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1

Hello - I hope you are having a symptom free day. I have a an issue I would appreciate thoughts on. Ever since my symptoms have become quite aggressive I have been trying to find answers.

I have mentioned a few times before than I am ANA negative however I have very high Thyroid Antibodies, high Sed rate, among a few other things.

My Rhuematologist asked me to get as much family back ground as I could.. My mother was not at all helpful to me despite her sister dying at 52. I guess she cannot deal with the thought she may have 'given' me something?

Just recently my mother told me that when she was pregnant with me the doctor gave her a small white pill. She doesn't remember the name of it and she worried it would cause me harm, but she was extremely sick.

Over the past three years it seems that my symptoms are escalating. Due to the Negative ANA doctors do not seem to believe me and I was recently told I needed to see a Psychiatrist

After spending a week in hospital with Pneumonia, low abdomenal hemorrhage and kidney issues you would think at least one Doctor would sit up and think "Well she can't fake that!", but NO! not a thing.

I'm sure everyone feels the same as me as far as not wanting or needing pity. Just a little understanding about how frustrating these symptoms are would go a long way.

I try very hard to be positive and as soon as possible I want to start an at home business. I can't hold down a regular job anymore because I cannot predict from one day to the next how I'll feel.

My younger sister and eldest daughter refuse to believe my symptoms are as bad as they are. I have never exaggerated how I feel and rarely spoke of it. My eldest daughter lives 5.5 hours away and I simply cannot manage the trip to see her and her two beautiful girls.

When my pain is very high my blood pressure can spike as well. Yesterday though when I checked it it was very low. I get more and more confused. I know how to deal with the high blood pressure but this low blood pressure is a new experience.

One thing for sure we are certainly learning a lot! A young doctor told me a few days ago that removal of the Thyroid cures Graves disease. In a way that is true however I know two people who had their Thyroid removed but sometime later developed Rheumatoid Arthritis. The Thyroid is gone but the corrupt Immune System is still there!

I guess you need to be an academic learner to become a doctor but boy have I met plenty of stupid ones LOL!.

Well if anyone would be good enough to share their story or advise me a little I would very grateful. The hospital didn't tell me why I lost a lot of blood into my lower belly. The next day I looked like I was changing race Ha ha.(no disrespect).

Warm wishes

Nic

2

HELLO,JUST BECAUSE THE BLOOD WORK SHOWS THE DISEASE IS NOT ACTIVE DOES NOT MEAN YOU DO NOT HAVE PAIN. I AM SO SORRY, I CANNOT STAY ONLINE ANYLONG.

I HAVE BLEEDING FROM MYEYES.

MANY PRAYERS AND I HOPE YOU RETURN PRAYERS TO ME AND RUSH

ALWAYS MICKEY AND RUSH

3

Hi Nic,

I would encourage you to just keep coming here for support. As different people post, I learn different and sometimes significant things I can then use to help me talk to my doctors. And don't let anyone suggest it is all in your head; this seems in my experience to be the stock answer when your symptoms have them scratching THEIR head trying to make sense of it. Be encouraged and as I often hear people say in here, don't give up!

Sharon

4

I have no answers for you except to research doctors in your general area and make an appointment with one that sounds good. Personally, I would be looking for an internist first. I will send prayers and healing thoughts your way. I am so sorry you are dealing with all this. Gentle Hugs!

5

Nic, you are very much not alone. and huge hugs.

When our bodies do a myriad of different and odd things all at once, I feel a doctor can be overwhelmed knowing where to start, much less how to help us. I was told by my neurosurgeon that perhaps my seizures, and movement disorder could be all.in my head. He then went on to say he felt my spinal issues corrected by surgery had been blamed for many of my symptoms, that other doctors had dropped the ball. I left with steam coming out of my ears, and tears down my face, glad my husband was driving.

When we as patients are big puzzles, many doctors decide to turn us away rather than use any skills they have to diagnosis. Everyone has their strengths and weaknesses. Some of the finest doctors who ever treated me had horrendous bedside manners, and others who communicated well never so much as looked at me in the exam room, but relied solely on tests. Not all doctors are great diagnosticians. And, with specialists having become the norm, it is rare to run into a doctor who gets what is going on with you if not in his or her certain field of specialty.

Because of my own experiences and struggles, I began to become the head of my own care team. I learn what is useful, and ditch the rest. I remind myself often that this is my life, and it's up to me to make it the best as possible. A doctor either sees it the same way, and is helpful, or I have no time to waste in their office again.

Everyone's experiences are different, but when it comes to chronic illness, we all have our stories to tell. I hope someone comes along who can be of more help. I learned to explore healing outside of modern western medicine, to read like crazy, and find what helps, for myself.

you are not alone! warm hugs,

Louise

6

Keep looking for a diagnosis....don't give up! Some doctors don't have a clue and you might have to keep searching for one who will listen and know what to do!

My heart and prayers are with you!

Lori

7

Hi!, Dealing with people about ,Living with Lupus is so hard!! We can’t spend time trying to make them Realize that this is happening to us, but we do! Being as normal as possible is sometimes a chanllange for us! Teaching those who can’t accept the fact we are not like the norm, is something that they have to learn-in time. Showing them that this is something real in your life, and for you to function daily is a mission to the best of your ability , cause problems for you-we want to be free of this Lupus stuff But it is not going to happen ,and dealing with we have to change Our whole life around,is more problems! Get them involved, give them information , take them to doctor visits with you, get on the Internet and let them see that this is for REAL. Also let them know that you are just afraid as though they are day to day.Lupus has no set time to Flare and hope that they will go through this with you, and let them know how much they Really mean to you-say to them My Love has not changed!!..Beverly L.

8

I cant help you with your search. I can say that doctors always want to shift the blame to your head, when they dont have the answers. All I can say is keep a diary of your smytoms and bumbard them with it. Make them search for answers instead of the easy answer. Are we depressed? Yal… our whole lifes have been turned upside down. I can tell you th also at at one time all of us searched for the answer, why am I sick? Something is wrong. Doctors are scientific people and onlydeal with facts and what they can prove.

9

I have a book on lupus. I kind of tricked my family into reading it. I took all the other reading material out of the bathroom except it. Lol I would be happy to mail it to you for free as long as you promise to pass it on to someone else who needs it. Just send your name and address to my page.

10

to me a high sed rate means the disease IS active.

ANA is not the lupus test, and I don't know why so many doctors are acting like it is. It never was the definite lupus test. You cna have negative ANA and have lupus, or have positive ANA and not have lupus. it's not a yes/no test. tat's why they take so many other tests AND (hopefully) track your symptoms.

MICHELE MCNEILL said:

HELLO,JUST BECAUSE THE BLOOD WORK SHOWS THE DISEASE IS NOT ACTIVE DOES NOT MEAN YOU DO NOT HAVE PAIN. I AM SO SORRY, I CANNOT STAY ONLINE ANYLONG.

I HAVE BLEEDING FROM MYEYES.

MANY PRAYERS AND I HOPE YOU RETURN PRAYERS TO ME AND RUSH

ALWAYS MICKEY AND RUSH

11

by the way reasonable doctors now agree that genetics really only are about 30% of the picture. lifestyle/ environment have more t do with illness/ wellness. that includes things such as polluted air, water, personal products, vaccines, prescriptions, pesticides, air "fresheners" (made from chemicals), stress, tainted food supply (US food is generally not that nutritious unless you really go out of your way)...

I read a great book by a biologist called "never be sick again." he says ALL diseases are caused by 2 things: toxicity and vitamin deficiency. They found people who live in tribes who are so healthy they don't have words for cancer or dementia because it never happens to any of them. They don't even get the common cold. But they live far from modern society, raise their own food, walk everywhere, have tight communities. They live to 130 years old, healthy as a horse the whole time, then die peacefully in their sleep. when tribes like these are introduced to modern conveniences like the car and processed food and cocacola, they start developing all the diseases we here in the US blame on genetics: heart disease, obesity, etc. They never had these things before, but within 6 months of the roads reaching their village, they are now ill.

So, while I do not believe we here who suffer from the diseases created by living in the very convenient comfortable USA are to BLAME for getting sick, knowing that our lifestyle has so much to do with our being ill puts us back in the driver's seat, and able to do something about it.

I may be off topic, but I just want to let your family off the hook in a way, so they don't feel like they "gave" you lupus. I went through that with my mom (her feeling guilty), and it made it really hard to communicate for a while.