View Full Version : How long does it Take?

05-21-2009, 08:15 PM
Here are my symptoms to date. (see below) I copied it from my word document. Any suggestions on how to keep better track of symptoms, meds, tests and diagnosis? How long can it take to get a diagnosis? I am so frustrated when I read that some of you suffered for 4 years or more. I don't think I can be that strong. My PC doc has finally referred me to a new rheumatologist.

Joint Pain- (hands, knees, ankles mostly 2007 (currently everywhere)
Arms, feet & legs tingle Ongoing (more so in past two weeks)
Pain in Right thigh feels like electric shock (Off and on for past three weeks)
UTI and/or Kidney infection 1-27-09, 4-13-09, 5-21-09
Severe Headaches (ongoing) 1-27-09 to present (more in past week)
Fatigue Forever
Raynaud's- white fingers and toes, cold 4-2008 - occasionally
Vitamin D deficiency- January 2009 (diagnosed)
Pleurisy 2002- (ongoing 8 times that I am aware of)
Extreme diarrhea 3-1-09 to 4-9-09
Fevers (intermittent) Since beginning of 2007 low grade
Skin lesions Ongoing
Anemia as a child and occasionally as an adult (during pregnancy)
Frequent and severe nose bleeds since 2006
Hair loss January 2009- (intermittent)
Chest pain upon breathing/shortness of breath often
Weight fluctuations (diarrhea and nausea related)
Swollen glands (continuous left neck, occasionally in groin)
April 5-13, 2009 Severe pain right knee, mild in left both swollen
April 8- April 13 Chest and rib pain
April 12 2009 Cortisone shot
April 12, 2009 UTI
April 20, 2009 Knee pain (both), all day headache
April 21- present both knees pain worsened (more severe rt. Knee) Pain in all joints- even toes.
May 12- 17, 2009 Mouth sores
Sun or light sensitivity (photosensitivity)
unexplained easy bruising
Mouth or nose ulcers
Dry eyes
Memory loss
Antinuclear antibody test positive Butterfly-shaped rash (malar rash) across the cheeks and nose, Discoid rash - red, scaly patches on skin that cause scarring

Appointment w/PCP Referrals: Urologist, ENT, New Rheumatoid doc. Medications: Celibrex (new), nortriptyline, hydrocodone, promethazine Tests: Blood (vit. K), urine (uti), Thyroid ultrasound (May 29)

05-22-2009, 03:15 AM
I was in the hospital all last summer before they finally gave me an official diagnosis, but I had symptoms since I was 19, I just did not pursue it. I know people who have been diagnosed very quickly, and then there are people who wait years. I honestly think that it depends on the doctor.

05-22-2009, 10:23 AM
From your listed symptoms and lab results, it is kind of evident that you are dealing with some type of auto-immune/connective tissue disorder. The problem is...there are SO MANY auto-immune diseases and their symptoms overlap and mimic one another. Also, symptoms appear slowly, some disappear only to be replaced with new ones. Therefore, doctors are loathe to make a quick diagnosis because of these frustrating issues.
You've been referred to a rheumatologist. If he is a good one, he will begin treating your symptoms, so that you can get some relief, even in the absence of a definitive diagnosis.
I wish you the very best!

Peace and Blessings

Angel Oliver
05-22-2009, 12:36 PM
Yes...thats important what Saysusie just said....even though you may not have now a diagnosis,your Doctor WILL give you meds to help with pain.So dont worry about what we write....we are all getting help....all the time.Maybe some meds dont work,but the Doctor will NOT leave you to suffer he Will help you.We will help you with advice and stuff.....and fun stuff...so hang in there!!

lots of love

05-26-2009, 04:04 AM
Well, it only took me 5 months from my first symptom to be diagnosed.
It wasnt until April this year when i was hospitalised with severe ITP (platelet count was 0), that everything moved really quickly though.
I hope that you can find some relief and some answers soon...

05-26-2009, 10:37 AM
Truly I do. 3 years and three rheumatologists for me. You are doing a great job of tracking your symptoms. Keep it up.

Here's a piece of advice you won't hear often when it comes to the diagnosis thing....patience is a virtue. Now, just before you shoot the messenger, hear me out -

Take a step back, take a deep breath, gather all of your inner strength, and keep moving forward. Decide right now to take charge of this situation. Treat your health like you would your own business. The more frustrated and stressed you are in business, the less likely you can work yourself out of a difficult situation. A clear mind and level-headed thinking can see you through most crises. Like your business from which you earn a living, your health should also be treated like a business. Stress and frustration brings out the worst in a lupus flare, and stress is just bad for your health generally. It keeps your body from healing. So, I say this will all the love in my heart. Take very good care of yourself, rest when you can, stay focused on the goal - which is finding a good rheumatologist with whom you can work to relieve your symptoms until you receive the proper diagnosis. So much of your working relationship with your doctor relies upon how effectively you communicate what is going on. Be prepared for your appointment. Be calm and informed. Your new doctor will take you more seriously and if not, find another doctor.

Trust me, I am speaking from experience here. I was a walking repository of symptoms...it seemed like I had a new ailment every day. I swear, despite all of the medical evidence indicating that I had an auto-immune disease, I had two rheumatologists practically ignore me because the dam literally broke when I finally got in to see them. They treated me as if I was a hypochondriac, and ignored medical evidence to the contrary. (For example, my ANA was 1:5120 at my first rheumatologist appointment). So, I suffered without any treatment for another two years, and much of that had to do with how I approached the doctors. You can be a victim of disease, or you can be victimized by it. In my experience, neither option is acceptable. When I changed my attitude from being victimized to being a victim, and then to refusing to be either one, my life changed. I became educated and informed about what was going on with my health and I started taking charge of my situation to the best of my ability. The word victim, in any form, was no longer a part of my vocabulary, my attitude, or my approach. I found a new doctor who responded to my situation by becoming a partner in my health and well-being. I changed the course of my life, and you will too. This is not to say that I am well, or that I will ever be disease-free. Quite the contrary. But as many wonderful people on this forum have taught me...I have lupus. It does not have me.

You are in my thoughts and prayers as you proceed in this journey.

05-28-2009, 05:04 PM
Jana said it BEST, one foot in front of the other:yes: Dont tell yourself "you dont" or "you cant" because YES YOU CAN. Our minds are a powerful thing and what people dont realize is that our words to ourselves are the most powerful thing we can do to make it through those rough times in our lives. Change your vocabulary and YOU WILL GIVE YOURSELF A STRENGTH you ALWAYS had but didnt realize it:cute: YOU ARE STRONG!!!! and WE are HERE for YOU!!!!!! XXXXXXXXXXXXXXX