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Saysusie
01-19-2004, 07:58 PM
Dear Members;
The research and/or answers provided on this forum are not meant to be used as a substitute for medical advice. The information provided and presented is for your education and your support. This can be a lonely and misunderstood disease and we want to help you to lessen those feelings.
We are here to help you in any way that we can and to offer each of you as much support as we can for as long as you need it.
But, please see your personal physician for professional evaluation of your individual cases!

Peace and Blessings To You All
Saysusie

mamaj
06-01-2008, 10:03 AM
I have been sent from doctor to doctor for aray of systoms and illnesses. I finally started doing some of my own research. I was not raised by my bio-mom, so I found her and to found out the medical history. The usual stuff, except for Lupus. I never heard of it. I have been reading about it. So many things seem to make sense. I have yet another doctor's appointment tomorrow ( a new doctor I have not seen). I have been at the same library in Pearl, MS for 4years. Sick off and on, but, since last year about Nov. I have been real bad, even worse since Feb. 08 I am now down to the last 40 hrs of the family medical leave to secure my job. I told my boss' my theory of Lupus. You know that roll of the eyes look and she just doesn't want to work look. I'm sick of; it is all in your head, being a hydrocondric(spelling), lazy, over reacting, just go to the ER and get a shot, (but when you go, they think all you are is a drug seeking adict)
My husband is a really good guy, married 30 years, but even he has limits, drs, er rooms, hospitals, no money for bills, drugs for breakfast, lunch, dinner and bedtime. He says, "no wonder I'm sick!"

So, how does this work? You just get on and go where to actually post to talk to everyone and how? I have never done this before.

Thanks,
mamaj

Saysusie
06-02-2008, 08:47 PM
Mamaj;
I am sorry to hear that you are having so many difficulties. This is a place filled with caring, understanding, informative and supportive people. We are here to help you in any way that we can and as much as we can. Welcome to our family :lol:

With reference to posting; You can browse through all of the forums here and post in whichever forum you feel fits your subject. If your subject is general, then you can post in "Lauri's Lounge". That is usually the first place that most people go to until they get the hang of things.
Regardless of where you post your questions, comments, concerns, etc., someone will respond because there is always someone here! You are never alone when you are here with us!

Peace and Blessings
Saysusie

mamaj
06-03-2008, 04:56 AM
Thanks for the reply.

I went to yet another doctor yesterday. My husband was not going to go with me at first, but I really did not feel up to driving. So he came along, and instead of staying in the waiting room came back with me. While I made the list of medicines and sugeries and doctors seen , etc; the doctors cuts me off mid-sentence and says,"So Danny, when she gets this way, what happen next?" I wanted to scream "HELLO!!

But, in the end he said I needed a Neurologist. I said I had been trying to get in to see one and would he help. NO. Get your records and hand deliver them. I asked him if he had heard of Lupus and he said he did not think that was my problem.

My husband went back to work, I came home took 2 lorocet which barely makes a dent and laid down.

I am going to lose my job which I love. I was told they will make the decesion for me if I don't make the decesion for myself. I don't know if it is better to let them fire me or just resign; either way I lose my medical insurance; no insurance, no medicine.

I need to get ready for work.

mamaj

Oluwa
06-03-2008, 07:22 AM
MamaJ...

City or state library? Apply for disability insurance through worker's compersation, LNI....disablity. I know very little about compensation but I do believe if a job aggravates a pre-condition you are eligible for worker's comp.


I googled and this is what I found....maybe it will help financially. A start to help you feel you have some control over what you can get financially.

Heath topic, questions, related to doctors, medicine.....see you in the our topics listed in the forum index...

Keep looking for your wellness,
Oluwa


Follow the links..

http://www.ssa.gov/d&s1.htm

http://www.mwcc.state.ms.us/

http://www.dom.state.ms.us/Eligibility/eligibility.html

http://www.dom.state.ms.us/Eligibility/QualifyingForMedicaid72005.pdf

http://www.dom.state.ms.us/03_12_07_Eligibility_P5_Final_compiled.pdf

http://www.dom.state.ms.us/Eligibility/ChipApp03182005.pdf

http://www.mwcc.state.ms.us/INFO/wcfacts.pdf

mamaj
06-04-2008, 04:17 AM
Thanks for the links.

My husband is convinced I have Multiple Chemical Sensitivity (MCS).
I saw my GP yesterday and told him we need to do something before I lose my insurance and ask for a pain shot. He had blood and urine labs done; and wrote me an excuse for work that I may not be able to handle an 8 hour day. My boss is still a "B----". I called her and told her I would be at work this morning. Which I better go start getting ready; it takes longer these days.

mamaj

purple_butterfly
12-01-2008, 04:52 PM
Hi mamj;
I read your postings, and I may have missed it, what kind of symptoms are you having?
I had symptoms for almost 3 years before being diagnosed with Lupus. I got everything from fibromyalgia, to chronic fatigue to depression. Keep seeing doctors and searching for answers.

KathyW1958
12-01-2008, 06:11 PM
Hi Mamaj,
First of all welcome to the site. There are a lot of good folks that come in here and with a vast wealth of information. My name is Kathy. I have SLE, Lupus and have had it for some 44 years or so according to my Rheumatologist. It sounds like you are going through a lot of what I went through before I finally got diagnosed with Lupus. I am serious starting in my early mid 20's I started having severe joint pain and severe headaches and boy I would pass out from the sun and did so on numerous occassions. I had bad bouts of Costalchondritis and Pleuresy and just really bad things happening. I went to several different doctors to continously be told that there was nothing wrog with me and that I was stressing needlessly. I hit the ER on numerous occasions due to the pain of headaches, and joints and back and costalchondritis. I was told several times that I was just looking for narcotics etc. It was terrible to say the very least.

What are all of your symptoms? The Lupus Foundation has listed 11 different criteria that they use to determine if you have Lupus. You have to meet at least 4 of the criteria that they have listed. Have you looked at the The American Lupus Foundation website to see what they list for the criteria to determine if you have Lupus?

Have you seen a Rheumatologist? I think that you need to see one and ask them to test you for Lupus. Take a list of all of your symptoms and any lab results that you have to the office and let the doctor go over them. Please keep posting as we are here for you and want to help you any way that we can.

Hugs,
Kathy

ana1.40
01-04-2009, 09:08 AM
wow Kathy, i really feel for you, all those years suffering with this disease. How are you now? May i ask how old are you? I use to always think that a lupus patient dont normally live t hat long, and that what scares the crap out of me, and not knowing if i have it. I guess this would explain all these costrochondritis flares and back aches. How on earth do we get these type of diseases? I have no familt history of it.

I really like this site, you guys so serious about all this and very very informative..thnak god i found you all! :)

ana1.40
07-28-2009, 06:00 PM
Hi goodnight to all....Its been quite awhile since i have been in here and i am still going through 'the question mark phase with my doctors.

About two mths ago..i went to another rheumy and he told me that he isnt gettin enough evidence to support the possibility of lupus but he still put that question mark next to it. :(

He did however told me that alot of people may have a positive ANA and have a condition called MCS - Multiple Chemical Sensitivity, where the immune system is very allergic to almost anything and its quite hard to target what are the causes.

What he did however was put me on PRIMROSE OIL for 3 mths to see if it would help boost my immune system....sigh...so far it did help a little with the back pains ( i am assuming its that ,cause primrose oil do help with inflamation)....all my other symptoms still exists though! :) I hate howmy hair keeps falling of..it scares me....i am on some calcium to see if this helps.....what to do about the hair anyone????

I have another appointment in August...hope there is more he can help me with....

mountaindreamer
07-28-2009, 07:13 PM
hi ana1.40,

welcome back, so sorry you are struggling with a diagnosis. I hope your new dr. can put the pieces together so that you can get treatment that helps you feel better.

i have seen where other members have discussed multiple chemical sensitivity syndrome...you might want to do a subject search and read what others have said.

good luck, keep us posted on what is going on.

kemar
10-27-2010, 05:47 AM
am trying to find out if there is a way were i can get help with my medication its costly and to see a doc to do the necessary check ups cost a lot as well.my situation is bad at this time cant really afford meds or to see a doc i don't know to do at this point just feel like giving up its really hard.

rob
10-27-2010, 06:58 AM
am trying to find out if there is a way were i can get help with my medication its costly and to see a doc to do the necessary check ups cost a lot as well.my situation is bad at this time cant really afford meds or to see a doc i don't know to do at this point just feel like giving up its really hard.

Hello Kemar,

Welcome to WHL! What sort of meds are you taking? Do you have Lupus? I hope we can help.

Rob

tgal
10-28-2010, 08:49 PM
Hi Kemar,

I can't help with the doctor part but I can tell you that each of the pharmaceutical companies have programs that help people that can't afford their meds. Find out who makes your medicine and get in touch with the company (their is usually a link on their website) and they will give you papers to have your doctor and you to fill out. Once approved you will get your medicines sent to you for a year for free or a reduced price depending on your income.

Hope this helped!

lovedbyHim
06-01-2011, 05:29 AM
Hi I am not sure where to post this question so I will try here. Is it normanl to have symptoms such as nausea, pain in upper abdomen, biliruban and protein in urine and then just have it all disappear?

lovedbyHim
06-01-2011, 06:40 AM
Hi Kemar, I am a newbie here too, so I will hopefully give you sound advice. I live In Pennsylvania in the USA. We have medical assistance programs where you can go to the Dept of welfare and apply. If your doctor says that you are disabled you can qualify for medical assistance that pays for scripts. Folks on this forum are from all over the world so it is hard to know how to advise. I have a friend who goes straight to the drug companies by going on line and applying. He gets his meds at a very low price. Hope this helps.

SandyR
06-01-2011, 06:44 AM
Hi I am not sure where to post this question so I will try here. Is it normanl to have symptoms such as nausea, pain in upper abdomen, biliruban and protein in urine and then just have it all disappear?

The only thing really truly normal about our symptoms is that there is no "normal" list of symptoms to cover everyone. It's more like a buffet than a prix fixe.

luv1only63
06-07-2011, 03:21 PM
i am new to this site and have learned so much from reading the posts. i have a couple of questions, 1. how is a flare defined? and i now have scaly dry patches on my ankles, legs and feet. could this be associated with lupus?

tgal
06-07-2011, 05:58 PM
i am new to this site and have learned so much from reading the posts. i have a couple of questions, 1. how is a flare defined? and i now have scaly dry patches on my ankles, legs and feet. could this be associated with lupus?

Hi luv1! First let me welcome you to WHL! I am so glad that you decided to join our family!
.
1. How is a flare defined? This is kind of hard to explain. Basically a flare is a time when the disease is active. For most of us there is a "new normal" that we live with. It isn't a remission period but it is a place where are body is doing pretty good considering. A flare is when the disease goes active. It is a time when the symptoms really stand out. It is a time when the fatigue, the brain fog, the rashes and whatever symptoms you have begin to show up. It is a time when you really feel like you have Lupus (or whatever AI disease that you have).

2. It is absolutely possible that the dry patches on your limbs could be associated with the Lupus. Many of us have Lupus "rashes" but they are kind of hard to explain because there are so many different kinds of them! You might want to go see a dermatologist so they can take samples and tell you exactly what they are!

Once again let me welcome you to WHL! We are glad to have you as part of our family!!

luv1only63
06-07-2011, 06:36 PM
whew, i found it. thanks. i guess i am still experiencing a flare. it has been over a month since i was given melixicam and now plaquenil. the doc also gave me 2 weeks of predisone but i am not taking it. i am diabetic and have hbp and the steroids causes both to hit the roof. i am always exhausted, severe pain in my lower back, swelling in my abdomen and ankles, nausea, no appetite, headaches, etc. i do my best to shower dress and look my best everyday and my family and friends always say i don't look sick. i have given them written literature and asked them to read it but they still think i am just lazy and don't want to work. that is so far from the truth. this house is driving me nuts and i am not able to much of anything but take meds, sleep, etc. is there any hope? i am the 2nd person in my family to have lupus. the first was a niece that ended up on dialysis and passed on at age 25
i am also taking anti depression and antil anxiety med, i am so drugged, that the "brain fog" is a normal day for me. i do appreicate this site and thank you.

tgal
06-07-2011, 06:49 PM
whew, i found it. thanks. i guess i am still experiencing a flare. it has been over a month since i was given melixicam and now plaquenil. the doc also gave me 2 weeks of predisone but i am not taking it. i am diabetic and have hbp and the steroids causes both to hit the roof. i am always exhausted, severe pain in my lower back, swelling in my abdomen and ankles, nausea, no appetite, headaches, etc. i do my best to shower dress and look my best everyday and my family and friends always say i don't look sick. i have given them written literature and asked them to read it but they still think i am just lazy and don't want to work. that is so far from the truth. this house is driving me nuts and i am not able to much of anything but take meds, sleep, etc. is there any hope? i am the 2nd person in my family to have lupus. the first was a niece that ended up on dialysis and passed on at age 25
i am also taking anti depression and antil anxiety med, i am so drugged, that the "brain fog" is a normal day for me. i do appreicate this site and thank you.

The first thing that you need to know is that plaquenil often takes 3 to 5 months to really work. It is a slow thing but it helps many. I also understand you being worried about the steroids but you might really want to talk to your doctor because steroids is one of the front line meds to help knock out a flare. He gave you 2 weeks worth instead of starting you on a daily dose most likely due to the fact that you are diabetic. Take it from someone that "self medicates" way too often (I know better then the doctors). It seldom ends well.

The fact that we "don't look sick" is a big problem for many. Family and friends seldom "get it" but there is a wonderful story that many of us have used to try and explain this disease. It is called The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/) and can be found at the link provided.

I am really glad that you decided to join the WHL family! Please make yourself at home and I look forward to getting to know you!

lovedbyHim
06-07-2011, 07:06 PM
Hello luv! Welcome to a wonderful group of people! I too have a rough time navigating on a forum, but slowly I am getting it(grin). Brain fog makes it hard. First of all tgal said it very well. My flairs kick my butt! I am tired most of the time now. My new norm I guess. It took me years of weird symptoms coming and going with co-workers making fun of me and family misunderstanding. Then I grew a large mass in my lymph system that woke people up. I started reading and documenting everything. I was finally diagnosed with lupus and my thyroid was a mess from the lupus. I slowly began to feel much better with meds. I'm now on 7 and I have a good life. Oh I still get sick, but the meds do help me. I hope you find the answers you seek and the validation and support from all of us who "get it" (((hugs)).

luv1only63
06-08-2011, 04:40 PM
[QUOTE=tgal;88252]The first thing that you need to know is that plaquenil often takes 3 to 5 months to really work. It is a slow thing but it helps many. I also understand you being worried about the steroids but you might really want to talk to your doctor because steroids is one of the front line meds to help knock out a flare. He gave you 2 weeks worth instead of starting you on a daily dose most likely due to the fact that you are diabetic. Take it from someone that "self medicates" way too often (I know better then the doctors). It seldom ends well.

The fact that we "don't look sick" is a big problem for many. Family and friends seldom "get it" but there is a wonderful story that many of us have used to try and explain this disease. It is called The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/) and can be found at the link provided.

I am really glad that you decided to join the WHL family!

Not sure if I am responding correctly. went to my PCP today. not only is the rash on my legs and feet but now i have the butterfly rash on my face. I did begin taking the predisone today and hopefully will feel better in a few days. but today is not a good day for me, running a fever, severely fatigue, no appetite, lost 10 pounds in the last 2 weeks. fortunately i have a great personal relationship with my PCP. she gave me a bunch of samples and arranged for me to get other meds at a discount. in 2010 i spent $3,000 co-pay for meds.

hope everyone else is feeling better today, i was told any day above ground is a good day. so i am trying to encourage myself.

luv1only63
06-08-2011, 04:41 PM
Not sure if I am responding correctly. went to my PCP today. not only is the rash on my legs and feet but now i have the butterfly rash on my face. I did begin taking the predisone today and hopefully will feel better in a few days. but today is not a good day for me, running a fever, severely fatigue, no appetite, lost 10 pounds in the last 2 weeks. fortunately i have a great personal relationship with my PCP. she gave me a bunch of samples and arranged for me to get other meds at a discount. in 2010 i spent $3,000 co-pay for meds.

hope everyone else is feeling better today, i was told any day above ground is a good day. so i am trying to encourage myself.

Lis
08-16-2011, 02:57 AM
Hui Im Lisa

I just recently being diagnose with sjogren's , i' ve read in the Internet that there are some new medication have been approve with FDA with low side effect.
Is that true? Thank you for your info
My symptoms are 2 year ago I started to develop mouth ulcers they are recurrent, and than about a year ago I have joint paint especially in the hand, but I still can do activity, I cut my tennis once I develop the join pain, my ear have tinitus, I check blood test my Esr seems normal, except anti ro 52 is pos, Ana also neg. Rheumatologist seems diagnosed me based on my symptoms. I'm confuse.
I'm 35 years of age.
I'm afraid to start the medication.

steve.b
08-16-2011, 03:08 AM
hi lisa,
welcome to whl.
for a rhuemy to diagnose you on symptoms, not just blood tests is good.

check out some of the other threads.
there is one that lists the diagnosis criteria for lupus.
you need to have 4 of the 11 possibilities to get a diagnosis.
blood tests is just 1 of them.

many of us are not happy taking medications, but we need to.
my lupus is being kept nicely in check by my medication, without it i would be lucky to be living.
i had 4 major organs involved with lupus, i need my meds.

again welcome.