newbie with a huge dose of frustration
5 months after my 6th baby I started developing painful joints and fatigue now after adding several more symptoms including lesions on my brain and blood and protien in my urine and a significantly positive ana (and after a nuclear scan finding inflamation in almost every joint in my body) foggy brain, nausea, three bouts of broncitus and an ear infection at 44 years old I still don't seem to be able to get a straight answer. Rhuemy says it is likely lupus but hasn't developed enough but it could be something else another audio immune disease. No lyme, no rhuemitoid factor. I did develope Hoshimoto disease but was assured that that is not all there is to the other symptoms. I feel like I will only get real help is I grow a sign on my head that says "I have lupus! Please treat me!" Where do I go from here?
You are caught in the "Diagnosis Limbo Cycle" that we have ALL gone through. Unfortuantely, Lupus is an extremely difficult disease to diagnose for several reasons: It mimicks the symptoms of other auto-immune disorders (for example, joint pain and inflammation like Rheumatoid Arthritis) - The disease itself changes and symptoms can evolve slowly (the symptoms that you exhibit today may go away and/or be replaced with completely different symptoms tomorrow) - There is no one test that can be given in order to say "yes your have Lupus" or "no you do not have Lupus".
For many of us, getting a diagnosis took almost a year. During that time, we were frustrated at not receiving treatment and our symptoms worsened.
There is not much that we can do to change this diagnostic process.
To make a diagnosis of SLE, you must exhivit clinical evidence of a multi-system disease (you must have abnormalities in several different organ systems). The typical symptoms or signs that might lead your doctors to suspect SLE are:
* Skin: Butterfly rash across the cheeks; ulcers in the mouth; hair loss.
* Joints: Pain; redness, swelling.
* Kidney: Abnormal urinalysis suggesting kidney disease.
* Lining membranes: Pleurisy (inflammation of the lining of the lung);
* Pericarditis (inflammation of the heart lining); and/or peritonitis (inflammation around the abdomen). Taken together, these types of inflammation are known as polyserositis.
* Blood: Hemolytic anemia (the red cells are destroyed by autoantibodies); leukopenia (low white blood cell count);
* Thrombocytopenia (low number of platelets).
* Lungs: Infiltrates (shadowy areas seen on a chest x-ray) that come and go
* Nervous system: Convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular control or strength.
If you have several of these symptoms, your doctor will then usually order a series of tests to examine how well your immune system is functioning. At this point, your doctor will be looking for evidence of autoantibodies (which you state that you have). The doctor will then run a series of laboratory tests in order to aid him in making a diagnosis and/or to determin if you have active SLE. Those tests are:
* sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause
serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin
* routine blood counts which may reveal anemia and low platelet and white cell counts
* routine chemistry panels which may reveal
kidney involvement by increases in serum blood urea nitrogen and creatinine
* abnormalities of liver function tests
i* ncreased muscle enzymes (such as CPK) if muscle involvement is present.
These kinds of abnormalities will tell the doctor that you may have some form of systemic disease with multiple organ involvement. The doctor will then run blood tests. The common blood tests for Lupus are:
* Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood
* Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
* Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
* Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions
* Complement proteins C3 and C4 test to examine specific levels
The ANA Test: The immunofluorescent antinuclear antibody (ANA or FANA) test is positive in almost all people with systemic lupus (97 percent), and iit s the most sensitive diagnostic test currently available for confirming the diagnosis of systemic lupus, but ONLY when a positive ANA is accompanied by the above mentioned clinical findings. A positive ANA test, by itself, is not proof of lupus since the test may also be positive in:
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.
Most doctors will first make sure that you do not have any of the conditions above before they will settle on a diagnosis of Lupus. If your doctor does suspect Lupus, he can begin treating you for some of your symptoms as the treatment is the same for many of the symptoms of the above listed conditions. Ask that he beging to prescribe treatment to deal with those issues now, while awaiting a final diagnosis. There is no need for you to go untreated during this process.
Please keep us posted and let us know how you are doing!
Peace and Blessings
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I'm sorry that you are going through such a hard time, but please know that you are in my thoughts and prayers...
Hopefully, someone will have some advice for you!
Keep well and God bless!
Oh! I see Saysusie has popped in and given you her usual wonderful information and advice!
I'm at exactly the same point in the diagnosis limbo cycle! I've seen the rheumy once, and he will only say that "it seems to be an auto-immune disease", but he's waiting for all of the tests to come back. The lab drew a huge amount of blood last month for those tests. I'll see him again on Friday. Meanwhile, he has me taking a NSAID called Relafen, which doesn't seem to be doing much. Luckily, I'm a patient person.
I've had many of the same symptoms that you've been dealing with. The most telling one is the malar rash on my face and neck. I also have Meniere's syndrome, which affects my hearing and balance and Spasmodic Disphonia, which affects my speech. This is a bit difficult for my chosen profession, since I teach in a high school.
BTW, I have one less child than you, but thankfully, all five of mine are now adults. I have two wonderful grandsons who keep my life very busy.
Welcome to the group, and let me know how your diagnosis is going!
Thanks for being there
Thanks for all the info. I don't get much time to get on the computer without the distractions of the children. I get insomnia pretty badly sometimes so sometimes that gives me a chance to get on for a few minute. I have a docs appt this week and want to see if there is an alternative to the neurotin that I am taking cuz even after taking it for several months I still get tons of vertigo and of couse that makes the nausea worse. I tried methotrexate and the prednisone but the doses weren't high enough to do much so the old rheumy took me off them. He had me stop them quite abruptly and that put me into a talespin for about three weeks and the new rheumy talked about plaquinil ?? but hasn't started it yet. I think he wants to sort out what is joint and bone pain and what is nerve stuff and what is just pain from going 90 miles an hour with very little sleep and the stress of 6 kids. My biggest worry right now is how tired I am and how my brain feels like mush yet I can't sleep for days at a time. They tried sleep drugs but took me off that because they thought the other meds would make me sleepy as a side effect. I tried to explain that being tired is not my problem. My husband thinks I get over fatigued and that is why I can't sleep. I think maybe a long vacation in a mental institution with lots of nice drugs could be the key :? The stress of being sick and the knowledge that I could be very sick at anytime just stresses me out and I feel like I can't take the time to rest even when my body is telling me I can't move another inch. Do ya know what just skipping a days laundry with 8 people in your house does??? Yes folks 30 loads a week is a fair estimate so.... did you know that if you get tired enough you get numb to some of the pain?? But of couse I have to mention when you get any rest it's like hitting a very large brick wall at 50 miles an hour and it hurts more then I can say. I guess all this to say that I am overwhelmed and exhausted beyond words but can let myself slow down because the pain in the "morning" is often more then I can take and I am not doing a very good job coping with any of this. When did I say the merry-go-round should stop? I still have about a million more spins to go before my children are grown and I have everything I want to do done. I'm not ready to get off and slow down yet.
Thanks for listening and being there even if you are all voices in the dark of night. It's comforting to know someone has a clue of how I might be feeling.
I can't believe that your rheumy had you stop your methotrexate without weaning you off of the drug. Everyone knows that do so generally causes exacerbated problems with your disease and that methotrexate has to be reduced slowly under the watchful eyes of a doctor who knows what he/she is doing. It is a mystery to me why, if your doctor thought that the methotrexate was not a high enough dose, why he/she abruptly stopped it instead of increasing the dosage so that you could get some relief from some of the symptoms that you are describing.
Plaquenil is a standard drug used for Lupus. Plaquenil is not a painkiller, instead, it is used to decrease the damage that Lupus does to the tissues of the joints, skin and other organs in the body. Plaquenil has been used so much because it has beneficial effects on 3 major aspects of lupus; skin rashes, aches & pains and fatigue. It is one of the safest anti-malarials with the least severe side effects. It helps the muscle & joint pains, though in cases where these are severe, its effects may be too mild. One of the most successful uses is in fatigue, many patient's fatigue start to show improvement after several weeks’ treatment.
As I mentioned, Hydroxychloroquine (Plaquenil) is one of the safest drugs in medicine. The most common side effects are usually mild, and they are: indigestion, ‘gurgly tummy’, diarrhoea & headache. A rare, but important, side effect, usually only if you are taking higher doses (2-3 tablets a day) is of ‘lazy eye’ – slight difficulty in focussing. Although this side effect is harmless, it is important because many patients begin to worry about blindness – and then they needlessly stop the drug.
You are under a tremendous amount of stress and it is a well known fact that stress can cause depression, insomnia, worsen symptoms of Lupus or initiate flare or make flares last longer and (as seems to be the case for you) stress can also cause debilitating fatigue. Stress not only can cause depression, fatigue, insomnia and a general lack of well-being, but it can also cause a flare up (reactivation) of the lupus. Lupus, itself, causes fatigue - your stress causes fatigue and malaise and both of these can make your disease flare and one of the common symptoms is some sort of depression which causes insomnia. Once you are in a flare-up, your stress levels rise again, your fatigue is exacerbated, your insomnia worsens and.....well, you see the pattern here don't you?
It might be beneficial for you to speak with your rheumy about something to help you deal with depression, stress, fatigue and insomnia. These are all very real symptoms and are all intertwined and your doctors must not ignore any of them. Until these issues are under some kind of control, you will not be able to get your disease to a manageable state. Insist that your doctor listen to you and take you seriously and take ALL of your symptoms seriously. It breaks my heart to hear that you are in such a detrimental cycle. Please be aggressive with your rheumy, make a list of the things that you want him/her to deal with and insist that he/she explain to you how the two of you are going to work on each and every issue that you present.
I do hope that you begin to find some relief and please stay in touch with us so that we can continue to help you in any way that we can.
Peace and Blessings
Thanks for the advise. Had an appt. with the gp. He is a great guy and he is at least "feeling my pain". He wants me to see the rheumy first and see what he has to say. He is reluctant to change my meds or add to them at this point. Next appt. with the rheumy is in about a month. I have a neuroligist appt. next week and will talk to her about the nerve stuff so maybe that can get taken care of.The nerve stuff on the side of my face is really bugging me (it getting painful again) and the meds aren't killing it any more. I don't know what is like everywhere else but getting into see the rheumy is really difficult here. For being such a big medical teaching community, there aren't very many of them and there are a lot of elderly people here so... They say there are so many advances in treating lupus that not anywhere near as many people die from it but I feel like things will have to get a whole lot worse before anyone gets excited about treating me. And of course lingering in the back of my mind is the fact that my dad's sister died from lupus complications. She also had scleroderma so I'm sure that made matters worse and it was about 17 years ago. But it still is in the back of my mind nagging me.
I have to say I do have my bad and darker moments but over all I am happy and love my life and my family. The fustration of not being able to be the mom I once was and dealing with the pain everyday sometime just trips me up sometimes. I told my gp what I said in the last posting to you and he agrees with you but like I said want the rheumy to Rx the meds and make changes in what I am now taking. He did tell me to call him if I felt any worse or just needed to talk. I get to do that because he is a family friend as well as my doc but I don't like to take advantage so if I can deal I do. I am the tough one after all who takes care of everyone else and can do almost anything!!! :?
Well I hope you have a great week!
Please let us know what your rheumatologist determines. Don't forget to be aggressive and stand up for yourself. I hope that the two doctors will work together to help you start to manage your symptoms.
Keep us posted.
I wish you the very best!
Peace and Blessings
I wish there was more I could say or do to help. In the Charleston area? I would sure come and help you with those 30 loads. I grew up in a huge family, ten. Laundry was like scaling mountains...dishes were like icebergs. I feel for you.
I would say seek another rheumatologist, but they seem scare in your area. Gosh, what's a girl to do. Do they have a cancellation standby list? I can give suggestions, ideas how to manage tasks, relax...and etc. Are you eating properly? Or food on the run?
Can you sleep during the day and do chores at night while everyone else sleeps? Some children old enough to help with the home and the younger children?
I hope you get a lot of love and support in your home. Sometimes we need a little extra. Tight squeeze...a hug for you.
Just a screen window away.