Waiting for diagnosis

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RachMarie
New Member


Date Joined Mar 2014
Total Posts : 6
   Posted 3/15/2014 1:55 PM (GMT -6)   
Hi everyone,

I am a 25 year old female currently in the waiting period of a diagnosis. I went to my GP about a month ago with some strange neurological symptoms ( migraine-like headache lasting 3 or 4 days, numbness and nerve pain on left side of body, fingers twitching) I am also always tired, get sores in my mouth off and on, don't have much of an appetite, and have noticed my hair start to fall out.She ordered some blood tests which revealed I am Vitamin D deficient, Anemic, have a low wbc and a positive ana 1:640 with a nucleolar pattern. A week later she retested my ana and did an ena panel. My ana came back exactly the same and I also had a high positive of the Anti-Ro/ SS-A antibody.

From what I understand, getting a diagnosis in the autoimmune area can be a very long frustrating process and nothing is very clear cut but I'm feeling so discouraged! My GP said she didn't know exactly what those results meant but that there is definitely something going on. I'm seeing a neurologist in 2 weeks and a rheumatologist in a month but I'm hoping in the meantime someone can ease my mind a little.

Is it possible to have such a high ana and also have the ss-a antibody but have something other than Lupus/Sjogrens/RA? Do those results mean I definitely have a connective tissue disease?

If anyone could give me some insight during this anxious time I would appreciate it :)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 3/15/2014 2:08 PM (GMT -6)   
Waiting for a diagnosis can be one of the most frustrating parts of autoimmune disease. In the meantime, educate yourself and try not to worry too much. Stress is your enemy. And let us know more about yourself. While I was in diagnosis limbo I found real support here, not to mention real life information.
SLE, fibro, renauds, restless leg?

RachMarie
New Member


Date Joined Mar 2014
Total Posts : 6
   Posted 3/15/2014 3:04 PM (GMT -6)   
PattyLatty- Thanks for responding! It's nice to know there is a place to come for support and people who know what you're going through. I've been feeling very alone in this situation. Between waiting for phone calls about lab results and doctors appointments I feel like I'm making myself sick with the anxiety.

A little more about myself- My name is Rachael. I'm a 25 year old woman working as an Esthetician. I had been without health insurance for a few years so I wasn't able to see a doctor until recently but I've been having these strange symptoms for the past few years. There is a history of autoimmune illness in the maternal line of my family, particularly Lupus and RA, so it's not much of a surprise that I probably have one.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 3/15/2014 4:30 PM (GMT -6)   
You are a year younger than my daughter who is also showing signs of autoimmune disease (although hers is very mild) and it always saddens me to hear of young people who have to struggle with this disease. My mother also had lupus.

I just posted on Dri's thread and talked about getting ready for a first appointment with a rheumatologist. You might find this helpful. There's also a Resources tab at the top of the main lupus page that is full of good info.

I'm glad you're finally able to get medical care!
SLE, fibro, renauds, restless leg?

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/15/2014 9:06 PM (GMT -6)   
Hi Rachael, your a year older than I am, I'll be 25 in a few months, May. I am waiting to find out if I have Lupus too. I have already been diagnosed with Hashimotos thyroditis too, which is also an auto immune disease. My endocrinologist said he wont treat my hashis though so I am stuck feeling incredibly ill. This has been going on for 5 years with out treatment because I lost my insurance. The endo thinks I could have Lupus and/or scleroderma, but my brother has lupus too and it's hereditary so I'm leaning more towards lupus. I wont know until next Friday. I too am terribly tired, I fall asleep while reading. I have become so weak too. The scary thing about having these auto immune diseases for me is that it can/will start attacking other organs such as heart, kidneys, lungs and brain oh and blood. The problem with that is I have a heart condition, asthma and thick blood. I don't have room for something to attack my already damaged organs. I was in the hospital last summer from a mass on my kidneys too. I am suppose to be getting surgery on my heart too. Waiting for the heart surgeon or heart department at ucsf to approve the referral. These diseases have made my esaphogus swell making it hard for me to eat or swallow my medications, they get stuck in the middle and I have to cough them back up. I have so many dr appointments to go to, my callendar is filled up. I am in so much pain it's disabling as well as crippling. I also need surgery on my spine because I have a severe t9 compression fracture which is putting so much pressure on my spine it's making my muscles in my back and neck swell. Hashis as well as lupus and scleroderma all cause joint pain and muscle pain too. All these dr's and specialist that I have been seeing keep saying how they see why I am in so much pain and say I need to be on strong pain medications but no one will give them to me. :( I am currently taking tramadol, lyrica and nucynta to treat the pain, but even when I take all three of them it still doesn't even touch my pain. My pain in my hands have crippled them so much that my endocrinologist referred me to a rheumatologist and told them it was an emergency situation, to get me in asap so I have my apt for Monday. I am really hoping I get some pain relief from them and they wont refer me somewhere else for the pain meds. I was so discouraged after my apt yesterday that I came home, turned off the lights, closed the shades and laid in the dark while listening to music. I have slipped into a depression because of this anti depressant my doctor pt me on to quit smoking and help my anger I told him this would happen too. I've stopped taking it but am still depressed because of all this medical stuff. I am so scared. I was reading infections are the leading cause in death for lupus patients and I am prone to infections, I get sick all the time too. I am scared my immune system wont be strong enough to pull me through all the surgeries I am going to have to under go. I am not trying to scare you at all or anything and I know this information may or may not be helping but I guess I just wanted to shed some light for you. Basically it sounds like they are getting to your problems in time, and I guess I just wanted to help you feel better by letting you know that it could be a lot lot worse. Try and stay positive, like one of the posters said, stress is your enemy. My cardiologist ended up putting me on a low dose Xanax to help keep me calm through all of this. I don't know if it's helping though, I mean it is I think but it's adding to my tiredness and it's such a low dose that I need more than just one pill. I hope they get to the bottom of what's wrong so they can treat it before it get's so bad that your falling asleep sitting up, or that you don't have the strength to even sit up. I feel so sick and miserable that there are times where I am bedridden for a a good 4 or so days, just last week in fact I couldn't even sit up because it made my symptoms flare up more.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/15/2014 9:17 PM (GMT -6)   
You two are so young to have to endure so much.
I feel for you both.
I was told four years ago when I was 41 that I had lupus. It took six months from the time I mentioned a strange rash to my allergist to the time I got an answer from my rhuemy.
Some people take longer.
Make sure that you both get checked out for sleep disorders.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/15/2014 9:23 PM (GMT -6)   
Please don't let your fears and imagination get ahead of you. A diagnosis of Lupus (or other auto-immune disease) does not mean you WILL get organ damage, it simply means you MIGHT get organ damage. And you might get organ damage from many other illnesses as well.

See a rheumy, let them do their magic. With prompt treatment and reasonable ways of living you will get thru this, no matter how quiet or how active your disease might become.

Hang in there!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

RachMarie
New Member


Date Joined Mar 2014
Total Posts : 6
   Posted 3/15/2014 10:03 PM (GMT -6)   
Thank you everyone for your responses! This seems like such a supportive community. I'm glad I found it.

Jennie89- I'm so sorry for all of the pain you're going through. I can definitely relate to the fear you're feeling but I'm trying to stay positive as well. You're dealing with so much all at once, I can't imagine how hard it must be but I admire your courage :) I hope you get some good news soon!

Jennie89
Regular Member


Date Joined Mar 2014
Total Posts : 156
   Posted 3/15/2014 10:32 PM (GMT -6)   
Rachel, Thank you. It is nice to have someone else realize how much I'm going through. I hope for some good news too, for the both of us.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/16/2014 11:03 AM (GMT -6)   
Hi Rachael, I'm sorry to hear you are on the roller coaster ride of diagnosis. Hang in there kiddo, it does get figured out eventually. Just take one day at a time.

Hugs,
Joie
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

RachMarie
New Member


Date Joined Mar 2014
Total Posts : 6
   Posted 3/19/2014 4:12 PM (GMT -6)   
Thanks Joie :) I appreciate the support.
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