Could use some advice!

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Meg13
New Member


Date Joined Mar 2013
Total Posts : 5
   Posted 3/14/2013 9:48 AM (GMT -6)   
Hi Guys!

I'm hoping maybe someone can give me some advice. I've been bouncing around from doctor to doctor over the last 9 months, with no real answers. I finally had two doctors who really started listening to me, and now they have referred me to a rheumatologist, who I am waiting to see.

Basically, I just want to make sure that I ask the doctor the "right" questions or ask to be tested for anything that might be relevant. Here's some info about me:

- 24 years old, recently married, hoping to feel better soon so we can start a family
- Diagnosed with raynaud's syndrome. I have been advised to avoid caffeine & avoid birth control pills.
- I've had horrible arm pain in the area of the ulnar nerve, dr's say there is nothing wrong with the nerve, not cubital tunnel or pinched anywhere.
- My upper arms, tricep area, aches.
- My forearms & elbows ache.
- Typical raynaud's symptoms in fingers & toes.
- Daily finger pain & tingling.
- My ankles ache daily.

My doctor has done quite a bit of testing on my arms (EMG & Nerve Conduction Studies) and I've done two rounds of physical therapy. So he thinks my symptoms are somehow related to the raynaud's or possibly some autoimmune disease (Lupus has been mentioned, which is why I'm posing here)

I've been tested for lyme disease, had the SedRate, ANA, C Reactive Protein, Rheumatoid Panel.. and nothing has shown up anywhere. I've been advised to ask about B12 deficiency and check my thyroid function.. but is there anything else I should ask my new doctor about? I'm getting SO fed up with no answers.

If anyone can offer advice at all.. thank you so much!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/14/2013 5:09 PM (GMT -6)   
If your doctor is depending totally on ANA test then you need to find a different doctor.
There is 11 indicators of Lupus. You just have to meet 4 of them. you can find them at Lupus.org.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Meg13
New Member


Date Joined Mar 2013
Total Posts : 5
   Posted 3/14/2013 7:12 PM (GMT -6)   
Thanks! I'll take a look at that website. My doctor just referred me to a rheumatologist since he felt like what's going on with me is outside his area of knowledge. So hopefully I'll see the new doctor soon and maybe get some answers.

manvish434
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/15/2013 12:52 AM (GMT -6)   
please need me some advice for this sites.i cannot review this sites.please help me

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/15/2013 7:08 AM (GMT -6)   
Here is the live link - www.lupus.org - does this help?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Meg13
New Member


Date Joined Mar 2013
Total Posts : 5
   Posted 3/15/2013 10:47 AM (GMT -6)   
Well I'm having my appointment next Thursday.. I'm glad I don't have to wait too long. One of the things I'm not understanding, is it possible to have an autoimmune disease with nothing showing up on the blood tests? I've also heard some people say that Raynaud's disease on it's own is an autoimmune disease, but then I've also heard the opposite.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/15/2013 10:57 AM (GMT -6)   
From what I've read and understand you can just have Raynaud's disease or you can have Raynaud's and something else.

My mother has MDS, RA, and Raynaud's.

I hope you can get some good answers with the Rheumy on Thursday.

(Sorry, I forgot to activate the link for you last night)
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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