hi everyone, i am wondering if anyone can give me any suggestions or advise. here is my story!
i am 26yrs old, have been ill for two years with vasculitis, alopecia totalis, burning rash that appears around one eye every few weeks or so, muscle and joint pain, chronic urinary tract infections, many bowel problems, depression, major fatigue and sleeping problems, head aches, night sweats and stinging legs when ever i get out of a warm bath or shower or just getting out of a warm bed, memory problems and sometimes i get this real weird funny feeling in my head that feels like my head is not attached to my body.
i know some of these symptoms sound weird but i am searching everywhere to get to the bottom of this as doctors say that they have no idea whats wrong and just to live life the best i can but i cant until i know whats wrong with me.
my ana test at first was borderline but now says negetive but my bloodtest results state that my immune system is attacking different parts of my body.
i have been unable to work for two years and i am desperately seeking some answers.
does anyone have any idea what is wrong with me or has anyone had these symptoms and been diagnosed?
please help, any advise would be greatly appreciated!
Mishl33, sorry you are in so much pain and depression.
I too have some of your symtoms. I had an MRI done and they found an ARACHANOID CYST on my brainstem. Which causes some symtoms. They also found some spots on my brain. They say it is caused from lupus.
I hope you feel better soon. Make sure you have a good repor with your dr.
Sounds like possible Lupus to me. Go see a
Rheumatologist. He is the best one to diagnose this.
Blood tests help but don't always pick up the problem
at first. The fact that you had a border line result
once suggests there is something going on. I don't
understand how a DR. can be so uncaring about these
symptoms and expect you to just live with it. It
really makes me mad when I hear that. They wouldn't
ignore it if it was happening to them. They would be
whining like babies for someone to help them. I
think sometimes when Dr.s don't know what is going
on they just want to sweep it under the rug.
Good luck to you. Don't give up- a Lupus diagnoses
is sometimes hard to come up with. It is a weird
disease with many many symptoms.
I'm so sorry you're going thru this! Many of us have had negative then positive then negative then full-blown positive results.
It certainly sounds like you need to see a Rheumy. Keep a detailed log of your symptoms with times and even note what you've eaten, if you've been outside (sun exposure), and how you feel on a scale of 1-10. If you have the rashes, take pictures - because sure enough they won't be present when you can see the Rheumy.
I'm dealing with a rheumy that doesn't understand how my ever-increasing fatigue is impacting my daily activity. It means jumping up and down and throwing a fit sometimes - to stand up for yourself. Sometimes it means finding another doctor. Your health and life are too precious to "just deal with it".
thanks so much for your replies!
i really do think it is about i look at seeing another doctor but everytime i ask my immunologist about seeing other specialists who may be able to help with my illness, he just says if i cant find what is wrong then i am sure they wont be able to either.
i am determined to find what is wrong even if it means traveling long distances to see the best doctors available because until i sort out my health, my life is on hold and the major fatigue and sleeping problems affect my life so much.
when i was in hospital last year the doctors there were sure that i had lupus but my immunologist still wont look any further into it.
these past two years, i have actually realised that the medical profession is not at all what it is made out to be. i am the one who is doing all the searching for answers and the doctors do not realise how upsetting and painful it is to be so sick with an illness that cant be diagnosed. the rash around my eye does come up frequently after being in the sun and the past six months i cannot stand sunlight as it hurts my face and eyes, everything seems so much brighter and such a glare all the time.
anyway, i have babbled on enough but thanks so much for your understanding and advise.
Your doctors do not sound like they are very nice, or concerned. Go see somebody else. If your immunologist tells you that since he can't diagnose it, nobody else can, the first thing to do would be to get rid of him! Nobody is GOD! I am sure that there is a caring doctor out there somewhere, who can diagnose what he has missed. You said that when you were in the hospital, the doctors thought you had Lupus. You know what? They were probably right, and even if the immunologist says it's not, I would still go see a rheumatologist. Just to give you an example of how there are still some really good, caring, patient-oriented doctors out there, I want to tell you about what happened to me not that long ago. I have very severe eye problems, and even though my opthalmologist hasn't been able to get rid of them, he is extremely caring and concerned, and if it wasn't for him being so wonderful, I don't know where I would be right now. He is so good to his patients. Last christmas I had a very very bad corneal ulcer. I woke up new years day literally crying hysterically in pain. I called him (on his cell phone, no less!) and he told me what to do. Then, at 7pm, the phone rang, and it was him. I hadn't called him back, and he wanted to know what was happening. He decided that he wanted to see me right then and there. It took him a few hours to get there, and at 11pm, he opened up his office to look at my eye. I knew right then and there that I had a great doctor. And, when he talks to me, he doesn't say "you are going through a lot" He says "WE are going through a lot". He actually says that he loses sleep over me. You sound like you feel very alone. I am sorry that you are suffering so much, and that none of your doctors seem to understand. You are not alone though, because you have all of us. You can talk to me if you want, cause I understand. You need to find a doctor who you can talk to and who is not going to dismiss your symptoms. I told you that story about my dr, so you would realize that among all the money hungry, unconcerned doctors, there are still a few really good ones left out there. You will find one too. Keep your chin up. http://www.healthboards.com/ubb/dance.gif
thanks so much purple, you really sound like a very caring person and your eye doctor sounds like a saint but i have been to many doctors who are now all telling me that there are no more tests that they can do and they still have no idea what is wrong with me and they never may know so i should just learn to accept the illness and live life the best i can but i cant! i need to know what is wrong and how long it will last and if it can be treated. i know if my doctors were in my shoes then they would not give up!
i really dont know where to go from here as i have been to some of the best specialists and they just tell me to learn to live with whatever it is.
what do i do??? i am glad that there are people out there who know what im going through but i just keep coming to dead ends and i cant seem to find a specialist who will listen to me and help me!
i am so sad and frustrated and i just want someone to help me find out what is wrong. i am trying so hard to keep a positive mind but all i get are disappointments from my doctors.
thanks everyone for being there for me!
I know exactly how you feel mishl. I was just diagnosed with sjogrens, and it's actually a relief to have been diagnosed with something, just so I know that I am not crazy! You know, none of my doctors ever told me this was all in my head, but some of my friends and family memebers have. Or at least, they act like they think it is all a big nothing. And then they get me thinking. Maybe they are right, maybe it is all in my head. But then I think to myself, if it is all in my head, I wouldn't have fevers, I wouldn't have joints that crack and swell, I wouldn't have purple hands, I wouldn't have nosebleeds from dryness, and most of all, I would not have specks on my corneas that look like flaking dry skin!!! Those are all physical symptoms. Yes, I do agree that ones physical well-being is greatly affected by ones psychological well-being. I have spoken to therapists about this, and they have all told me that you cannot invent an illness in your mind. Sure, if you are nervous or depressed, that may trigger a physical response, but that is not going to account for all of the symptoms that you described. If any of my doctors ever told me that my symptoms were "in my head", I would first tell them "if my symptoms are only in my head, then how can I see them physically?" I mean, don't these doctors realize that feeling sad is not going to make your joints swell or make your eyes red or make you get a urinary tract infection? I mean, depression cannot make your eye swell, or make you have bacteria in your bladder. There has to be a physical reason for that. I really think that these doctors only tell people it is all in their heads, because they aren't able to treat it themselves, and they don't want to look stupid. http://www.healthboards.com/ubb/rolleyes.gif When I was a kid, I used to get very severe yeast infections. They told me it was all in my head. Not to be graphic, but how could I get discharge, if it was all in my head? Finally, my mom found a wonderful doctor who knew how to help me, and I still go to him to this day. Just curious, how many different doctors have you seen?
Do you ever feel well enough to go out of the house at all? When you do feel well enough, it might be a good idea just to get dressed and go for a walk. Sometimes getting out just for a few minutes can help you feel better both physically and emotionally. When my mom came home after surgery, the doctors made her get up and walk and get dressed every day. Even that simple act made her feel better. It is also good to do what you are already doing, which is to talk about it with friends. Trust me, it may feel like it sometimes, but I am sure this is not in your head. Have you considered getting some medical books from the library, or going online and doing a little of your own research? Sometimes the patient has to be the one with the information, if the doctor isn't willing to take the extra step.
You know, another thing that gets me angry. Don't these doctors know that even if they can't diagnose it, that doesn't mean it isn't there? I mean, 200 years ago when somebody had joint pains, just because they hadn't discovered arthritis, that doesn't mean it wasn't there. My rheumatologist also said something very true to me. I told him that I have cold hands and feet, terrible eye problems, very bad upper respiratory problems, in January I had pnuemonia, I get joint pains, and I have trouble losing weight. He said that alone, these symptoms might not mean much, but put all of these symptoms together, and you've got something. A normal, healthy 21 year old girl would not have all of these problems, and that means that there must be an underlying cause somewhere.
So if i were you, I would get all of my medical records together, and I would go to a new immunologist, a new rheumatologist, a new family doctor, whatever, until I found somebody that I liked. Even if a doctor doesn't know everything, they don't have to be nasty or cold. There is such a thing as having a good bedside manner. That is one of the most important things.
You know, in the US, there is a TV show called "Golden Girls". Have you ever watched it? There is a character named Dorothy, who in one episode gets very sick, and nobody knows what is wrong with her. She goes to several different doctors, and they tell her it is all in her head. She finally goes to a good doctor, who tells her what she has. She had chronic fatigue syndrome. Then she runs into one of the first doctors that she had gone to, and this is pretty much what she says to him:
"doctor, your patients need caring. They need compassion. They need to be told they will be OK. You brushed me off when I was very sick and very scared. One day you are going to be on the other side. One day, you are going to be very sick, and very scared. And as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me"
That's what I want to say to some of these doctors who think they know everything. Alot of doctors fele that if they can't see something under their microscope, it isn't there. But they need to start digging deeper. I hope you can find someone who will do that. Feel free to vent to me anytime. Good luck, I hope to hear from you soon,
P.S. Yes, my eye dr is an absolute saint. I have told him time and again that I will forever be indebted to him. But he doesn't even want to hear me say "thank you" he says "it's no problem, call me whenever you need"
purple, thanks so much for your support and understanding. i have been to 3 immunologist, 2 psychiatrist, 1 gastroenterologist, 1 dermatologist and about 3 gp's and still nothing. i want to go see a rheumatologist but i have to try and get a referal first which is the hard bit. i do go out of the house when i feel ok but sometimes this is only once maybe twice a week. i have just started trying to go for a short walk when i can. i have urinary tract infections almost every month and it usually takes several courses of antibiotics to clear up an infection and then its usually back within a couple of weeks but i have been to urologists which did tests and because they could not find a reason for my infections, once again it was my fault and they said i must not be taking my antibiotics which is rediculous because i would much rather be healthy and happy than sick and in pain. when i first became ill two years ago, i lost every strand of hair on my body and then after about a year my hair finally grew back but it was white and then that fell out and grew back brown. i was really happy at this stage but as soon as my head was almost completely covered agin, within 2weeks every single hair fell out again and now i have a bald head and just recently little red sores have appeared all over my head and over half my face. if this illness was all in my head then i dont know how i managed to do all this. i also have vasculitis which is these sores i get on my body and apparently it is from inflamation of the blood vessels (how do i do this?).
my sleeping disorder is one of my major problems as well as the sore muscle and joint pain i have been getting. lately i cannot stand to be in the sunlight as it hurts my eyes and face but when i told my doctors, they just blew me off! i know in myself that all of my symptoms are not in my head as how can i make bloodtests show that my immune system is attacking different parts of my body.
i research all the time about my symptoms whenever i think i may have found some information that maybe helpful in my case, i take it to my doctors and they just dismiss it. i am not going to give up though!
you mentioned that you get cold hands and feet and they are purple sometimes, what does this mean because the same thing happens to me especially my feet which sting and hurt like crazy quite alot.
well, i will keep searching for a good specialist and thankyou again for being so understanding as this is quite a hard and frustrating time for me.
Well mish, according to my rheumatologist, the cold hands and feet are called raynauds syndrome, and it just has to do with something about blood vessels. It's not really serious. It usually accompanies some other autoimmune disease. That should be the first sign right there that you have one. My hands also tingle a lot, and my limbs fall asleep very easily, which he also said is a sign of an auto-immune disease. You mentioned that your hair falls out. Sometimes that can be attributed to hormones. Have you had any kind of hormone blood tests done? What about thyroid? Thyroid problems can trigger auto-immune dieases. I actually just had those tests done, and it unfortunately showed nothing. It would have explained a lot of things if I had a thyroid problem. Sigh, oh well. That would have explained the trouble losing weight, the tiredness, the puffyness around the eyes, and a whole host of other things. But then again, maybe the trouble losing weight has something to do with the fact that I cannot exercise because I am too tired, and whenever I exercise, my eyes burn so badly that I have to stop.
As for those people who still say that your symptoms are in your head, I'm sorry, but stress just does not make every single hair on your body fall out! It just doesn't happen! Although it makes shaving your legs much easier. (just trying to throw in a little humor and make you laugh a little) http://www.healthboards.com/ubb/jester.gif And like you said, if it was in your head, where would the rash on your body come from? Yes, stress can make things worse, but it cannot do all of the things that you are describing. And stress cannot make your blood tests come back abnormal. You know, it also may not be just one disease that you have. For example, some people have a whole bunch of auto-immune diseases, which put together, can produce a bunch of different symptoms.
You know, another thing that just occured to me is this: How many medications are you taking? Sometimes doctors don't pay attention to any potential side effects and drug interactions. It definitely sounds to me like your doctors really aren't too on the ball about these things! You might want to even talk to your pharmacist, just to make sure that the medicines you are taking aren't actually causing some of these problems. Medications are a wonderful thing, but sometimes they can have nasty side effects and interactions with other drugs.
You know, getting back to these doctors, it just amazes me how they can deal with sick people for so many years, and still not realize that people need compassion. In some medical schools in the US and abroad, they have this program where before graduating, students must spend a night in the hospital, being worked up and stuck and x-rayed and having to deal with IVs, etc... I think that is a wonderful thing, because they get the chance to see what it is like on the other side.
How can it be, that you have had all of these blood tests done, and have all of these symptoms, and still they cannot find anything? You said that a lot of your results are abnormal. Doesn't that mean anything??? Doesn't that clue them in that something is very WRONG? Maybe THEY are the ones with the mental problems! I am glad you are not giving up, because I sure wouldn't.
Another thing, how big is the city you live in? Sometimes you need to go to a big city, with major hospitals and universities. In New York, we have no shortage of those, so I have been extremely fortunate to get some of the best medical care in the world. Have you thought about going to a different hospital or even another country, for answers? I know how expensive and tiring/time consuming that can be, but people from all over the world travel to the US every day to seek medical help. I am sure Australia has very good doctors too, but in the US, as well as England, we have some of the best in the world.
Good luck, keep your chin up, let me know what's going on. As I said, you can talk to me any time, we all have to stick together.
P.S. Have you been keeping a journal of all of your symptoms, as well as all of your medications and when you take them? Sometimes it helps to prove to your doctors that you are serious, if you actually bring them written evidence that you are taking your medicine. (but then again, why should you have to prove it to them?)
[This message has been edited by purple2067 (edited 08-10-2002).]
[This message has been edited by purple2067 (edited 08-10-2002).]
Insist on going to a rheumy. If it means having someone throw a fit for you, then do it. Humor the doctor and ask him what he's got to lose? Blame it on your mother - say that she's driving you crazy to see a rheumy. Explain that you can't just "live with it" that you are extremely debilitated and you haven't completely lost your fighting spirit yet.
Sometimes it's like finding the perfect mate (ha ha as if there's one) - you have to kiss a lot of frogs (aka doctors) until you find one that listens and knows what the heck he/she is doing. When it's your life, it's hard to be patient - so screw it and don't be patient. Get on the phone first thing tomorrow am and insist on not only a referral, but have your doctor call a rheumy and get you in ASAP. (Beats waiting 3 months)
my doctor i saw just the other day said that i do have raynauds and he has put me on medication which is meant to be for blood pressure but i have not had any relief yet since taking the tablets. i have made another appointment to see my doctor next week and i am going to demand a referral for a rheumatologist so wish me luck.
i am determined not to give up and spending the rest of my days in bed miserable is out of the question for me.
my biggest problem is not knowing exactly what is wrong with me. at least if i knew what the problem was then i could have some idea of whether it will go away in time or if it can be treated and know what my future holds for me, i simply cant just go on the way i am.
i thankyou all so much for all your advice and support as it has been so helpful and comforting to me.
please keep in touch!
Did your doc put you on Procardia? That's what mine recommended. I wouldn't take it - I'm on enough meds now and didn't like the side effects. My endocrinologist recommended red pepper flake capsules - you can get them at some health food places - and she also recommended eating lots of spicey foods - it increases the circulation.
My Raynaud's has been getting MUCH worse over the past 18 months - at first it was just mildly cold fingers/toes then it progressed to severely painful and now I'm bothered in A/C. I've gone the entire summer in Atlanta without A/C on in the house - I'd rather sweat than go thru another episode. When I go to the movies, I look like a freak b/c I bring a heavy sweater. And I have to remember not to wear open-toed shoes. I was taking the red pepper flakes only during the winter, but I guess it's time to start taking it year 'round.
I'm surprised that with the Raynaud's that they are pressing for a Lupus Dx. My ANA's were negative for a long time, then they were up to 1:640 for three years but I got some results back last week that were totally negative. Frustration! Doctor wants me back to take more samples.
See what you can do to find a good rheumy to get your doc to refer you to. Check with any friends/family that have lupus, arthritis, fibromyalgia. If that doesn't work, check your local arthritis or lupus foundation for referrals. (arthritis.org and lupus.org)
Make sure to bring copies of your med records - I always keep a copy - that way you're up to date on stuff yourself and you can have it handy for other docs.
the medication for raynauds my doctor has put me on is called zanidip.
i have read about lupus and i have so many of the symptoms but my doctor said because my last bloodtest came up negetive then i dont have it. can you tell me alittle more about this raynauds? i dont know a great deal about it other than the pain it causes me and the blue/purple colour that my feet and sometimes hands go.
sorry, got to cut this reply short as i am not feeling very well.
well being diagnosed with raynauds is a start...at least you have been diagnosed with SOMETHING...now maybe that they see you have Raynauds, they will open their minds and find something else that could be causing all of this.
thanks purple, how are your health problems going? do you know of anything i can do to help the muscle and joint pain i am suffering from? i thought it was just the cold weather making it worse but today i sat out in the sun for a while and the pain got alot worse.
You need to get your posterior to a Rheumatologist. Since you have a Raynaud's diagnosis, your doctor shouldn't balk at you. I would demand it and advise him that you will be contacting the insurance company to get it done if he won't. Your other choice is to get yet another PCP...
A diagnosis of Lupus DOES NOT require positive blood tests. Having 4 of the 11 criteria qualifies. I would print that out from the web and stick it in your doctor's face.
Don't give up. I wish I could go a couple of rounds with your doctor. Put him in his place. Grrrr!