HELP ITS GETTING WORSE!!!!!

[ms_brack09]

HI MY NAME IS COURTNEY I AM 17 YRS OLD AND I WAS VERY HEALTHY BEFORE I GOT SICK NOW I BEEN SICK FOR 3 MONTHS NOW AND I BEEN DEALING WITH HEADACHES,PRESSURE IN HEAD,ALSO BUZZING FEELIN IN MY HEAD,FEELS LIKE SOMETHING IS MOVING IN MY BRAIN,ALSO I FEEL DIZZY,MUSCLE ACHES,MOUTH ULCERS ALSO IN THROAT,LOST WEIGHT AND LOSS OF APPETITE,TIRED ALOT,FATIGUE ALL THE TIME,WEAK ALL THE TIME,NO ENERGY PERIOD.MY HAND ARE COLD AND CAN TURN FROM WHITE TO RED AND PURPLISH COLOR. I BEEN TO MY DOCTOR THEY GAVE ME A  ANA TEST FOR LUPUS IT CAME BACK NEGATIVE THEN I GOT WORSE I WENT TO DEKALB MEDICAL AND SHE LOOKED AT ME AND MY MOM TOLD HER ABOUT THE LUPUS RESULTS WAS NEGATIVE BUT THE DOCTOR SAYS SOMETIMES IT DOESNT SHOW UP IN BLOOD IT MAY TAKE MONTHS OR EVEN YRS FOR LUPUS TO SHOW UP.SO SHE SEND ME TO THE RHEUMATOLOGISTS AND MY APPOINTMENT IS FRIDAY WHICH I CANT WAIT THAT LONG.

SO I NEED SOME ANWSERS!!!!!!!!!!!!!!! PLEASE HELP ME!!!!

[yunyun]

I am in the same stage as you were now. I am waiting for my blood test and I donot know when to get them. I just simply donot know what to do. Did you get yours? Gook luck.

[hey3]

Hi. I am in a similar situation. I went for a free consultation  for Lasik and was told my cornea's were so scratched that there is no way. Pluggs were put in my tear ducts. I was told my eyes were much to dry and scratched for someone my age. I am 34. That is one of the first signs of RA, Lupus, and jgorens disease. The ophthomologist kept asking for other symptoms. I have none that I can put my finger on but my eyes. He sent my back to my HCP who did all of the blood work. Brack- did you have more than just the ANA done? There isn't just one test to check for autoimmune diseases. Did he do a CRP, Sed rate, Thyroid test as well? Mine all came up normal like your ANA. The Opthalmologist told me it could take 5 or so years for anything to show up on the blood work.
I hope things get better for you. Hang in there. I don't have any answers for you but have an idea of what it is like.

hey3

[mschvusangel]

Hi, I just wanted to share my experience with you guys as well.  I have previously posted on the MS forum as well.  I have had so many different symptoms that I guess the Dr.'s just think I am crazy.  I have had numbness and tingling in my arms and legs, EXTREME pressure in my head at times accompanied by dizziness, muscle cramps, extreme fatigue, joint pain in my knees, low back pain, pain in my tailbone, electric shock like sensation down the back of my neck, my face stays flushed all the time, and many others.....  I have recently begun to have a substantial increase in blood pressure (it is not always elevated, but when it goes up it ranges from 150/90-160/100) and swelling in my legs. I have been tested for thyroid disorder, Lupus, RA, and I'm sure several other tests, all of which were negative.  I had Vitamin D test done and it was extremely low, along with SED Rate and CRP levels that were elevated.  Sed Rate was 26, and CRP was 15.  1 Dr. said this was rather high, and another said it was elevated, but nothing to worry about.  I have had a complete neurological workup, and all is clear except for abnormal EEG (about 3 years ago I had EEG done and it showed focal seizures) this time it was just abnormal.   I am at a complete loss and completely fed up with doctors around here.  I have researched many different illnesses and can't come up with anything that completely matches all of my symptoms.  My family is beginning to think I am crazy, but believe me it is real, and I am SO VERY TIRED of feeling this way with no relief and no answers. Any help, comments, or suggestions would be helpful!!  Thanks for reading!!

[annmac331]

I  had many of your symptoms before I was diagnosed with  lupus in 1985, and yes, it did take a few years before the blood tests were consistently elevated.  The problem with your fingers turning white, then purple is called Raynaud's Syndrome.  It can be associated with lupus, but not necessarily.  It is not serious - just something you learn to live with.  I'm guessing some of your other symptoms - headache, etc. may be due to anxiety about your health issues. I understand your feelings, but after years of living with SLE, rheutamoid arthritis, etc. I can tell you it is not life threatening and you WILL feel better.  The symptoms occur in cycles, they are not continiual.  I think you will find that the dizziness, buzzing in your head, etc. will also lessen and disappear gradually as you focus less on how you feel - impossible now, I realize, but over time it will happen. Good luck, everyone, with your tests.  Try not to worry too much...

[princess73]

It is so reassuring to hear others that are in similar situations. I am undiagnosed, with possible fibromyalgia diagnosis. I have had many of the same symptoms that you all mention. My IBS started several years ago and last year my arms would ache when my IBS acted up. In Oct. 2007, I started having severe pain and fatigue, along with other symptoms. My ANA and sed rate have increased from 10/07 to now. I have tried every med except narcotics, and nothing has worked. I go back to my rheumatologist 2/18, so the waiting game continues. Let me know how you all make out. You are all in my prayers.

[Gina52]

Hi annmac, you're the first one who gives me some hope. Since my daughter was told maybe she has Lupus.. I search about it I found out this is a very bad disease. I can't sleep and having a day without crying knowing my daughter has this disease and can't do nothing for her. I come here everyday to see how others copy with the disease and how they feel. I got scared every day until now when I saw your comment. My question is everybody who has Lupus can live a normal life or depends? When you have flares you take medications right the way or flares comes and goes and is no need for medications? In other words my daughter tries to stay away from medications and deal with knees pain because she said the medications have side effects too.She is only 25 y/o and she doesn't have kids yet. Can she have healthy kids?  Take care.

[annmac331]

Hi - I just saw your message.  I'm glad you feel better!  I have had a lot of experience with Lupus and hopefully I'll be able to help you.  I can't write right now, but I'll respond in an hour or two...

[annmac331]

I've had lupus for over 20 years and probably expeienced all of the symptoms you all mentioned at one time or another.  I, too, was really scared when this all started - and frustrated with my doctors for their inability to make a diagnosis.  It's really hard to live with these problems and not know what's wrong!  Maybe my experiences can help somebody cope a little better - I hope so.
     I started out with joint pain, etc. I had a positive ANA but other tests were normal, and they said I probably had MCTD (mixed connective tissue disease). Symptoms came and went (typical of lupus) and blood work was inconsistent - sometimes normal, sometimes abnormal - so confusing! . There's not a single test that diagnoses lupus - it's a combination of test results over time in conjunction with symptoms. Over the years I've seen a lot of doctors and  I've read a lot about autoimmune diseases - I'm no authority, but I think my experiences are pretty typical of lupus. I've had long periods of time when I felt good, interspersed with  some times when I didn't. Rarely does someone get sick and stay sick with lupus - it's cyclical.  And most people do NOT have major organ involvement!  Years ago lupus was considered dangerous and maybe even life threatening - but no longer. There are medications that can take care of just about every symptom!  And I have a pretty severe case of lupus (along with rheumatiod arthritis and many other medical problems), so I'm speaking from experience when I say - Don't panic! It's OK.  If you're like I was, you're afraid of what's going to come next - but it's not as bad as you're imagining or fearing. Really!
     I hope this is of help to someone.  Take care...
annmac331
P.S. It takes awhile for many of the medications to work, so don't judge their effectiveness too quickly.  And if one doesn't work, get your doctor to prescribe something else.  You don't have to suffer!
    

[annmac331]

Forgot to answer one of your questions - I have 3 beautiful, healthy children - so yes, your daughter can have children!

[Gina52]

I forgot to ask, Did you ever tried herbal medicine or do you know any diet that helps. Also did you took medications all the time? Any suggestions from your experience that might help? Thanks again.

[annmac331]

    I've tried glucosamine (sp?) and vitamins and vitamin supplements.  Can't say for sure whether  any of them work, because I don't know how I would have been if I hadn't taken them!  I do believe glucosamine is effective from what I've read though. I don't know of any particularly effective diets, although I'll admit that I don't eat a balanced diet and never have.  I'm sure that hasn't helped matters. And I don't know of anything special you can do to help with lupus other that eating a balanced diet, getting plenty of rest, exercising etc. that we should be doing anyway.
     Finally, I didn't take medications at first, but began to after a few years.  I now take plaquenil, plavix (APLS), synthroid, 800 mg ibuprophen, and other stuff that I don't think is directly related to lupus. Was taking imuran for awhile, but couldn't continue (liver function).  I took prednisone (steroid) for years and it works miracles while you're taking it, but you pay the price over time (have osteoporosis).  Dr. has suggested other meds but that is what I'm taking right now.
     Let me know how your daughter is doing... take care...

[princess73]

How were you diagnosed (what tests were abnormal)? Did you lose your hair or have you heard of this being a symptom? I can empathize with mschvusangel. My situation is very similar. It is nice to talk to people who know what you are going through. How can people think we are crazy, especially with abnormal tests?

[mschvusangel]

Friday I went for a routine eye exam and ended up there for over 3 hours!!!  After having my eyes dilated the Dr. found that my optic nerve has a great deal of pressure on it, and all of my blood vessels are swollen.  She has referred me back to my Neurologist to have a spinal tap done to test the pressure.  She seems to think I have pseudotumorcerebri due to excessive spinal fluid.  I'm not sure if this ties in with all the other things that have been happening to me or if it is just a start to another string of testing.  
Anyone ever heard of this??
I am beginning to swell even more all over my body, and have been on diuretics for over 4 months with no relief.
I have an appointment this afternoon with an endocrinologist about the Vitamin D issues, so maybe he can help out some.

[Gina52]

Hello there, I'm still here watch all comments posted every day and I wish more people to get involved and help each other .I just want to say Hi, hope everyone is doing well.  My daughter will go in March to see the rheumatologic doctor again and I'm sure will be more tests to confirm the first test before she will have a dx. Mean time I purchased 2 books: Lupus by Daniel J Wallace and Lupus Q&A by Robert Lahita What I find interesting is the contraceptive pills what they said has something to do with Lupus My daughter took birth control pills since 15 years old because heavy periods and pain. No one in my family as I know had Lupus but yet is not necessary someone to have it either I learn from this books, all people with Lupus at some point will be hospitalized and some wouldn't  be able to keep a job, also heaving hard time to take care of their families. That freaks me out. I just pray to God my daughter to be OK and not having this disease. Please tell me more about how you got diagnosed, you was hospitalized, do you have a job, can you take care of your family?Take care!