Anyone live in Chicago?

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pink blobs
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Date Joined Jan 2011
Total Posts : 54
   Posted 3/15/2011 4:56 PM (GMT -6)   
Because I need to see someone who cares about listening to someone with Lupus symptoms.

couchtater
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Date Joined Jul 2009
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   Posted 3/15/2011 6:23 PM (GMT -6)   
We're here for you.
((((((((((((((((gentle hugs))))))))))))))))))))
Joy

pink blobs
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Date Joined Jan 2011
Total Posts : 54
   Posted 3/15/2011 9:13 PM (GMT -6)   
couchtater said...
We're here for you.
((((((((((((((((gentle hugs))))))))))))))))))))


Oh thanks! That makes me feel better. I was discouraged by the rheumy I saw recently, he was old and claimed he couldn't see a facial even though my other doctors did. I read that he was more of a RA specialist, not so much of an SLE specialist. I think I'll see a new one that does. I was just wondering if there was a remote chance anyone one here was from Chicago and had a recommendation.

My gp diagnosed me with ankylosing spondilitis, and sarcoidosis two weeks ago, but my pulmonologist said today that didn't have sarcoid granulomas, just one unidentifiable one that was probably fungal but not sarcoidosis.

I have been having Lupus like symptoms for over 6 months. Today my face was so red and puffy, with red spots and raised areas near my eyes. My pulmonologist even commented on it. It goes cheek to cheek, over my nose and chin, even down my neck. I also have bluish toes and red/white fingers that change color according to hot or cold, easy bruising,back pain/pinching, joint pain/joint rashes, weird visual symptoms, myoclonic muscle jerks, chest tightness and slight hair loss when I shower.

I had a negative ANA back in september, but I think I might try again. What other tests should I have my next rheumy do? My gp was pretty sure of the AS in my spine, and suggested I had at least one autoimmune disease, but perhaps another. Rush University, the Chicago medical center/hospital, as many people saw and may remember on the TV drama ER, is a respected institution, but I feel that some of the docs there are good and others not so good. Some of the doctors don't tally all symptoms or refuse to do certain tests or do and not tell what they ruled out.

What tests most strongly confirm Lupus? Or what made your doctor conclude you did?

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 3/16/2011 4:18 PM (GMT -6)   
I'm not diagnosed yet. I'm waiting on results.
I suffer from a rash on my face, arms, and sometimes on my chest. I have joint pain, muscle pain, and fatigue. I have Degenerative Disk Disease.
Joy

pink blobs
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Date Joined Jan 2011
Total Posts : 54
   Posted 3/16/2011 5:47 PM (GMT -6)   
Well, we're both in the same boat there. I found a rhuematologist in Chicago that specializes in Lupus, so I'm going to make an appointment with her, maybe she will be able to my obvious face rash and treat my ankylosing spondylitis. Good luck to you on your results. Does your doctor think you might have Lupus?

Bsime
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Date Joined Apr 2006
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   Posted 3/17/2011 8:53 AM (GMT -6)   
Check links out for the criteria for lupus diagnosis. An experienced doc will look at your clinical symptoms and labs to reach a diagnosis.

http://www.lupusresearchinstitute.org/lupus/lupus_diagnosis

http://www.lupus.org/webmodules/webarticlesnet/templates/new_about.aspx?articleid=364&zoneid=2

There are a number of good rheumies in the Chicago area but I like the docs at Northwestern particularly if you are having difficulty getting a diagnosis. Also, there are several lupus support groups that meet regularly in Chicago and you can get advice from those of us who have been through it. I participate in the Naperville Lupus Support Group but there are others.

Bill

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 3/17/2011 6:48 PM (GMT -6)   
My doctor is torn between Lupus or allergic to myself. The latter is what I'm hoping for, it's an easier treatment.
Joy

pink blobs
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Date Joined Jan 2011
Total Posts : 54
   Posted 3/17/2011 7:46 PM (GMT -6)   
I hope the latter case is your worse problem, yet that's bad in itself. I got my rheumy appointment Monday, and I've got my fingers crossed. I have been having horrible breathing problems (which is terrifying), lung granuloma that may need removing, double vision, weird nerve sensations and starting to get what is probably meniere's disease (another symptom of having an autoimmune disease), as I have been getting horrible vertigo and hearing problems.

I get dizzy when I'm sleeping, and my dreams will even mimic how I feel, where I will dream that I'm in a sinning room or I can't walk because I'm so dizzy.

I'm scared that I am dying some days. I'm just too young to go. Hopefully I can get treatment soon.

Lynnwood
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Date Joined May 2005
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   Posted 3/17/2011 9:49 PM (GMT -6)   
Couchtater,

Dunno' what kind of doctors you are seeing, but I would suggest consulting an allergist AND a rheumotologist. Other drs think they know about allergies or Lupus, but these are complex issues and often need the specialists to make the final diagnosis.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 3/18/2011 2:24 PM (GMT -6)   
The doctor who is doing the bloodwork is an allergist. He's running the screening tests and then will tell me if I need to see a rheumotologist. He's considered an excellent diagnostision (sp?). He told me my hypothyroidism is like my body is allergic to my thyroid. No one ever refered to it like that. He said autoimmune diseases are your body is allergic to yourself in some way.
Joy

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/19/2011 1:19 PM (GMT -6)   
That is one way to put autoimmune disease. Your body mistakenly sees healthy bodily tissue as an intruder, like a bacteria that must destroyed, and proceeds by attacking the body. Basically, your immune system had become incompetent and attacks the body instead of helping it. It's a very strange kind of disease, caused by your own body.

Bsime
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Date Joined Apr 2006
Total Posts : 1342
   Posted 3/19/2011 4:00 PM (GMT -6)   
Think of an autoimmune disease as one where the immune system is misdirected.  Instead of attacking foreign invaders (viruses, bateria) and cancer cells, it mistakenly attacks the body.  Why it does that is the big question but it is probably due to a set of inherited genes or genes that were damaged or mutated and when the right insult comes along it triggers the response. 
 
In my case I was very healthy with no infections for 5 years before getting sick.
 
Bill

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 3/19/2011 4:01 PM (GMT -6)   
immune system is over active rather than incompetent. it forgot who the enemy is and starts attacking everything randomly instead of focusing on germs & such.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/20/2011 8:14 PM (GMT -6)   
Lynnwood said...
immune system is over active rather than incompetent. it forgot who the enemy is and starts attacking everything randomly instead of focusing on germs & such.


So would an overactive immune system make, say a lung infection, particularly a fungal infection, potentially deadlier than it would be for a person with a normal immune system? I would think so. I have a particularly worrying granuloma/fungus ball in my chest, but my pulomonoligst thinks it will go away on it's own, but I'm also having Lupus symptoms and I read that this combination can be deadly. I doubt anyone here would have an answer to something that uncertain, but what would you do if you found out you had a condition called aspergillosis while living with SLE?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/20/2011 8:36 PM (GMT -6)   
If you have an autoimmune disease your immune system is still functional but something has triggered it to respond to a false signal and attack your body.  If you are not on suppression meds it might do its' job of fighting infections or it might not.  If you are on some kind of suppression med as most of us are then the immune response is "tranquilized" for everything....good and bad.  That is why you are at much higher risk of infection or cancer depending on which med(s) you are taking.
 
Your specific questions should be addressed to your doctor and if you are not satisfied get a second opinion.
 
Bill

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 3/20/2011 8:39 PM (GMT -6)   
yup, Bill is right.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/20/2011 10:46 PM (GMT -6)   
I think a second opinion is unavoidable at this point. I'm not on immunosuppressants or anti-inflammatories right now, but if I do begin them soon, I will need to address this issue before starting them. I was just wondering if having an autoimmune disease, which can obviously make you more susceptible to getting infections, should make me concerned, but my pulomonologist doesn't seemed versed on autoimmune diseases.
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