Questions for the rheumy

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Red_34
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Date Joined Apr 2004
Total Posts : 23427
   Posted 3/19/2008 10:16 AM (GMT -7)   
I have not been officially diagnosed with anything yet and I wasn't exactly sure where to post this.  But since I've been suspecting Lupus for a while now I thought I would start here.  I'm not even sure I have Lupus but if you all could indulge me for a minute or two I would appreciate it  :-)
 
I've been having strange "episodes" coming and going for the past couple years.  My primary has ran many tests including blood testing for Lupus.  It has always came back negative.  So I just sort of let it go for a while.  Well now one of the symptoms I am getting - which is what brought me to the doc this time - is leg weakness.  I feel like I'm going to collapse at any given time and it worsens with activity.  Plus severe back lower back pain (I was diagnosed with Sacroiliitis) and recieved steroid injections.  I recently had an MRI and I'm waiting for the results of that.  But some other odd things that have been happening is sporadic rashes, major heat intolerance, night sweats, headaches, blurry vision, nose sores, rash on my face (upper lip, chin and across my nose and under my eyes), tingling and numbness in my feet upon sitting, stiffness (oh boy the stiffness is horrible!), hot flashes, sometimes having trouble swallowing, Raynauds - the list goes on and on.  But anyway, I went thru another battery of tests and this time my ANCA came back positive so my doc is referring me out to a rheumy.  I guess the ANCA can come back positive with someone who has an IBD but because of my other symptoms she felt safer to refer to a specialist.
 
So, what sort of questions should I be asking the rheumy doc?  What can I expect from my first visit?  My appt with on April 7th.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 3/19/2008 11:48 AM (GMT -7)   
Make a list of symptoms and when they began. Also a brief medical history is a good idea. The first visit should be more about the doctor analyzing what is happening with you. I know AlwaysRosie has a link in her signature that would help, hopefully she will post here.

I also suggest asking for a referal to a neurologist to be screened for MS. MS and lupus can mimic each other, actually a lot of autoimmune diseases mimic each other. Your leg weakness worries me, I used to work with a woman with MS and she was diagnosed only after she began having leg weakness and you said you have had visual things going on too. Another good referal would be an opthamologist- not an optometrist but the eye doctor who is an MD.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Lynnwood
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Date Joined May 2005
Total Posts : 7020
   Posted 3/19/2008 2:09 PM (GMT -7)   
Welcome to Lupie-Land ! (ha)

We have a sticky thread at the top of the page (Lupus Resources) that has lots of information about what to gather up to show your doctor.

You can also follow the link in my signature to get to it. It is a compilation of things that all the members suggested from their experiences.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



Red_34
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Date Joined Apr 2004
Total Posts : 23427
   Posted 3/19/2008 2:11 PM (GMT -7)   
Thanks redrose. The MRI I recently had was to check for MS so we shall see what that comes up with that in a few days. I just had it on Monday. I'm not sure what I am experiencing to tell the truth but hopefully a specialist can help pinpoint the cause of my "dilemas". I just want to be prepared for when I go see him. And yes, I've read the websites in Rosies signature many times. As well as frequented the MS sites. The list is a good idea :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23427
   Posted 3/19/2008 2:12 PM (GMT -7)   
Ha! We must've posted at the same time Lynn :) Yes, I've checked those websites but not the sticky - I'm off to check that now.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 3/19/2008 2:21 PM (GMT -7)   
Sherry, I don't have anything to add, I just wanted to say that I hope your appointment goes well and that you don't have lupus. Please let us know how your appointment goes and if you find anything out.

Take care and please ask any other questions you have.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 3/19/2008 2:25 PM (GMT -7)   
Ask your doctor to set aside the test results and what does his gut tell him.  If he feels that you have Lupus ask him if he will treat you for it.  Plaquenil is usually the first med they'll put you on.  Maybe he'll put you on it and see how you respond.  That will tell alot.
 
Red, don't get discouraged.  Many of us went for years knowing or thinking we have Lupus.  Personally, I have had symptoms of Lupus since 1985 but didn't get the official diagnosis of Lupus until September '07.  I had doctors who thought I had Lupus and at least treated me for it.  You can go many years and get false negative test results.  It's so discouraging and depressing, when you can see it written on the wall, why can't everyone else?  They've come a long way in 30 years with autoimmune testing but for some reason you can still have it and your tests be negative.  One of the tests they do for Lupus, the Anti dsDNA has been negative on me for years.  Then one day they take the test and it's not only positive, it's high.  In one month it has jumped up 500 points to 2,700.  IMHO it has to get to a point where it effects your body in one way or another for it to be detectable.  You can have all the symptoms in the world but doctors hate to stamp Lupus on your records because it's so hard to get health insurance after you get a diagnosis of it.
 
I'm not quite sure what I thought would happen when I finally got that diagnosis of Lupus, maybe I thought I'd start to feel better.  Instead, I have progressively gotten worse to the point I can't take care of the things in my home, let alone myself anymore.  A lot of us have had doctors look at us and tell us "it's all in your head."  My best advice that I could give you would be if you have the symptoms but not the test results to back you up and your doctor is unwilling to treat you based on your symptoms, find another doctor and if he does the same thing then you keep on looking for a doctor until you can find one that will listen to YOU, listen to your symptoms, and treat you on those, not on some blood tests that can give false negative results.  Above all, remember you are not alone!
 
Good luck!
Gidget^
 
SLE 9/07, Meniere's Disease 2/08, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Pepcid, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/19/2008 2:56 PM (GMT -7)   
Hi Sherry,
 
That MRI will be key in at least eliminating or confirming an MS diagnosis.  Like the others said, lupus and MS can really mimick each other. Please let us know the results okay.
 
Another cousin to lupus is MCTD or UCTD - mixed connective tissue disease, or undifferentiated connective tissue disease.  When lupus can't be absolutely positively diagnosed, many people, lots here!, are given these names for their symptoms.  The treatments are the same as with a lupus diagnosis, but the name is different.  You do have plenty of lupus symptoms, so I hope this visit with the rheumy works out really well for you. 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/19/2008 3:05 PM (GMT -7)   
Hi Sherry, I hope your visit with the rheumy goes well, please let us know.

Some things you can expect on your first visit is, telling the doctor of all your symptoms, going over your family history and the doctor should examine your joints, hair, skin, etc. If you have a rash now go ahead and take a picture of it in case it's gone by the time your appt rolls around. Don't wear any makeup to your appt. The visit should go into great detail, he/she should spend some time with you, my first appt was 1 1/2 hrs.

Take care and let us know if you have any more questions.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23427
   Posted 3/19/2008 3:27 PM (GMT -7)   
Nope, no rashes now but I did have a major one a couple months ago that I managed to take a picture of - my primary even seen it. It was verrrrry wide spread (my entire torso and legs). It went away within 24 hours.

I will try not to get frustrated but to tell the truth, I am! I have spent so many years and much of my time when I was younger trying to get the docs to take me seriously. But I think because of my youth that they just didn't believe me. Also too maybe because of the fact is that I NEVER looked unhealthy but I felt like there were times I were dying. Then I got diagnosed with Uc and than the docs started blaming everything on my Uc. I felt like pulling my hair out! Finally I found a doc that is willing to look outside the Uc box and try to find out whats wrong with me. But while after all this time of not knowing what the heck is wrong with me, things have been getting progressively worse. Now I have symptoms that can not be explained by Uc alone that they're taking things seriously. I felt like I had to be at deaths door just for someone to "hear" me! Oops that was sort of a rant lol sorry :)

Thank you everyone for the suggestions and ideas.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/19/2008 7:32 PM (GMT -7)   
oh yeah, if the doctor is not a lupus expert you may have problems. Not all rheumys are lupus experts. If his other patients are all old then you likely will have problems and need a second or tenth opinion. Sorry, lupus experts are really rare.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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