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TERI A.
06-30-2009, 08:30 PM
Hi All, I haven't posted in a while, but I have been reading the posts. I have been seeing rhuemys since Jan. 2009 and so far no diagnoses. The last visit they did a lupus panel and sent it to a research lab , no results yet. Last time the doctor said all of my blood work was normal. In Jan. my ana was 1:640 then in a month went to 1:1280. sed rate was 35. I have so many symptoms they are to long and numerous to list . I do have a red rash across my nose and cheeks that looks like a sunburn, it comesand goes. Before this year I hardly ever went to the doctor. On my taxes I did not have any lab work to turn in. I feel like a hypocondriac now. I have decided if my labs come back normal this time I am going to stop pursuing medical help and just wait it out. Sometimes I have 4 or five days were I feel great and then the aches , pains, and mouth sores return. I am also plagued with gooey eyes like pink eye,but I think it is related to all of the rest. Thay have taken about 40 vials of blood in the last 6 months and no results. I believe I have Lupus, I just have to many of the symptoms and I know its not in my mind. I'm just so tired of being sick and tired. My legs and hands have been going numb and some days the aches a so intense , then the next day I might be feeling terrific. I don't know howto make the rhuemy understand. He say my symptoms are just not consistent with any particular thing. He said he had a couple of ideas but wanted to see the labwork. I have been reading these posts for for quite some time and I am amazed when I see one of my symptoms listed. An example is someone said they had a v shaped red spot at the base of their neck that looks like a sunburn from wearing a v necked t- shirt, but it never goes away. I have the same mark and the list goes on and on. The kicker is I notice these things before I ever see the post , so I know its a real symptom. Oh well, I know how hard it is to get diagnosed and I wish everyone else going down this path a quick and easy ending to the not knowing and to feeling better. Sorry this is so long I was saving up. Teri

Leksie
06-30-2009, 08:35 PM
Maybe you should see a different rhuematologist?

TERI A.
06-30-2009, 08:41 PM
This is my second one. First one said my mouth sores could have come from a dirty glass.

Patty13637
07-01-2009, 04:44 AM
Don't give up and dont stop searching for some answers. It takes the right Dr to help. Maybe post to see if someone in your area uses a Dr they could reccomend.


Patty

Oluwa
07-01-2009, 05:46 AM
In Jan. my ana was 1:640 then in a month went to 1:1280. sed rate was 35.

These aren't normal..negative blood test results. I realize each Lab has their own ranges but with these numbers you posted they are considered positive results. A titer above 1:80 is usually considered positive.

If the ANA is positive in a person who is feeling well and in whom there are no other signs of lupus, it can be ignored but with symptoms such as yours the results should not be ignore and it should warrant further testing, investigating what ails you..know it is NOT all in your head...

A positive ANA alone is never enough to diagnose lupus. On the other hand, a negative ANA argues against lupus but does not rule out the disease completely as about 5% can have a negative ANA and still have Lupus....

However, a positive ANA test, by itself, is not proof of lupus since the test may also be positive in other connective tissue diseases, other autoimmune diseases, infection and etc....have they ruled those other things out below?



other connective tissue diseases, such as:

scleroderma
Sjogren's syndrome
rheumatoid arthritis
thyroid disease
liver disease
juvenile arthritis


individuals being treated with certain drugs, including:

procainamide
hydralazine
isoniazid
chlorpromazine


viral illnesses, such as:

infectious mononucleosis


other chronic infectious diseases, such as:

hepatitis
lepromatous leprosy
subacute bacterial endocarditis
malaria


other autoimmune diseases, including:

thyroiditis
multiple sclerosis


as many as 30-40 percent of asymptomatic first-degree relatives of people with lupus (siblings, parents, and children).



Though you don't have a diagnose..I am concern are they treating your symptoms? If Lupus was suspected it should be treated at least with the first line of defense..Plaquenil? It is good at treating..reducing the rashes, fatigue, joint pain and mouth ulcers.


Did they say you mouth sores were not ulcers?

Gooey eyes...are they dry and gritty too? Ask them to test for Sjogrens Syndrome.

My suggestion...find a different doctor. Even if it is your third one. It appears he/she doesn't know how to interpret your symptoms, your lab tests. You should ask him..."well, tell me what it isn't?" He needs to start ruling things out...and provide some form of treatment regardless of a diagnose or not. A person should not have to be in pain, have mouth sores and etc when there are treatments available.

Keep searching for your wellness...hugs.
Love,
Oluwa

mountaindreamer
07-01-2009, 09:53 AM
hi teri,

i totally agree with oluwa....something does not jive about your labs.....1:1280 is definitely positive....this is what i have registered for years, and my dr. has always said "positive ANA".

I see you live in Daytona....have you tried the Mayo Clinic in Jacksonville? I went there several years ago, and was so iimpressed with the treatment.

Don't give up....you know there is something going on with your body, and you are the only one who can keep searching for the right dr. and the right diagnosis, and the right treatment.

Also, i too am surprised that the dr. has not tried Plaquenil....so many people get recognizable relief with this med.

rob
07-01-2009, 10:08 AM
Hi Teri,

Well, it sure as heck sounds like you have Lupus to me. That whole "dirty glass" thing is just a cop-out used by intellectually lazy doctors in my opinion. You are not the first person to mention some Dr. saying that to them. I can't really add to the advice you have already been given. Seeking out a third or even fourth opinion is not uncommon. And I agree with the others that Plaquenil could definitely help you.

Like you, I knew there was something wrong with me, I just knew it. Like you, I had the same sort of symptoms, and I didn't imagine them after reading about them somewhere, they just happened, and then I learned that they could mean I have Lupus. I was diagnosed with SLE five years ago now. I take Plaquenil 200mg twice a day and it really helps. Trust your instincts, and what your body is telling you. You have real symptoms, and you deserve real solutions and answers. Don't give up on finding those answers.

Rob

Saysusie
07-01-2009, 10:17 AM
Hi Teri;
You've been given excellent information and there is not much else that I can add. I just wanted to reiterate what others have said...DON'T GIVE UP!
Your doctor says that he has a couple of ideas, but wants to wait until the blood work comes back. Unfortunately, for Lupus, this is all too common. When they tell you that your symptoms are not indicative of any one disease, they are not necessarily telling you that you don't have an illness. In fact, they are probably telling you that your symptoms, while very real and truly indicative of some auto-immune/connective tissue disorder, have not developed enough and blood work is not indicative enough to determine which auto-immune disorder you may be suffering from.
Even in this respect, you are not alone. There are many members here who are in the exact same predicament that you are. Sometimes, in these cases, doctors will tell you that you have Mixed connective tissue disorder or undifferrentiated connective tissue disease.
Mixed connective tissue disorder/disease is a term used by doctors to describe a disorder characterized by features of systemic lupus erythematosus, systemic sclerosis, and polymyositis, but having no specific symptoms of any one of these particular disorders.
Undifferentiated connective tissue disease is a condition which affects the body, the organs, the tissues, and the muscles in a number of ways, yet has not developed to the stage where doctors can easily pinpoint the specific disease.
Both conditions are chronic inflammatory autoimmune diseases, and they both involve a disorder of the body's connective tissues. With Mixed CTD, there is evidence of several different connective tissue diseases, all existing at the same time within the same body. With Undifferentiated CTD, there may be multiple conditions, related or not, but, at its base lies a connective tissue disease that has not developed to the point of being easily identified.

Also, their quandary is complicated by the fact that a person can have more than one autoimmune disorder at the same time (aka: overlapping/co-existing disorders). Examples of autoimmune (or autoimmune-related) disorders that co-exist are:
Hashimoto's thyroiditis
Pernicious anemia
Addison's disease
Type I diabetes
Rheumatoid arthritis
Systemic lupus erythematosus
Dermatomyositis
Sjogren syndrome
Lupus erythematosus
Multiple sclerosis
Myasthenia gravis
Reactive arthritis
Grave's disease
Celiac disease - sprue

So, as you can see, this can sometimes be as frustrating to the doctors as it is to us. This is the primary reason why you MUST NOT give up! Continue to educate yourself so that you know what your doctors are doing and why. Also, so that you can advocate for yourself and not allow your doctors to dismiss you or your symptoms!
Remember, we are here to help you as much as we can..but please do not stop fighting for your health!

Peace and Blessings
Namaste
Saysusie

TERI A.
07-07-2009, 08:49 PM
Thanks everyone for your advice. My next rhuemy appointment is July 28th. I will hang in there and not get discouraged, I know there are a lot of folks in the same boat as me.

Danica01
07-08-2009, 01:57 AM
Everyone has given you great advice. I was sick probably three years before I was diagnosed. It was painful, bothphysical and mental. I also had a doctor tell me he had an idea what it was but he wanted the disease to come out fully so that he could see it at its worse. I left that doctor immediatly! I still needed to be comfy in my daily life and he just wanted to play with my disease. That was the best decision I have ever made in terms of my treatment plan for my Lupus. They are also very right that if you have one autoimmune disease they probably brought a friend with them and this can confuse doctors and actually make it a bit harder to diagnose the proper disease. I personally have lupus and fybromialgia, asthma and hyper tension. A nice basket full of tricks :cute:

Whatever you do, do not give up this fight. We will all tell you this is a fight worth fighting because you are fighting for your life and the lives of your loved ones. Remember that when you go into these offices you are your own advocate and if you feel like they are not treating you properly, you can leave. One doctor or five doctors does not mean anything. When I look at cases like that I shake my head because the medical system has failed my friend and this makes me sad :sorry:

We are here for you and we will help you get through this. It is all of us against the world!!!!! Sleep well and I am sending you gentle hugs and thoughts of a night without pain :hug:

ButterflyRN
07-08-2009, 03:58 AM
Teri,

great advice from eveyone! It definately sounds like lupus! Your description about your eyes sounds so familiar. Before I was diagnosed my eyes would get red and swell shut!! You may want to even get a third opinion. I've have 2nd and third opinions a few years ago at Johns Hopkins Lupus Center and at NIH. You may want to look into them if you are willing to travel! THere is also a great lupus center in Pittsburgh PA!

Don't give up and fight for your health! There are still so many of us that are struggling with doctors and you are YOUR BEST ADVOCATE!!!!!

I am actually off now to get my day started by picking up lab results from the hospital calling the nephrologist (kidney doc) and get some action taken TODAY for this severe lupus nephritis flare that I am in. I will sit at his office until I get an answer on how to be treated!!!

All the love and support I have to give I send to you! Stick it out and if you have to go to 50 docs then do it. Make sure you get a copy of all your labs. keep track of them to show the trends and keep a symptom journal to track also. Then you can take a copy of the jounal with you and say ok, here it is!!!!

Good luck Teri and keep us updated!!

crmj1183
07-08-2009, 05:52 AM
hi Teri,

Im sorry you are going through this I hope you get some answers really sonn and I hope it isnt Lupus, but if it is Im sure you will be fine. Good luck and you are in my thoughts. Bless


Chriss

Angel Oliver
07-08-2009, 07:03 AM
Please dont give up as hard as it feels...please keep fighting. Today i feel like you.I too have not a confirmed diagnosis,yet at christmas i was diagnosed with Lupus before the bloods came backe,then they came back n they changed the diagnosis.I too have the chest n face rash,have many many symptoms.On my last visit to the rheumi he sat there holdig in a yawn,didnt seem interested and said he is still thinking it is lupus but for now its chronic fatigue syndrome.I have recetly been diagnosed with fibromyalgia,have raynauds as i forgot until i found a doctors letter today saying i have it lol.I have ibs,acid reflux,asthma,depress,anxiety attacks insomnia.Basically like everyone else here i lived an active life before....now like today its taken me hurs to get out of bed.I lay here today thinking....oh no another day...i feel so depressed and alone.But i got out of bed and something maybe the human nature is telling me to carry on...fight it. When i see doctors i can sense the 'oh heres a hypa'' but you know what...i know my body and this is certainly not normal to me what i feeling.You will get used to the doctors bad attitudes,but one day...like me...we will get to know whats up with us for sure,but to do that you have to keep fighting and not letting their bad attitudes or whatever it is ...get to us.
We are all here for you.Hope your next appointment is better for you,but if not remember all of us....right beside you!

lots of love
Amanda.xxxxxxx

Pearl
07-08-2009, 08:41 AM
I just saw your post (sorry, I've been away for a few days). I see you are from OKC...I'm in Mustang. I'll pm you with some info for support, etc.

Keep pressing for answers. As you can see from everyone who has offered advice, the diagnosis process can be frustrating.

Hang in there,

Jana