PDA

View Full Version : newbie with a huge dose of frustration



fooj
07-07-2007, 02:18 AM
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?
Fooj

Saysusie
07-07-2007, 10:05 AM
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
Saysusie

IloveHistory
07-07-2007, 10:07 AM
Hi Fooj!

Welcome to the Forum! :D I'm really glad that you found us! :D

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! :)

IloveHistory
07-07-2007, 10:09 AM
Oh! I see Saysusie has popped in and given you her usual wonderful information and advice! :D

magistramarla
07-07-2007, 05:58 PM
H fooj,
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!
Marla

fooj
07-09-2007, 11:04 PM
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.

Fooj

Saysusie
07-10-2007, 09:00 AM
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
Saysusie

fooj
07-12-2007, 02:05 PM
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!

Saysusie
07-12-2007, 03:05 PM
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
Saysusie

Oluwa
07-12-2007, 04:20 PM
Fooj,

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.
Oluwa

magistramarla
07-12-2007, 06:41 PM
Hi Fooj,
I've definitely been there, done that with the laundry, etc. and I know what it is like to feel that you are THEONLY ONE who can take care of everything, for everybody. I've done that, too. It's very hard, but I'm trying my best to learn to step back and let my daughters do things for me now. We have to learn to be just a little selfish and to take care of ourselves a bit more now. As someone else asked, are any of your kiddos old enough to help out? Older ones can fetch the baby for you, play school and read to siblings, learn to do the laundry, or even make peanut butter and jelly lunches for the younger ones while you curl up with the baby and nap when he/she does. We taught this important lesson to moms when I was a La Leche Leader, many, many years ago. I have to admit that I wasn't very good at taking my own advice back then, but now it is very important to get that rest when we need it. Please know that we are all here to support each other and that some of us, like myself, know what it's like to have a full house!
Good luck, and keep us informed,
Marla

MsDuckie
07-14-2007, 09:44 AM
I have been going through the limbo cycle for ten years... Back in 1997, I became ill, aching all over, all sorts of weird things happening... First, I was told that I had endometriosis (through surgery), then, in 1999, I got married Dec. 4th, I became ill two weeks later for about six months, positive ANA, extrememly high sed rate, bad muscle contractions, breathing problems, achiness, diabetes, (I have had anemia off and on since I was 13 years old... Multiple UTIs, had had protein in my urine off and on for yrs (even told that I had preeclampsia because of it back in 1992). My family dr referred me to the neurologist. He did some testing, referred me to the rheumotologist because of the sed rate, etc. My heart then became enlarged, my heartrate would stay at 140 beats per minute for extended periods of time, I then started sleeping about eighteen hrs a day. I missed two appts with the rheum dr and he said he would not see me again (I had overslept). I was then told after a sleep study that I had sleep apnea and was put on a CPAP. I then gained a massive amount of weight and it got so bad that my family dr recommended a gastric bypass. I had that in 2002, then I started having problems with anemia really bad... Up until March of this yr, I had been having either blood or iron transfusions every 3 or 4 months. I started having fainting spells about a yr after the surgery, my dr said that my potassium level was off (dr considered Addison's disease, but my level was high, but not high enough)... I got pregnant in July, 2004, my diabetes became out of control. Luckily, I had a beautiful baby boy- that's why I'm here for my kids... Anyhow, I kept having problems, when I was diagnosed with endometriosis back in '97, I'd had a bone scan done due to the meds they put me on and it was really high/good... when I had my son, I ruptured two discs and when the dr got in, he said it looked like I had some sort of degenerative bone disease (I got two cages and a rod from that experience.)... My dr kept sending me to the rheum dr, saying that he thought I had lupus, the dr I was seeing then said he didn't think it was lupus.

I had my back surgery in November, 2005 (five months after my son was born), I started having pain in my stomach in May of 2006, did an endoscopy (diagnosed with ulcers again (that'd been going on since 2002))-not enough to precipitate the anemia, but my dr wanted to do exploratory surgery to see if he could finally figure out what was wrong... They did my presurgery testing and my EKG showed inverted t-waves and my heart rate normally now would run at 42 beats per minute- a long way from the 140s, so I was referred to a cardiologist and the surgery was put off indefinitely. My stress test came back okay, but they had to do a drug-induced one to get my heart rate up high enough which took a lot longer than normal is what they kept telling me... They said that I just had the t-waves when my heart rate was low, so I was good to go... I put off the surgery a bit longer to see what would happen...

I started aching again and cld the rheum dr and got an appt, he put me on celebrex and did a urinalysis and some blood work. The secretary cld me a few days later and said that the dr wanted to retest my urine because I had blood in it. I went in and the dr had no idea why I was there until I said that my urine didn't look right and reminded him that the secretary had cld. They did a repeat, it only showed a few white cells...


I finally started feeling good again back about a year ago (July, 2006) and was in the process of taking some EMT classes when I became really sick again- I was pregnant again. Then, in October of 2006, I got really sick again, rash, headache, really bad UTI that would not go away, anemic again to the point of needing a transfusion again, started having allergic reactions to medications, was given Rocephin(I think that's how that's spelled...) and broke out in hives. The dr gave me Benadryl and transferred to IU Med Ctr where my high risk OB was... They did an EKG and my EKG had changed a lot, they put me on a bunch of stuff and the rheum dr on call came in and checked to see if I was having a lupus flare up of to see what was going on... The first dr came in and I explained that I was told that I didn't have lupus, he checked me over and said he would return with another dr. They did some blood work again and the dr that came in looked me over and said that I was having a lupus flare up, put me on steroids and plaquenil. Then, in November, another UTI, got my blood transfusion, just generally wore out... I started getting extreme headaches, they did a brain MRI and it showed an abnormality on the right side of my brain and they did an endoscopy and ultrasound of my stomach because of the stomach pain I was still having... remember I'm still pregnant while this is all going on... The ultrasound showed that my spleen was enlarged now, but the endoscopy showed no ulcers this time... They couldn't do anything else for me because of the pregnancy except treat the symptoms... I dealt with everything, achiness, etc., and then in April, I had blood in my urine again and the dr told me that I needed to go ahead and have the baby. They did a c-section because of my back and the fact that I can not have epidurals anymore and they didn't want to mess up my back anymore... I was released a week later on antibiotics and pain meds.

I was feeling really good (I had energy even though I ached), they started me on B-12 shots for a month back in March and I'd been taking them every week and it was keeping my hemoglobin up (it's 14, not 7)... I was still feeling really good, I'd been taking a high dose of ibuprofen because I was breastfeeding and didn't want to take the other meds... I could tell when I didn't take it and, sometimes, I'd have to take it before I got up in the am. Then, about three weeks ago, I broke out... I'd broke out like this once before that I could recall (about three years ago)... It was a little at first, then all over my body, they blistered and pussed. My family dr sent me to the rheum dr. He looked me over and said I was having a flare-up, put me on plaquenil and prednisone (a low dose). I started having stomach problems, they put me on meds for that... They cld me from the rheum dr and said that I showed blood in my urine again and wanted a repeat test... I talked to my family dr and told her that I kept having a urine with protein and then it was clear. They did four tests in two weeks with two showing protein (I have not had my period since July 2006 because of the breastfeeding, which is what the secretary at the rheum dr asked about...) My family dr said she was going to talk to the drs about sending me to the urologist and then I got a cl from the secretary again requesting that the dr see me in his office next Thursday for I have no idea what reason...

Anyhow, after I started the plaquenil again and the prednisone, I started throwing up... The rash got worst. I had to stop breastfeeding because I was sick all the time and wore out. Last Saturday, I cld my family dr and told her what was going on... They changed the prednisone a bit and put me on that 3 a day plan, 3 for 3 days, 2 for 3 days, 1 for 3 days... The rash has gone most of the way away- I still have it a bit, but a couple of days ago, I started coughing really bad... to the point of losing my breath. Yesterday, they put me on an inhaler and some diabetic cough medicine. It works for about two hrs, but I can only use it every four and I'm freaking out about what to do. I nd to take care of my kids, but I have having such a problem with coughing until I lose my breath that I have no idea what to do... I am so sick of going to the hospital and waiting... I don't know anymore whether I have lupus or whether something else is wrong. Even if I do have lupus, the issue of my spleen being enlarged has not been addressed... I know that I need some help, but I have no idea where to look... The other problem is in being able to afford to go to the dr because I still have medicaid from being pregnant and high risk, but I have no idea what I am going to do after it lapses... If anyone has any ideas, I will take them with great appreciation. I want my life back...

Saysusie
07-15-2007, 09:46 AM
Hi MsDuckie

I am so sorry that you are still suffering after so many years. With reference to your enlarged spleen, your doctors may be trying to find the underlying cause, doctors do this by a process of elimination and it is this process that can be frustrating and lengthy to us, the patients (see the list of causes of enlarged spleen below). An enlarged spleen (splenomegaly) is not a disease in itself but the result of another underlying disorder. Many disorders can make the spleen enlarge and, unfortunately, lupus is one of those disorders . Your doctor will need to run blood tests as they will show decreased numbers of red blood cells, white blood cells, and platelets. When blood cells are examined under a microscope, their shape and size may provide clues to the cause of the spleen enlargement. Blood protein measurement can determine whether other conditions are present that can also cause the spleen to enlarge, such as amyloidosis, sarcoidosis, malaria, kala-azar, brucellosis, and tuberculosis.
Once the underlying cause if found, your doctor will likely treat the underlying disease that caused the enlarged spleen and this will take care of the enlarged spleen. Surgical removal of the spleen (splenectomy) may be necessary but can cause problems, including an increased susceptibility to infections. However, the risks are worth taking in certain critical situations: when the spleen destroys red blood cells so rapidly that severe anemia develops; when it so depletes stores of white blood cells and platelets that infection and bleeding are likely; when it is so large that it causes pain or puts pressure on other organs; or when it is so large that parts of it bleed or die. As an alternative to surgery, radiation therapy can sometimes be used to shrink the spleen.

Here is a list of some of the causes of an enlarged spleen:
Infections Hepatitis, Infectious mononucleosis, Psittacosis, Subacute bacterial endocarditis, Brucellosis, Kala-azar, Malaria, Syphilis, Tuberculosis, Anemias, Hereditary elliptocytosis, Hereditary spherocytosis
Sickle cell disease (mainly in children), Thalassemia, Blood cancers and myeloproliferative disorders, Hodgkin's disease and other lymphomas,
Leukemia, Myelofibrosis, Polycythemia vera, Storage diseases,
Gaucher's disease, Niemann-Pick disease, Wolman's disease, Hand-Schüller-Christian disease, Letterer-Siwe disease.
OTHER CAUSES OF ENLARGED SPLEEN:
Cirrhosis, Amyloidosis, Felty's syndrome, Sarcoidosis, (LUPUS) Systemic lupus erythematosus, Cysts in the spleen, External pressure on veins from the spleen or to the liver, Blood clot in a vein from the spleen or to the liver.
It sounds as if your doctors may be pretty sure that you have lupus. However, diagnosing this disease is also done through a process of elimination and it is made even more difficult because Lupus can mimick so many other diseases, Lupus changes: ( i.e. Symptoms develop slowly, some symptoms disappear to be replaced with other symptoms, etc.), and there is no one definitive test to determine if a person does or does not have lupus.
I know the waiting while your suffer from one symptom to another is excruciating, frustrating and, mostly, causing you immense pain and poor quality of life. I can only tell you that I understand and that we are all here for you to try to help you through all of this. I am happy that you were able to have two beautiful, healthy children. What a wonderful blessing amidst all of your health problems. Please know that you are not alone, we are here for you whenever you need us!

I wish you Much Peace and Many Blessings
Saysusie

Brian0025
07-17-2007, 04:36 AM
I'd be more worried about the baby, if it were me.
Sorry, don't mean to be sour. -- Not talking to you specifically, but, it's like a doc. on the Dr. Phil show said... If you have illnesses or are on medication, and you want to have a baby, "you might as well be giving him/her cigarrettes, and booze."

fooj
07-20-2007, 08:31 PM
msduckie

Im so sorry you are having such an awful time getting diagnosed and treated. Have you considered changing rheumys and perhaps even your gp? It is a pain in the butt to change drs and you will feel like you are starting from the beginning again but you may get the answers you need with a fresh look and a new point of view. I know it is hard to wait for a new doc to get the picture but trust me it you can get the right doc you will be happy you did.

I just saw the neuro and she changed my neurotin rx. I hope it helps with the head spinning thing. I was so happy the tell her that I had not had a full blown migrain in about a year and a half but that didn't last. I had a whopper the night that I had my appt. with her. but this one was different. I had no warning and it was the worst one I have ever had. I threw up all night and had "remnants" of the head ache for going on four days now. My stomach had been a mess and I haven't been able to eat hardly anything. We have my daughter's graduation party in one week and I feel like I have the flu. I have been baking for 2 days and have a full schedule of yard work for tomorrow. I have been painting and finishing up several dozen projects to get the house ready for 150 people to tramp in and out. At times I think we have to many friends then at other times --like when I need help-- I feel like I have very few friends. It is hard to ask others for help all the time. I have one friend here that will take my little ones for drs. appts. but I feel like I ask her too often--you know how many appt. you have to go to to get this all diagnosed and under control. This is when I wish my mom was closer.

I hope you find someone who can help you with you kids and keep you caught up with your house work. that in it self can help you feel at least a little less stressed. I know that that is one of the reasons I get insomnia even though I am so exhausted I can't even talk straight. Please let us know if you find out something new or if you can get a new doc who can give you the attention you need and deserve.

fooj