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tiredredhead
Regular Member


Date Joined Nov 2006
Total Posts : 109
   Posted 9/20/2017 4:13 PM (GMT -7)   
I am new to this board, but not to healingwell. I'm on a long journey to find a diagnosis at the moment. First, my primary care thought I has RA or Lupus, or Lyme. All those tests came back normal. Then he said he really thinks it is MS. Had MRIs. Found the damage to my lumbar and cervical spine had degenerated even furter. Found white matter brain disease that is usually only found in elderly. But no lesions.

My neurologist was very unhelpful and my PCP decided to send me to a new one. That is in a month. I asked to go to a rheumatologist since I have joint pain and spasticity in my muscles.

I'm going through questions with the rheumatologist and she is looking at me and suddenly stops talking and picks up my hands and asks how long have they been drawn up with swollen knuckles. I told her quite a while but everyone told me it was nerve damage from cervical stenosis and bone spurs. She found out I have swelling in other joints and that my hands ache and stiffen and its really bad in the AM. She says she thinks it's RA.

I feel like I have run around some kind of medical wheel in a complete circle. She took a copious amount of blood and sent me for xrays of hands and elbows. Apparently they do more "in depth" bloodwork than pcp. Not sure what that means.

Thoughts anyone?
Sarah

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 9/21/2017 10:50 AM (GMT -7)   
Sarah, if you will go to the MayoClinic.com & type in RA, their site gives info from getting dx'd to treatment. I use websites like the Mayo or John Hopkins because their information is correct. There is a ton of inaccurate stuff on the web. The x-rays are to look for possible joint damage, the blood work is testing several different factors associated with RA to see if you test high or low. No, these tests are not normally ordered by a PCP. The Mayo site will tell you all about this.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Indu
New Member


Date Joined Aug 2017
Total Posts : 18
   Posted 9/21/2017 4:58 PM (GMT -7)   
Hi Sarah,

I'm still learning more about RA - one of the newer tests that doctors use for RA diagnosis is called Anti-cyclic citrullinated peptide (anti-CCP). This test is based on blood work - it is used in conjunction with Xrays and physical symptoms for diagnosis i.e. a positive Anti-CCP result is not the sole indicator of RA.

Your doctor may do that test too for enabling diagnosis (my PCP did before sending me to the Rheumatologist). That is part of in-depth blood work.

I know RA is quite frustrating - from all the blood work, X-rays, to tests and not to mention, all the pain and joint swelling.

Hang in there, hope you find relief soon.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2472
   Posted 10/9/2017 7:51 PM (GMT -7)   
Hey Sarah
I'm seronegative RA
It's very frustrating
Especially after a horrific onset I have become visually OK for the most part and God Almighty yes- instead of being bed ridden I am high functioning.
It's a blessing but a curse as well. I am able to tolerate pain and adapt my movements thatcause pain but now my disease has become invisible to all but me who lives in this body.
Bottom line- blood work doesn't always tell the story
All my best

tiredredhead
Regular Member


Date Joined Nov 2006
Total Posts : 109
   Posted 10/18/2017 12:57 PM (GMT -7)   
Thanks everyone! I’m happy and upset at the same time. I have been officially dx’ed with Sero negative RA. I do not have the rheumatoid antibodies but she said the bloodwork showed high amounts of inflammation in my body. Not sure what the technical name of that test result is. She said based on my symptom history it ‘may’ be a quick progressing RA. Six months ago I could crochet a hat in two hours. Now I have to ice my hand after 2 or 3 rows and have been working on hat for two weeks.

I start methotrexate on Saturday. 4 pills once a week. Go back in 2 months for bloodwork and recheck. Not sure how I feel about the methotrexate. Sounds like not much fun.

Sarah
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