Sjogren's lymph node swelling

I have Sjogren's, Raynaud's and either Lupus or Fibro..Last Feb I was diagnosed with Sjogren's after a high titer.  Recently I was suppose to be tested for Scleroderma through a ANA IFA  and SCL-70. The NP I see is my medical care giver, ordered the ANA Direct and it came up negative. I know this can be common in this test. But she did not order the SCL-70 test as the rheumy I consulted with had suggested she do so, she had put this in her notes last summer and my records are shared electronically between them with my permission. Apparently the Nurse practitioner is not following my case. Something I guessed on my last 3 visits. I requested my records and received most but not all as the rheumys records were not included but records from a Gastro doc were.
Now to get on with my question..........I have swollen lymph nodes, the ones on my groin and behind my knees have bothered me for over a year and I let the NP know about this on almost every visit with her. Nothing in my records whats so ever even suggests this. So now my lymph nodes in my armpit and on my chest/rib cage are giving me pain, the one behind my knee is getting very intense, the ones in my groin are both swollen and painful, more often it would be one or the other. First time I had so many of them give me trouble at the same time. When should I be concerned? I have been trying to find an Internist to take over my medical care but having the luck to find one who is accepting new patients and Medicare has not happened for me. I also have moderate to severe neck pain , getting worse if I lay down, is this a gland getting inflamed? I know how these autoimmune diseases have numerous symptoms but I am unsure about lymph nodes problems and having others urging me to have them checked. Can you put my worries to rest?

[lupiemomof2]

You do need to get them checked.I know often getting to see a specialist is hard especially with Medicare-call and ask them for a list of docs that are taking patients in your area they should have a list-if you call all the docs and they arent contact medicare again let them know and see if they can assist you in getting in somewhere.I am not sure if you have medicare or not-If not and are self pay you may have an easier time as alot of docs arent accepting it.

Is it possible for you to return to the rheumy for a followup and to let them  know that you are looking for a new doc as the testing they recommended was not done?They should be able to order the test themselves instead of sending to another to complete.

Call them or a doc you have established and see if you can get in just to get it looked at and perhaps have them refer you somewhere and with their weight behind you you may get in quicker.

Sjogrens is notorious for gland issues and you could have parotid,submandibular or sublingual issues.If there is an infection it could be causing the others to swell as lymph nodes are basically the bodies trash cans and when one fills up it overflows to another and another and so on.So yes I would highly suggest you get them checked as it is most likely a signal that something is going on-and they are PAINFUL too!

Start calling and get seen-if all else fails go the hosp and let them know you cant get in anywhere and are concerned and want to make sure it is not something serious-they have the ability to run any test needed-it might cost more but at least you should get some answers.

Much Luck

[badgenes]

I am on Medicare, applied at another doc a MD in Internal Medicine, they turned me down. The rheumy will not order any tests for me as the nurse practitioner is my primary. The rheumy told me to go back to the NP and have her order the correct test and look at my lymph nodes. I'm telling you the NP does NOT want me as a patient. I have learned more about my health from support groups then I have from this NP. This NP is not helping me at all I have no choice to keep her for now to get my prescriptions filled.  My next appointment with her is in 5 months. She does not help me but makes me feel like I am wasting her time, has not and will not refer me to an Internal Medicine doc even though she admits I need one. I am on SSDI only receiving less then $500 a month after my premium is paid to Medicare. Not much left over to live on let alone pay cash for my health care and going to the ER is out of the question, the cost would set me back for months. I have called MANY doctors only to be turned down over and over again. It seems the physicians in my area do not care and would rather see me suffer and I am. I feel like just giving up. The closest specialist are in LA and UTAH far from my home. I think most with my health issues are not being helped as there is no cure and they just throw medications that do nothing or do more harm then good unless you are so bad you are hospitalized. I give up! I am done! I was under the impression that I was asking an actual doctor questions. Thank you for your reply but it does not give me any answers. I am feeling that swollen lymph nodes are just another symptom I have to live with...........

[karajo]

I encourage you to call Medicare and let them know the problems you are having w/ your physician.  (I'm not sure that this is possible, because I am not on Medicare)  But perhaps you could change to another dr. who is taking Medicare.

I looked up swollen lymph nodes (lymphadenopathy) and there were several autoimmune disease that cause that:
Rheumatoid arthritis
Sjogren's
Systemic Lupus
(I see you do have Sjogren's)

Usually it is a sign of infection or trauma.  Is you white blood count up?  What kind of labs have they done?  I agree this needs to be seen about.  Please don't give up.  

Have you had fever w/ this?  Are you on Phenytoin (Dilantin)?  This can cause generalized lymphadenophathy.  

Is the rhemy still seeing you for the Sjogren's?  

Here is a start on the symptom checker here on MedHelp.
http://www.medhelp.org/symptomsearch?addterm=swollen+lymph+nodes
You can add symptoms to narrow down the possible cause of the swollen lymph nodes.

Also  http://www.medhelp.org/medical-information/show/1560/Sjogren-syndrome

With Sjogren's there is an increase risk of lymphoma according to the article above.  

Praying for you, ~Kara

[badgenes]

I do not know what my blood count is as the NP did NOT order the right tests. Medicare is not accurate on any of their info. The Drs I looked up say yes or no if they are accepting new patients and if they accept Medicare, its been wrong 75% of the time so no help there. The rheumy will only see me as a 'consult' after my 'primary refers' me. I am in limbo. I am going to a Lupus support group later in January and will ask the people in the group if their Drs are likely to accept me as a new patient. It's almost like I have the plague. I don't even need that much care, just someone who is competent and willing to run ANA labs every six months to keep on top of my issues. If a knowledgeable Internal Dr told me that my lymph nodes were ok after palpating( not sure if this is the right term) them I would feel better even if the swelling continued. Nothing like having symptoms that I don't understand and being dismissed if I bring them up when I have seen the NP, who is worthless! drs protect Drs just like attorneys protect each other. I am not out to get something on this NP, my only desire is to find a 'good' Dr and move on.
I recently found out by researching the internet that Sjogren's and Lupus patients can have lymph node issues that may or may not be serious. Thank you Karajo for including the links above .No fever no drugs. I am weak, fatigued and underweight but this is nothing new expect for maybe the most recent weight loss about 5 pounds.

[karajo]

I understand your frustration.....as well as the many others here on medhelp.  

God can change the scene.  I'm prayng for you.  
Kara

[badgenes]

Thanks for the support and the time you have given me. It's too bad Drs don't take us more seriously as we have to resort to going to support groups to find answers.
I would spend more time here on Medhelp but unfortunately this site is loaded with cookies and slows down my PC every time I come here so I may leave this site soon.