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View Full Version : hi everyone, i need answers.



pjreeses
08-12-2009, 05:56 PM
i have not been diagnosed with lupus yet. i have been to so many doctors, so many visits. but it seems as though they only want to treat the symptoms and not find the cause or causes of them. i became so fed up with it that i just quit going and quit trying to find answers. about a year ago my last doctor put me on cymbalta to treat depression. i am depressed but she thought it would ease my severe fatigue. it didn't. she added zoloft, i felt worse. then i found out that taking the max dose of both meds was slowly killing me. it turns out that they both work the same way and was causing an overdose of seritonin. i quit taking both, and stoped seeing my doctor.

for the last ten years i have had these symptoms and conditions that sometimes seem to last anywhere from a few days to years and then disappear as suddenly as they began. some seem to come back later and some never occur again. a there has been no logical explaination, no diagnosis for any of it. and i have never had anyone suggest lupus.

10 years ago we started trying for a baby. i got pregnant but miscarried in first trimester. a year later we tried again. got pregnant but found out it was ectopic. doctors had to remove it. we kept trying i kept losing one after another. 7 all together. last time 3 years ago, another ectopic opposite side. my tube ruptured. i had emergency surgery. i almost bleed to death. i have not been able to get pregnant since.

several years ago my hair started falling out. not just thinning, i'm talking 50% of my hair fell out in patches. it grew back, but it still falls out now and then in quarter to dime sized patches. i have had 3 recent occurances. a short time later i had this small rash on the bottom of my foot. it looked a little like ringworm. so the doctor treated it for that. but the treatment was not successfull. he didn't know what to make of it. diagnosed it as dermatitis. eventually it went away on its own. a couple of years later it came back. this time on my hands and feet. i had sores covering my fingers, the backs of my hands, even the palms. both palms were completly covered. the soles of my feet were covered as well. it looked like i stuck them in a bucket of poison ivy. again dermatitis was the diagnosis. but we could find nothing that seemed to cause it. i changed everything from laundery detergent to bath soap. nothing helped. finally 2 rounds of steriods was the only relief. it came back several months later but not as severe.

i have had fatigue off and on for the last ten years. more on than off. also visual disturbances that come and go. mainly pain and blurred vision but also trouble focusing and dry eyes. eye doctor said 20/20 vision. aches and pains more often than not. low back pain for more than a year now. various stomach probelms including ibs and cronic diarrea. but it seems it lasts for months and then disappears. then comes back months later. there are other symptoms also. one doc said that my symptoms sound really close to fibromyalgia but without the pressure points.

this is probably boring some of you reading this. i'm just going on and on. sorry just trying to get most of it out there. ok, so the last 2 months or so new symptoms like joint pain. not just arthitis type pain but like a comination of that and tendonitis. first in my elbows now also in my left knee and right shoulder. also my left ankle started to swell before that. then both ankles. off and on. now the last week or so the tip of my tongue is sore. feels like i burned it but i haven't. please help!!!!!!!! if this sounds familar to anybody please comment. thx

rob
08-12-2009, 06:12 PM
Hi Pjreeses,

My name is Rob, and I was diagnosed with Systemic Lupus in 2004. I am sorry you are having to endure all of these terrible problems and symptoms. Much of what you talk about is very familiar to me. I had terrible symptoms of fatigue, joint pain, odd rashes, mouth sores, the list goes on and on. One day I woke up to find two quarter sized patches of hair missing on the back of my head. My barber said it was Alopecia Arreatta. It eventually grew back, but the word Alopecia is what finally made the mystery end, and all of my constant problems suddenly make sense. I was diagnosed with SLE.

From what you have talked about, I think Lupus could be a possibility for you. Are you seeing a Rheumotologist? They are generally the specialist who makes the Lupus diagnosis. I'm curious, do you happen to notice if your various symptoms get worse after being in the sun? UV exposure can cause what we call a "lupus flare". Your symptoms get worse suddenly, or seem to appear out of nowhere.

We have some people with tons of experience here, so lets see what some of our other members have to say. I hope we can help you find the answers you need. Welcome to our group, and please make yourself at home.

Rob

Angel Oliver
08-12-2009, 06:24 PM
Hello and welcome,

And no way is that post boring.I relate to most of it and send out gentle hugs to you.I too am going through the ''fight'' to find out the cause.My advice is..KEEP FIGHTING''. I so want to give up lie down n sleep forever.But you know,after todays appointment its given me the madness now to prove him wrong.I too swell,had hair loss,joint pain n swelling,oh i could go on..well i usually do lol,but honestly just keep posting here and gather info and gain the courage to keep fighting until you get the answers you need.You are sick.Youve been through so much.Just watch as members identify with you.Its so frustrating.You are not alone.

love n hugs
Amanda.xxxxxxxx:valentine2:

P.s im the one who loves chocolate!

pjreeses
08-13-2009, 10:15 AM
no i haven't noticed anything related to sun exposure. i worked outside for 3 years at a local lowe's home improvement. i did notice once that direct exposure to my face while in a tanning bed causes impetigo( i think thats the right word). its like a giant cluster of fever blisters around the mouth area. i had one that covered half my chin one day after tanning. so maybe just artificial uv light. i have been diagnosed with alopecia. what does a rheumotolgist do?

pjreeses
08-13-2009, 10:48 AM
angel, thank you for your support. here we can get though things together. share our experiences. 2 days ago i didn't even know that this forum existed. i didn't know what lupus was. i decided to type "unexplained joint pain" into my browser. this website pops up on the screen along with about a million other websites. i scrolled thourgh a few pages and then the word lupus caught my eye. i thought to myself, why is this here? what does a immune disorder have to do with joint pain? i was curious so i opened it. i was up for hours reading all the posts from people like you. i realized that i have more in common with people here than anyone else i know. finally, instead of feeling alone, scared, and confused. i feel a sense of renewed hope that i will get a diagnosis. it feels so good to read someone reply "i know what you're going through". my husband thinks most of it is in my head. he's tired of hearing about how bad i feel. he thinks i'm a hypochondriac. sometimes its so frustrating that i want to pull my hair out(before it falls out) but then coming here is like a little ray of sunshine.

Angel Oliver
08-13-2009, 10:58 AM
Well im glad you found us cause you will find many so called hypo's :) im number one..except we are not,its just how people make us feel ''that'' look you get.So we will learn get over this,but it takes time.Because as people WE know our bodies,we hurt,we ache,we dont live but exist.Just keep posting n reading,we do understand you cause we are where you are right now.You found a great site as all the members here are so caring n compassionate its lovely.We all have foggy heads,cry,laugh together,so dont be afraid of saying anything...we will support you.

Love
Amanda.xxxxxxxx

debbie-b
08-13-2009, 11:55 AM
I agree with Angela and Rob, you will learn, that most of the people here share the same problems you are having, many have been called hypos, but you know what, who cares what they think. We all know that we have all these symptoms and I for one don't care if people believe me and say " but you look so good". My husband knows how bad I feel, almost every day and I think your husband will change his mind, ones he knows all there is to know. You really can't blame him for not understanding, we barely do and we live this way, every day.
Another thing you need to know about this site, you will be boring to anybody here, because WE DO UNDERSTAND. You have been through alot, I have all the problems you are having, except for all the miscarriages you have had, which I am very sorry about. :cry3:
We have all these nice members here, that are helpful and compassionate. So whenever you feel down, come here and tell us, we will be here for you.

Debbie

PJT06
08-14-2009, 08:20 AM
hi pjreeses

My name is Jaclyn, and I have only recently been diagnosed with Lupus. Reading your story moved me to tears..
I am very sorry to hear about your past years, in many ways I understand fully what you are going through, and what you've been through. If I can say one thing it would be that there is always hope. I have been sick for many years and they only diagnosed me 5 days prior to my 32nd birthday. Please keep fighting and asking question, and going back to doctors...
Your not alone, I too am a nutter!!! Its not in your head, I too thought that many a time, but its not mate it real.
I appologise know if this dosen't make too much sense, me being a West Aussie, and a bunch of time difference ( 11.30pm here) makes me a bit tired.
A warm friendly hug from me
Jaclyn
XXXXXXXXx

rob
08-14-2009, 10:19 AM
angel, thank you for your support. here we can get though things together. share our experiences. 2 days ago i didn't even know that this forum existed. i didn't know what lupus was. i decided to type "unexplained joint pain" into my browser. this website pops up on the screen along with about a million other websites. i scrolled thourgh a few pages and then the word lupus caught my eye. i thought to myself, why is this here? what does a immune disorder have to do with joint pain? i was curious so i opened it. i was up for hours reading all the posts from people like you. i realized that i have more in common with people here than anyone else i know. finally, instead of feeling alone, scared, and confused. i feel a sense of renewed hope that i will get a diagnosis. it feels so good to read someone reply "i know what you're going through". my husband thinks most of it is in my head. he's tired of hearing about how bad i feel. he thinks i'm a hypochondriac. sometimes its so frustrating that i want to pull my hair out(before it falls out) but then coming here is like a little ray of sunshine.

I'm glad you found us too! In regards to what a Rheumotologist does, they will do various tests in order to see if you meet the diagnostic criteria for Lupus, or possibly for some other condition. If you look at the top of each section of the website, you will find helpful articles about getting a diagnosis, diagnostic criteria, etc. They are written in laymen terms so they are easy to understand. I recommend that you have a look and see if the info helps.

As far as your husband, and others who are saying it's all in your head, just show them My Avatar- that little picture that appears next to my name. Being told it's all in your head is a B.S. Copout. You have real symptoms, you need real answers. I would see your regular Dr. and tell him/her you need to be referred to a Rheumotologist. Write down a list of all of your symptoms, their frequency, and intensity. Go to the Rheumo and tell them you think you may have Lupus, and need to be evaluated.

Notice I'm not suggesting you "ask" this of your Dr. or a Rheumo, you have to be firm and hold your ground. You are doing a very good thing by educating yourself as to the possibilities and causes of your symptoms. An educated patient can be their own advocate. Please feel free tell ask any questions you need to ask here. We'll do all we can to help.

Rob

pjreeses
08-14-2009, 11:11 AM
rob, thank you for the info. can you give me a ballpark figure of how much money i need to save up for these tests? i'm only asking because i was recently fired from a good paying job due to excessive absenses because of my symptoms. i'm now working at walmart making minimum wage just to make ends meet. i have no insurance.

rob
08-14-2009, 12:04 PM
rob, thank you for the info. can you give me a ballpark figure of how much money i need to save up for these tests? i'm only asking because i was recently fired from a good paying job due to excessive absenses because of my symptoms. i'm now working at walmart making minimum wage just to make ends meet. i have no insurance.

I was fully insured at the time, so I'm not sure what it all would cost. Anyone else here have any info?

Thanks,

Rob

Saysusie
08-16-2009, 12:42 PM
It is very difficult to answer your questions because each lab has it's own criteria for costs. I can tell you that several studies have suggested that the average annual cost to provide medical treatment for a person with lupus is $6,000 - $10,000. However, for some lupus patients, medical costs may exceed several thousand dollars every month due to medications, doctor's visits and hospital admissions.
Many people with lupus receive their health care through a government sponsored program such as Medicare or Medicaid. It might be in your interest, since you are unemployed, to see if you qualify for medicaid. It is rather difficult to qualify, so I am going to provide you with some brief information about it to help you in making a decision. Remember, this is general information..each state has their own criteria and this is what I found for Arkansas:

Medicaid is a program that helps pay for medically necessary medical services for needy and low-income persons. It uses state and federal government money. The Department of Human Services (DHS) runs the Medicaid program in Arkansas. Medicaid and Medicare are different programs. Medicare is federal health insurance. It pays for medical services for aged and disabled persons.

To apply for Medicaid, go to the Department of Human Services (DHS) office in the county where you live. If you are not able to go there, you may have a relative or a friend apply for you. You must sign an application form and give certain information about yourself and your family. The county office will determine your eligibility.

You can print out a Family Medicaid Application from the DHS Web site at www.arkansas.gov/dhs/dco (http://www.arkansas.gov/dhs/dco). When you click the link, the site opens in a new window. To return to this page, close the window.

When you go to the county office to apply for Medicaid, bring the following information about yourself and your family:
Birth certificate or other proof of age
Paycheck stubs
Social Security card
Letters or forms from Social Security, SSI, Veteran's Administration, or other sources that show the amount of your income
Insurance policies, including other health insurance policies
Bank books or other papers that show the amount of your assets

When you apply for Medicaid, DHS workers will explain the ConnectCare program and ask you to select your primary care physician.

Important points about Medicaid
Medicaid will not make payments to you but will pay doctors, hospitals, and other health care providers who are enrolled in the Medicaid program.
Medicaid can help pay some of your medical bills, but not always all of them. If you're an adult on Medicaid, you will have to pay for part of your medical care.
Doctors do not have to bill Medicaid, even if they are Medicaid providers. Before you get a service or treatment, ask if it will be billed to Medicaid. If it will not, the doctor has to tell you. If you still want the treatment, you may have to pay for it yourself. Or, you can find another doctor who will bill Medicaid.
Most people must choose a "primary care physician," or PCP. Your PCP is the doctor who is in charge of your health care.
You will be given a card to show your doctor or health care provider. Take care of your card, and keep it with you at all times. It makes it easier to get the care you need.
Do not let others use your card, or you will lose it, and might even go to jail!


Who can get full Medicaid benefits?

It depends on how much money you make, how much property you own, your age, and your situation. Most people who can get Medicaid are in one of these groups:
Age 65 and older
Under age 19
Blind
Disabled
Pregnant
The parent or the relative who is caretaker of a child with an absent, disabled, or unemployed parent
Living in a nursing home
Under age 21 and in foster care
In medical need of certain home- and community-based services
Have breast or cervical cancer
Disabled, including working disabled

If you can't get full Medicaid benefits, Here is a program that may be of help to you:

Medicaid Spend-Down - Medicaid Spend-Down

If you are hurt or sick and need a lot of care, you might be able to get temporary help from Medicaid even if you make too much money to get regular Medicaid.
To qualify for Medicaid Spend-Down, you must be spending a large part of your money on medical care.
You have to re-enroll in Medicaid Spend-Down every three months.
Contact the DHS (Department of Human Services) office in your county for details.

I hope that this has been of some help to you.

Peace and Blessings
Namaste
Saysusie

crmj1183
08-16-2009, 08:36 PM
Hey pjreeses,

It doesnt sound like you have lupus, it kinda of sounds like fibro, but then it doesnt when u mentioned the dermatitis, hmmmmmm. When was the last time you made an appt to see a rheumy??? Im sorry you have been having such a tough time with the pregnancies and the depression, dont give up on concieving Im sure it will happen. I hope you dont have lupus or anyhting else for that matter.

Chriss, Hugs

pjreeses
08-17-2009, 12:44 PM
i've been tested for fibro but i don't have the pressure points or enough of the symptoms. the alopecia and the dermatitis make me think it's lupus. plus every doctor i've beeen to so far don't know what to diagnose it as. they keep giving me an unkown diagnosis. i think that not many of them know much about lupus or other diseases like it.

mountaindreamer
08-17-2009, 01:22 PM
hi pjreese,

diagnosis of an auto immune disease can be extremely difficult. There are so many symptoms that cross over between the diseases, it takes some very specific criteria for a diagnosis. It took me 13 years before my dr. was able to make the precise decision even though my ANA always tested positive. I have tremendous faith in her, and i appreciate her determination to "get it right." Once I educated myself on symptoms, then i was able to provide more accurate information, and she was subsequently able to make the diagnosis. For example, when she asked me about mouth sores, i always reponded with no because i envisioned painful open sores in my mouth....i did not understand that the little raised spots in my mouth were sores because they did not hurt.

If you will browse around at some of the threads here, you will find that many of the symptoms vary and you might find some symptoms that you have that you did not realize were symptoms....this will help your dr.

So, please hang in there, you can change drs. if you don't feel the connection, and this is certainly your option. It seems to me that the people who get quick diagnosis have a major medical occurrence that leads to the drs. to lupus. Those of us who have learned to get along each day with the pain, fatigue, etc. seem to have to wait.

once again, lupus just won't give us a break.