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JeepGirl
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/15/2008 8:11 AM (GMT -7)   
Hi all,
 
I'm new to the forum. This seems like an amazing resource. Saw my first Rheum doc yesterday. 5 vials of blood later I hope to get some answers! Been feeling horrible for about 11 years. Doc thinks it is lupus or course my neuro was sure it was MS. So far that turned out wrong. Oh goodness! Just looking for some support and friendship with folks like me! Have a great day everyone.
 
Take Care
JeepGirl

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/15/2008 8:17 AM (GMT -7)   
Hey JeepGirl!!

Welcome to the forum sis!! Yup! You've found a great place for understanding and information. I hope you'll keep us posted as your doctor tries to figure this out for you. It sure can be a long process.

Is he treating your symptoms?? That's key. Some of us have been dx'd and un-dx'd but the key is that he is agressive in treating your symptoms. Sometimes they work hard to figure out what is wrong and then they do all but say that it is Lupus. The really want to keep it out of your medical records as it can cause a problem if you switch insurance later.

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


JeepGirl
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/15/2008 8:40 AM (GMT -7)   
Thanks for the warm welcome Rosie! No treatment yet. They are trying to find answers. I have had a headache for the last 11 years. There has not been 1 day that I have not had one. Nothing helps either. I have had every possible test, treatment, alternative med possible. Then about a year ago my right elbow/arm started hurting. I thought it was tennis elbow. But it got worse and then the left started hurting in the same areas.. Then knees, shoulders, neck is so stiff I can barely turn it and back. I do have rosie cheeks and nose. I just thought I was lucky and didn't have to buy blush. My mom told me that even as a kid I had the sunburn look. My skin is not too sensitive to the sun but my eyes are. I have to wear sunglasses on a cloudy day. I also got a sudden onset of depression about 6 months ago. I have never had depression before. I thought I was going crazy. Thanks to Cymbalta for helping that out.
 
I had a severe case of Mono as a kid. Anyone have that? Wondering if it could be somehow related.
 
Thanks for letting me vent. I just feel at the end of my rope. I'm 31 years old and feel 81.
 
Take Care
JeepGirl

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/15/2008 9:04 AM (GMT -7)   
Hey JeepGirl,

Yes . . . several here have had mono . . . we just don't know if it is a higher incidence than the general public.

Also . . . anything that stresses the body can bring on a Lupus flare IF we have Lupus. Lupus can also ly dormant for a long, long time.

Your symptoms really could be lupus . . . I hope your doc starts some treatment soon. He may be trying to get these tests in before meds would mask the blood work for some of them. I had to wait for treatment too and by the time they figure things out you could pass thru this flare and feel ok again.

Be careful of the sun. It doesn't just affect your skin, it has a cumulative affect and it can cause a flare. Many Lupans don't even realize that the sun affects them because it can take a while to show up. . . and they never realize that the sun was part of the flare.

Cymbalta should be helping some of your pain issues too. Most people with chronic illness require an anti-depressant . . . as the pain and illness wipe out our endorphins which help the brain to fire correctly . . . glad you got some help with that.

I hope your headache isn't from APS . . . your doctor is likely checking for that (thick, sticky blood). Its important that they check because this can cause strokes and heart issues and is easily treated with blood thinners. APS is anti-phospholipid or anti-cardiolipid which can be detected in blood work.

Keep us posted!! and feel free to ask any questions.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/15/2008 5:48 PM (GMT -7)   
Hey Jeepgirl! Welcome!
 
You have foundyour way to a really nice bunch! I too am in the same boat as you. I'm not dx'd yet but have many symptoms.  Like you I had an attack of depression andfelt like I was ready to lose my mind. For me, it was out of the blue, couldn't understand it. I was given anti-depresents but did not take them...good thing too, cause it went away on it's own!
 
When will you get your results back? Keep us posted, k?
 
Hang in there!
 
 

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/15/2008 5:59 PM (GMT -7)   
Hi Jeepgirl, well it souns like you already got some good info from the others. I do hope the doctor doesn't wait to long to give you somthing to help you feel better. It is not uncommon to start treatment without being diagnosised. It usually turns out that way because it takes so long to get a DX. You shouldn't have to suffer so much for so long. If you don't get any results soon you might think about seeing somone else. Most of us have gone thru a whole army of doctors trying to find one we could work with. or that took us seriously.
Anyway, your right finding someone who knows how you feel is a wonderful thing. I remember feeling like I was finally home when I got here!
hope you get some answers soon and please keep posting let us know how it's going
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/15/2008 6:12 PM (GMT -7)   
Just wanted to add my hello! Hope you find some answers, quickly!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Imuran, Zyrtec, Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.


JeepGirl
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/16/2008 6:32 AM (GMT -7)   
Thanks for the information and making me feel welcome here! I am really enjoying reading all of the posts. I have learned quite a bit in a short time. My doc is running many blood test and said that it could be 3-4 weeks before I have the results in. I have a follow up appt in 3 weeks. Hoping for some news then. Thanks for the support. What a wonderful place this forum is!! I feel like I am among friends!!

:-)

Take Care

JeepGirl


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/16/2008 10:12 AM (GMT -7)   
Hi JeepGirl.  Welcome to our forum.  Depression was my first symptom of lupus, but I wasn't diagnosed with lupus until 2 years later.  Any time you're depressed or in pain (I know that's daily for you) please feel free to vent with us.  You'll get lots of support here.  Let us know how the tests turn out. I sending lots of positive energy to you! 

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil methotrexate Imuran prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  
PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/16/2008 10:18 AM (GMT -7)   
Hi Jeepgirl:

Just another welcome coming your way. This is a wonderful bunch of ppl and lots of great information. Just wanted to extend another welcome.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/17/2008 10:10 AM (GMT -7)   
Hi Jeepgirl - I'm adding my welcome along with all the other warm welcomes you have gotten. This is a really great forum and you'll find lots of good info and support here. I really hope the rheumy gets some answers from your bloodwoork. Being in diagnosis limbo can be so frustrating.

I'm one of the people who had a bad case of mono that seems to have started some of my health problems. I had mono when I was 18 and never felt the same after that, although I had some years of relatively decent health before getting lupus symptoms. I was finally at a place where I could work out a lot and be healthy and then I eneded up with lupus.

Please feel free to ask any questions you have. I hope you'll keep us updated on what you find out from your doc.

Take care and I'm glad you joined us.
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; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/17/2008 6:24 PM (GMT -7)   

Hi Jeepgirl!

Here comes another welcome!!!  I'm glad your doctor is being proactive on doing all these tests.  I hope you get the answers you need very soon.  In the meantime, I hope you learn lots from all of us, and we can learn from you too!

Oh, I'll be 34 next month, but I feel 84.  So we're both feeling very senior citizen right now!  Isn't it fun! (sarcasm buddied up with steam coming out of my ears).

Talk with you soon!

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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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