the right doctor (rheumy) you should be ok diagnosis wise. Some docs depend heavily on the results of blood work for diagnosis while others go by the patients medical history, current symptoms and take the blood work into account but are not dependent on it. You have a family history correct? I do not. That tells you something. If this doc doesn't help, find another. You are under no obligation to take one persons word as gospel.
I've been reading your thread with interest and would love to hear the outcome of your story. Please keep us posted.
Sorry for the delay. I haven't had regular internet access the last few weeks.
I went for my 2nd appointment last week. I improved a lot on the pred, then started with returning pain and stiffness in my fingers and knee pain when I started tapering off of them.
He is treating as seronegative RA. I have just started on sufasalazine along with the diclofenac and tramadol (and omeprazole). I am supposed to go back in 4 weeks to see how the sulfa is working.
Mine started insmaller joints and is now moving to larger ones too. Wed rate was slightly elevated and everything else was normal with the exception that I am slightly anemic. Waiting on RA and Lips panel to come back and a protein or lipids heart test or something like that. Not the normal lipids test. Will keep you all posted. Good luck and when I get these results back I will post the results.
Sorry for the delay. I haven't had regular internet access the last few weeks.
I went for my 2nd appointment last week. I improved a lot on the pred, then started with returning pain and stiffness in my fingers and knee pain when I started tapering off of them.
He is treating as seronegative RA. I have just started on sufasalazine along with the diclofenac and tramadol (and omeprazole). I am supposed to go back in 4 weeks to see how the sulfa is working.
Any experience with this drug?
My daughter took it for a couple of years for ulcerative colitis. We never had any problems with the sulfasalizine.
Rooting for you rileygirl. Your symptoms sound similar to mine and I am just your age as well *and* my symptoms started about the same time yours did. I was just diagnosed with seronegative RA last week on Monday. I have no inflammation showing up in my blood work. None what so ever, on any test. My rheumy has seen first hand though the swelling in a few fingers and a knee. My pain gets worse in both shoulders, both elbows, left wrist, several fingers and my left foot. She put me on prednisone 15mg a day for two weeks and I improved so much that that clinched the diagnosis for her. Plus my eye went haywire back in June with Iritis and some other stuff. So even though my bloods are telling one story my body is telling quite another. When you have swelling and your eye goes bonkers with inflammation it's obvious there is inflammation regardless of what the tests say and I'm so glad my rheumy saw things that way.
Oh and I have no morning stiffness! I thought for sure that would delay my diagnosis. I get stiffness in the middle of the night but by morning I'm not stiff, just very sore and beat up feeling.
With the right doctor (rheumy) you should be ok diagnosis wise. Some docs depend heavily on the results of blood work for diagnosis while others go by the patients medical history, current symptoms and take the blood work into account but are not dependent on it. You have a family history correct? I do not. That tells you something. If this doc doesn't help, find another. You are under no obligation to take one persons word as gospel.
I've been reading your thread with interest and would love to hear the outcome of your story. Please keep us posted.
I think the three of us are all headed down the same road. I am just worried my new doc relies on bloodwork.
I think the three of us are all headed down the same road. I am just worried my new doc relies on bloodwork.
Thankfully, mine did not.
Apparently I'm allergic to sulfa
Made me horribly nauseaus and sick and made me ache all over like I had the flu. Then after about the 8th day, the rash started! Called the doc and he had me stop taking it and called in another burst of prednisone for me to take.
I go back to see him on the 9th, so we'll see what he wants to try next. Going to check out the other threads now to catch up with you guys!
The following user gives a hug of support to rileygirl: mjd123 (05-14-2012)
I have just been diagnosed as crazy too. Frustrating to say the least. I just moved last year so all of the doctors here don't know me. My husband is thinking I need to maybe go see the doctor I have seen for years in Louisiana. I am sorry for you. I feel your pain quite literally.
