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Old 10-12-2009, 07:16 PM   #1
Join Date: Oct 2009
Location: United States
Posts: 2
coach23 HB User
Need Answers

Hi I am a 23 year old female.

I didn't go to the doctor for five years until recently and it feels like it was the worst mistake I have ever made. What I thought was frequent bladder infections turned out to be kidney infections. I had high levels of protein in my urine. I went from 125-108. My long, thick, shiny hair which I have always received complements about was falling out. At 22 I had never even had a pimple and put skin care as a priority in my life and now was breaking out in rashes and my skin head to toe was itching like crazy and I always thought I was burning up when people around me were content. I was referred to a kidney specialist but didn't go right away. I ended up going to a dermatologist because of my hair,scalp and skin. I had a terrible rash on my arm. It turned out to be MRSA and my scalp was infected and my skin was extremely dry. She asked me about my medical history and since I am not a big doctor kind of girl I told her I had only recently gone to a doctor and discovered the kidney issues and a few other symtoms. She told me she was concerned I had lupus and told me to go to the kidney specialist and have her run some tests that she had written down on a form. I was put on several steriods for my skin, hair, scalp, and face. I also went to a general physician to get a physical since it had been so long.

I had noticed that my once extremely patient, happy personality had changed too. I was snapping at people and my mom asked me if I had been possessed because as hard as it is to believe I have never raised my voice at anyone and I am one of those annoying people who think everything will be ok just be patient and make the best of everything. The doctor tested me for anxiety and said I had anxiety and tried to drug me up and I was not having it. My blood tests showed my liver was elevated which was unusual because I never drink. The lupus ANA test came back with nothing except a few odd numbers on a few other things but the kidney specialist told me to go see a rheumologist becuase she couldn't diagnose me with lupus even though she still strongly felt that is what was going on with me.

I didn't go and my dermatologist told me once again I should because I was on so many steroids when I took the blood test that it has been proven it could cause to effect the ANA blood work. I didn't want to go to anymore doctors and just took my prescriptions as directed and tried to get better.

Everything seemed to settle down since my last appointment with doctors in July until the end of september when my scalp started to act up again and right when I thought my hair was getting better and growing back, it started falling out again. In the few months between July and September, my knees, wrist, and back pain had become more painful and my eyes were still very dry and my allergies were at an all time high. I started treating myself and using skin products to tame my itchy skin. My anxiety had made family and boyfriend ask where the old Erica was because they couldn't handle my mood swings.

I still have been prepared to ignore the suggested diagnoses that the doctor's assumed I had because I didn;t want to believe I was sick. 9 days ago I found a lump on the right side of my neck. It doesn;t hurt and in fact I thought it might be a cyst because I had experienced a few in my pelvic area and under my arm but was always able to either pop them and squeeze them or they would go away but this lump in my neck doesn't hurt and it is not on the surface of the skin where I can squeeze it. I decided to be a crazy person and break down and google it. I was shocked when I saw worst case sceneraio it could be lymphoma. I thought no way not me.

Then tonight I had a glass of wine and I got these sharp jaw pains which I had been experiencing recently and they drive me crazy. I was like well what the hell since I am impulsively doing things I normally wouldn't I might as well see what they say about this annoying jaw pain.

It said it could be lymphoma. My eye's started to water, in 9 days two completely different issues had told me were symptoms of lymphoma. I was sure the jaw thing was because of bad wine or something or allergic to specific brand I was unaware of. I feel like at this point maybe I shouldn't ignore the lump or jaw pain. I put lymphoma symptoms and I was unhappy to discover many of the symptoms I have been going through the last 8 months.

Could this really be lymphoma? How is this possible? I can't stand a doctor telling me I have strep but now my search engine is telling me I could have cancer. I really don't want to believe it.

Can someone please tell me all these symptoms are nothing and google is just built to scare people!!!!

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Old 10-13-2009, 04:25 AM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Need Answers

Coach, to me, your only logical choice is to book appts. with those specialists. You can't know on your own what's going on. None of us can. Fearing the worst isn't in your best interests either. You could line up friends & family to accompany you, for support & courage.

There were times my drs. suspected leukemia. MS. Intestinal cancer. A brain tumor. ETC. And I'm not a "doctor kind of gal" either. Most people I know (men included) aren't! At my (much older) age, I've come to understand that life doesn't come with guarantees. But what we CAN do is grab at all available chances to do better. You've been given strong recommendations, so I really hope you grab them. Sincerely, Vee

Old 10-13-2009, 07:55 AM   #3
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Need Answers

Coach, I understand your resistance to see a specialist. Most of us on this board have seen 5 or more at some point in our lives with many many different diagnosis possibilities thrown at us. Stop searching the internet and go to the doctor where they can do tests, like CT Scans, Blood work and MRI's.

In the 5 years since I started getting sick I have been told I possibly had MS, Devic's, Lymphoma, Leukemia and a few others that I can't remember at the moment (sorry, I have CNS Lupus and my memory is really getting bad - thoughts are lost alot) I have had more MRIs CTs and Pet scans than you could imagine. But they are the only way to confirm or exclude anything.

Searching the internet is a good tool, but you cant make it your only tool. Lymphoma has alot of symptoms that are common in many other diseases. I have had several scares with it and it is entirely in the realm of possibility for me since I have been on 2 different chemotherapies for lupus. (I really find it ironic that a drug for cancer causes CANCER!! lol)

I hope you will see a doctor soon. If you have lupus the stress will only keep you feeling bad and can cause disease flares.

Take care and my thoughts are with you! I remember how frustrated and scared I was when it all started too. One thing you can rest assured of... we understand how your feel!

Old 10-13-2009, 10:02 AM   #4
Join Date: Oct 2009
Location: United States
Posts: 2
coach23 HB User
Re: Need Answers

Despite my dislike for going to the Doctor when I found out that I could be dealing with something serious like Lupus which was something I had never heard of, I did get worried and put my feelings aside and went to the doctors. I spent from april-july going to the doctor, doing blood work after blood work, I gave over 25 urine test. I got my kidney's looked at and the response I kept getting was "well this is definately something but I just can't quite figure it out yet" or even when I started getting optimistic with the Kidney Specialist that she would be the one to finally just tell me what was wrong or simply tell me nothing was wrong. She told me "the symptoms I was showing were very unusual and were obviously something that needs to be taken care of but she couldn't diagnose me with lupus until the ANA test were positive." She also I guess in an atempt to somehow relieve me, told me how it takes some people years to finally get a diagnosis of Lupus all the while being ill with the disease. I would have rathered her just tell me I was fine. She then sent me to the rheumotologist which is the doctor I never went to because I gave up.

Why should I spent hundreds and hundreds of dollars for doctors to take my blood and urine and my time and then spend 20 minutes in their office with me to tell me they can't put their finger on it or go see this other doctor they will have the answers.

I am only now worried months later because of this lump in my neck and the jaw pains. I found it very unsettling that on different occassions in a 9 day spand I got Lymphoma as a result to once jaw pains and then painless lump in my neck. I guess I was hoping someone could tell me they had the same symptoms and it was nothing or have all the same symptoms and after a while did get diagnosed so that I might be more patient going to doctors over and over again.

Old 10-13-2009, 01:16 PM   #5
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Location: USA
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goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: Need Answers

You are a very young person to be having such worries. First, I have to stress that you do need to see a specialist. One, it will ease your mind and two, you can get to the bottom of what is causing all your symptoms and receive proper treatment. Lupus is a systemic illness in some people and with proper treatment, one can live a long life. I myself have had sensitive lymph nodes all my life and even had a few biopsied through the years and they were negative for anything other than a body's response to some infection or inflammation. You stated that you have had these occur in other areas of your body and you refer to them as cysts, that you were able to express. I would go to the rheumatologist, if not only to rule out lupus, If you read the sticky posts at the top of this thread, you can see that there are several varieties of lupus and some can involve the major organs and others lesser degrees of involvement. I ask that you answer the question: Do I want to have answers to my health problems and attempt to live as normal a life as possible? If so, you will pursue the recommendations of your doctors and forget trying to self-diagnose. The internet has a vast array of medical knowledge at one's disposal but the diagnosing need to be left to the professionals. It is not always an exact science and sometimes the testing may need to be extensive but you do need to be patient as sometimes you have to rule out a lot of diseases to pinpoint exactly the cause of your problems. Please try to be patient as you work through this time. Good luck to you.

Old 10-13-2009, 05:30 PM   #6
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Join Date: Jun 2009
Location: Brielle, NJ
Posts: 221
heidiclouser HB User
Re: Need Answers

I can't disprove Google. You need to go to a doctor and right away. My daughter at 23 was diagnosed with Hodgkins Disease. She had a lump on her neck. After chemo and radiation she is cancer free and it's been 15 years. If you find out it is cancer talk to the doctor about harvesting eggs. My daughter didn't have time to do that (long story) and was infertile after treatment. Good news is that she has an adopted 5 year old daughter and are awaiting a new adoption. I know you are scared but neither lupus nor lymphoma go away and it's easier to treat earlier rather than later.

I actually have both lupus and lymphoma myself. My lymphoma is a result of the immunosuppresants I took to control my lupus. Luckily my lymphoma is chronic rather than deadly. I get regular treatments for it.

So if you have any questions don't hesitate asking me.


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