I am new and scared!

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New Member

Date Joined Feb 2008
Total Posts : 2
   Posted 2/5/2008 2:46 AM (GMT -6)   
eyes  Hello my name is Sheyna.  I have completed all my blood work.  I went for my MRI of my spine this evening.  On Friday I go for an MRI of my head at 6:45AM (No Mercy!).  The doctors have not said much however three of four have been baffled that I was not tested for lupus.  I also have one of two neurologist making sure I do not have MS.  Please ignore the mistakes my hands are in pain tonight.  Can everyone please respond with their first initial syptoms that got them to see the doctor and what the test were that they went through and what was the test that was the decider.  I was told Lupus is comparable to MS, is it? I am totally lost I look forward to any advise......and thanks ahead. tongue

Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 2/5/2008 6:55 AM (GMT -6)   
Welcomw sheyna, I glad that you have found us. For me I had been having trouble for years. The thing that got me tested was that I had and accident with my work van. That sent my blood pressure up and me out of work. When my pcp did blood work, the test came back with a posative ANA. So, he sent me to be tested by all kinds of doctors.

I hope you are doing well.
Enjoy what you can today and leave the rest for another day.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 2/5/2008 7:03 AM (GMT -6)   
Hi Sheyna . . . welcome to the forum!

Pain, Fatigue, rashes on face, fatigue, chest and hands, sun sensativity, hands, arms, feet go numb/tingly, did I say fatigue??

Glad you found us. I hope your docs help you get to the bottom of things quickly.

Lupus can attack most any organ/system in the body. It usually attacks the lining or the covering of an organ. Thats why you'll often see rashes on lupus patients. Our immune system attacks our own body.

MS . . . I believe the immune system attacks the covering on the nerves. So it causes different problems and is treated with different meds.

There are some helpful links at the end of my signature.

Keep us posted!


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

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 2/5/2008 2:17 PM (GMT -6)   
Hi Sheyna and welcome. I'm so sorry you are dealing with all of this and that you still don't have any answers. Being sick and not having a name for it can be so hard. I really hope that after all of the tests are done hte docs will be able to tell you what is wrong and that they can start treating your symptoms.

Please ask any other questions you have - all of this can be overwhemling.

Take care and please keep us updated on what you find out about your test results.
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



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/5/2008 4:21 PM (GMT -6)   
Hi Sheyna,
Another welcome to the forum!
My first symptoms were pain in my jaw joints (TMJ), strong sensitivity to fluorescent lights, sunlight, heat.  Fatigue.  Then it moved into feeling like I had the flu all the time, but never, ever had the flu.  Pneumonia, pleurisy (inflammation of the lining of the lungs), inflammed heart valves, heart palpitations.  Lots of headaches.  The pleurisy and heart palpitations put me in the hospital.  that's when my diagnosis came.  It took over a decade of doctors and tests and worsening symptoms to get the diagnosis though.  I had ALL the positive blood work too.
Lupus is only comparable to MS because they're both autoimmune diseases.  The early symptoms of both diseases can be very similar, but an MRI will quickly determine if it MS or not.  The brain lessions are totally different. 
Let us know how it all goes okay,
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

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/5/2008 5:05 PM (GMT -6)   
Sheyna, I am so sorry you are in the dx hunt. MS is very different than lupus though both can respond well to steroids like prednisone.

I am unsure what exactly my first symptoms were as I have been ill for so long and it took so darned long to get a dx. I suggest consulting a rheumetologist. They will know how to proceed in testing you, but please make sure that the rheumy you choose specializes in lupus because not all rheumys are well versed in lupus. I know everyone assumes all rheumys can dx and tx lupus but the truth is that only a handful of rheumys know lupus well. The one good thing is if you find a dr who knows lupus well then you have found a doctor who knows medicine and the human body well- at least according to the doctors I have seen who have commented- and the reason is lupus can affect every single body system. Lupus is different is every single person.

I suggest going to lupus.org for good info if you want to understand the disease better.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 2/5/2008 7:07 PM (GMT -6)   
Hi sheyna, welcome to the group. Hey i'm with you they are setting me up for a mri of my spine and my brain with a neuro.
My first symptoms were I had a flu bug that felt like no other flu I ever had. I ran 103 temp and cried in my sleep. My knees to my feet swelled up so bad I couldn't zip my boots up. The doctor looked at my back which has a rash (like spieder veins) an the doctor did a blood test and my tests all came back with high ANA and High sed rates and she started me on lupus meds and sent me to rheumy's I'm on my 3 rheumy now so don't get discourage if you can help it if it takes lots of time and lots of doctors. I would be amazed if you found out anything for months maybe years. Normally what happened is you get treated for symptoms long before you get diagnosied with a disease.
welcome again hang in there
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 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 2/5/2008 10:51 PM (GMT -6)   
Hello Sheyna! Welcome to HW! I had many of the symptoms that Rosie describes such as:

Fatigue, joint pain, rash, hair loss, red rash on face and bridge of nose, unexplained fever, protien in my urine, and, then, more and more FATIGUE! At the very beginning, my arms and fingers would go numb at night and wake me up. All of the other symptoms came along very soon afterwards.

My prayers are with you!
Audrey Ann
Lupus and RA and LOTS of Medications!


Regular Member

Date Joined Sep 2007
Total Posts : 151
   Posted 2/7/2008 9:16 PM (GMT -6)   
Welcome Sheyna. I too am in dx limbo. I hope you get answers soon, not knowing is hard.

Audrey, I had the same problem 1 year ago, I would wake up with both hands numb, I had to shake them around to get the feeling back. At first I thought I was sleeping on them, but it happened for 6 days in a row, even with my hands on my chest, so it wasn't positional.

Regular Member

Date Joined Oct 2007
Total Posts : 100
   Posted 2/7/2008 10:24 PM (GMT -6)   
Hey Sheyna...
Glad you are here... it can be very comforting having what you feel and think validated...at least that's how I feel. Helps you know you aren't crazy, you can talk to people who understand you, and vent when you need to!

I hope you get a dx soon. That is the worst part, I think. When you know what you are dealing with, you can become informed and tackle it head on.

Mine started out as joint pain. I guess I was probably feeling the fatigue too, but just thought I was doing too much and being a slug. I had the brain fog (still do)...but I never reported that to any doctor as a symptom. I just attributed it to stress and being too busy. I also had the ridiculous sensitivity to the sun...which I just sort of blew off. I didn't have the fever like many have. In fact, I tend to run a low body temp. But - you know how sometimes you feel like you have a fever (not to the touch, but sort of in your head... does that make sense?) I had that. So - not sure if it was lupus related or not.

That's the thing with lupus...it's all of these obscure symptoms that often don't really seem like "symptoms" at all.

Compared to most...I'm finding that I was diagnosed fairly quickly. But, I attribute that to two things: My sister has RA and I made my PCP aware of it. After a bunch of cortisone shots in my elbow and it not helping, then physical therapy that didn't work, he honed in pretty quickly...thought I had either fibro or RA. Turns out it was lupus. He sent me for blood work that showed high ANA. From there, the PCP sent me to the rheumetologist who did a bunch more blood work, urine test, and x-rays. I had all the classic signs of lupus through my bloodwork (sed rate, etc.), but the clincher was the results of the anti-dsDNA.

I know it is easy to say, but don't borrow tomorrow's trouble. Meaning don't assume the worst. Deal with facts, not speculation.

I guess one thing lupus has taught me is to be patient (definitely NOT a strong point of mine...I'm the instant gratification, make a decision and get on with it - type). I have learned to be patient waiting for test results, patient waiting for doctor appointments, patient waiting to get off prednisone, patient waiting to feel good, patient waiting to remember the word I'm trying to say. You get the picture.

Make sure you let us know what you find out. And, keep coming here to ask questions...

SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 9 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil, lybrel, Keppra (as needed)

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