Could I have Lupus?
Hello everyone, thanks for reading my thread. I am sorry for gatecrashing your forum, I know so little about lupus but my heart go out to all of you.
Probably quite rightly you are thinking "if you want to know what's wrong with you go to a doctor and get a diagnosis" and you are probably quite right. The truth is that I have been going to the doctor and reporting the same symptoms for 20 years. Every time the doctor does basic tests, allays his own fears that I have diabetes and nothing more happens. I haven't even seen a doctor in 3years despite my condition getting worse because they just don't seem to want to help.
I don't help myself, I am a pig headed man and don't like to make too much of a fuss and try to carry on. Problem is with passage of time I am finding it harder and harder to function and my quality of life has now all but diminished and with 2 young daughters I have to be as healthy as I can be.
Ok here's the symptoms. I was born in 1973 and endured a tough birth apparantly. Umbilical cord wrapped 3 times around my neck with jaundice, born 6 weeks early. The only obvious harm done was that I was born with strabismus or crossed eyes. My eyesight is perfect and the cause of the eye problems is neurological, probably damage to one of the cranial nerves. I am a strong charachter and despite my eye problems had a normal childhood, excelling at school and on the sports field.
My problems seemed to start at 18 years old. I started suffering from fatigue and depression which gets worse year on year. At the same time I started to develop frequent severe eye infections in the left eye which were accompanied with flu like symptoms of aches and pains in my joints, headaches and total confusion. These eye infections have never been given a diagnosis, once they claimed it was herpes virus and another specialist claimed it was adenovirus, they both agreed it was a CNS virus but disagreed which. I have learned how to avoid the actual eye infections now if I can feel them coming on (if they don't present while I'm asleep) by using saline solution. The accompanying symptoms however still present and I have 5 days of hell anyway literally feeling like I have been kicked all over. I seem to have sinus problems to varying degrees permanently with headaches again permanently. I always seem to be giving myself massage to my head, particularly the temple and sinus regions even subconsciously. Quite often feels like i am wearing a hat that is too tight. As well as head pains I have neck problems, particularly the top of my neck at the back of my head and problems with the area between my shoulder blades. I am always loosening my neck with stretches and massage but doesn't seem to help much. The pain is in the centre of my neck, in the recess at the back, worsening the higher into my head it is.
In terms of functioning on a daily basis, things are starting to get tough. My brain fog is getting worse. When I was a kid I could do complex calculations in my head, I once won money off a group of pals by multiplying 7 numbers by 6 numbers over and over. At school they judged my IQ in excess of 150. Now I can hardly add two numbers together some days and have to think about how to perform the simplest of tasks.
Getting bored yet?
I have also had what i think of as temperature problems. I am either far too hot or freezing cold, my hands and especially my feet are often very cold. I can be shivering cold and put on a pullover and within 10 seconds I am overheating. In the last few years my left side of my body seems to be wasting away and becoming muscularly weak. My balance seems also to be getting worse. Because of the strabismus I could always be a little clumsy and my balance isn't naturally great but when I was younger I played rugby and cricket at a high level and was extremely fit and strong. I can be standing talking to someone and suddenly I will overbalance and almost fall over, literally standing on one leg with my arms outstretched like I am walking on a tight rope. This is when I am standing still for heaven's sake!
I have IBS type symptoms where I don't seem to digest food properly. I am either constipated or the opposite! I have always suffered from insomnia from when I was very young and have only ever been able to fall asleep when I am at the point where I can't stay awake for another second and exhausted. My joints in my legs are often weak and very painful, my knees feel like they grind often when i walk. Seem to get aches and pains in the muscles in my legs a lot as well as stiffness and aching in my hips and ankles. My arms are fine lol!
One thing for sure is that I have CNS problems of some kind but is it lupus? From what I understand Lupus doesn't often affect men, especially big ugly ones like me! Anyway thanks for reading my marathon self absorbed nonsense. In England it seems that to get some kind of a diagnosis you have to be hospitalised with something before they will do something for you. Again I am sorry if I have gatecrashed your forum wrongly but believe me all, I feel your pain and would be really greatful if anyone can help me find the right tree to bark up to get help because I desparately need it!
Cheers all and thanks again
First I want to welcome you to WHL! Please forgive me if what I am about to say seems confusing because I am suffering from a pretty bad brainfog today myself but I wanted to let you know that we are glad you are here!
I had to chuckle at the comment about not taking care of yourself and not going to doctors because they don't listen. So many of us have been there! While I can't say if you have Lupus or another autoimmune disease it is very clear that you have something going on. I too suffer from CNS involvement so I understand exactly where you are coming from. Many of us have been on the doctor roller coaster while we try, often without much success, to find someone to help us. Sadly it takes some weeks, months, years or even decades and all the while we suffer thinking that maybe we are just nuts!
You need to start the doctor search over. You need to be your own advocate and find one that will listen or go to another one! It is not doctor shopping when you are fighting for your life and your health! If one doesn't listen then go to another! There are things that you need to do that will help you be prepared for the appointments and any number of people could help you with that. You are not in the wrong place. You are in a wonderful place with fabulous people who are all here for the same reason. We are here to help each other through a difficult time and to share our experiences so maybe others can learn from them. The name here is We Have Lupus but anyone and everyone is welcome here. There are several (wonderful) men here so you won't be alone in that regard either.
Once again, welcome to the WHL family! I look forward to getting to know you!
Success is not final, failure is not fatal: it is the courage to continue that counts.
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yes men do get lupus, i have it, and quite a few others get it also, about 8-10 %.
i agree with mari, there is something wrong with your brain LOL.
we as normal people cannot say what, but we can help steer you in the right direction.
can i suggest that you start writing down your problem. similar to what you wrote above.
then when you see a specialist, they have a good short story to read, of what is wrong with you.
then you need to find a good doctor, that will refer you to the specialists.
remember, that you pay the doctor, (so he works for you).
alot of us have problems with doctors that do not listen properly.
you need a good specialist to help decipher what is happenning to your brain.
a rhuematologist would be a good start, but he will probably want to refer you to someone else as well.
rhuematologists deal with our type of problems.
hopefully you can start to sort out what is really happenning with you.
i am 50 in a couple of months, and was only diagnosed about 2 years ago, having sufffered for over 30 years.
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My daughter has strabismus from SOD/ONH. Have you looked into these? In the days of your birth (not to say you are old *giggles*) they likely would not have looked into it at all. It would be worth looking into. It is a congenital malformation of mid line structures of the brain which range from the optic nerves to pituitary. It has a range of symptoms. My daughter is blind in one eye as one of her optic nerves was affected. She is physically weak and while she has the energy as a youngin to run and be playful, she gets tired and has an awkward gate. Just like you she has temperature issues, it could be winter and she could be sweating... in summer she could have the coldest little hands ever... we have to watch her constantly to make sure she isn't over heating. She has almost diabetes like symptoms and if she has not had a good supply of healthy food and water she will become very unresponsive, her eyes will look like they are rolling back slightly as though she is falling asleep. My daughter is missing the center structure of her brain but seems to have an intact pituitary gland, but her hemispheres are not connected. There could be such slight abnormalities that will cause all kinds of symptoms and go undiagnosed.
She was diagnosed via CT and requires a full workup every year to make sure everything is properly balanced and she isn't lacking something essential to growth.
She will seem normal as an adult, but will experience hormone difficulties, brain fog and difficulty concentrating (she already does) and she may get to the stage like you, that her muscle condition becomes difficult to maintain without a lot of activity. Your balance issues sound linked to your sinus issues, you may have a malformation or issue with your sinuses? Seeing as your sinuses are linked to your ears, inflammation can cause balance difficulties. Im just guessing of course but its something to look into. Having the midline brain issues will often sounds like diabetes. You should have a blood test for the diabetes though! Its a simple test and can rule it out from other things.
I wouldn't rule out lupus because it presents itself in all kinds of ways... but at the moment your symptoms sound a bit more like something else... unfortunately there are so many autoimmune issues that share such similar symptoms. You seem to have CNS symptoms, you should have a CT or MRI as soon as you can manage it. This will rule out any rather nasty CNS issues. Either way stick around and let us know how you go And I think most people on here love playing the "guess the disease" game anyway.... we'd all gladly understudy Dr House I would say LOL
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Welcome to our lovely family of WHL and your not gate crashing mate and another thing (STOP PUTTING YOURSELF DOWN)
Nigel sorry to hear about your past from birth and all your symptoms seem to be linked to Lupus or Autoimmune Diseases, i'm from the uk also and was born with Lupus but never diagnosed till 3yrs ago but had symptoms from 14 but the lot kicked in at your age 18.
First of all you need to see your GP and don't give in before you start, that hot and coldness could be Raynauds Disease but to what degree you won't know, you need to get your doctor to send you to a dermatologist, as when i was diagnosed i was then sent to a rheumo.
With the neck pain and back sounds to me like some form of Arthritis and your carrying symptoms of sjogren's disease which i've got and they can drive you made, do you suffer with muscle spasms??
So push to be sent and it's alright your doctor doing tests but Lupus loves playing with the bloods and making them fluctuate, so if you have something positive carrying in your system it can give off a false reading and some Doctor's take it as that, where other's will re-test.
Fatigue and foggyness is a large issue with Lupus and if your stressed it thrieves on depression so you'll feel your symptoms worse, learn to place yourself as so many of us have learnt to.
I'll add some info below on Lupus itself to help you understand it more and by reading the threads you'll see what different condition's will cause.
((Hugs to you Terri)) xx
Last edited by Peridot20_Gem; 05-17-2011 at 03:09 AM.
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TYPES OF LUPUS
Types of lupus
There are several types of lupus. The main types are:
•discoid lupus erythematosus
•systemic lupus erythematosus
These are briefly outlined below.
Discoid lupus erythematosus
Discoid lupus erythematosus (DLE) is a mild form of lupus that only affects the skin. It causes symptoms such as:
•red, circular, scaly marks on the skin that can thicken and scar
•permanent bald patches
DLE can usually be successfully controlled using medication and by avoiding exposure to direct sunlight. DLE usually only affects the skin but, in some cases, it can progress to the body’s tissues and and organs (systemic lupus erythematosus – see below).
There are over 100 medications that are known to cause lupus-like side effects in certain people. Lupus caused by medication is known as drug-induced lupus.
Stopping the course of medication will usually help to resolve the symptoms of drug-induced lupus.
If you are concerned that your medication may be causing lupus-like side effects, discuss the issue with your GP. However, do not suddenly stop taking any prescribed medication without first checking with your GP.
Systemic lupus erythematosus
Systemic lupus erythematosus (SLE) is a type of lupus that can affect most of the body’s tissues and organs. SLE is what most people mean when they use the term "lupus".
The rest of this article will focus on SLE.
How common is lupus?
SLE is an uncommon condition, with 90% of cases occurring in women. Most cases of SLE first begin in women who are of childbearing age (between the ages of 15 and 50).
There are marked differences in how widespread SLE is among different ethnic groups. For example, in the UK:
•one in every 5,000 white women will develop SLE
•one in every 1,000 women of Chinese origin will develop SLE
•one in every 625 Afro-Caribbean women will develop SLE
There is currently no cure for SLE, but there are a range of different medications that can help to relieve many of the condition’s symptoms.
The outlook for SLE varies widely as the symptoms can range from mild to severe. Many people will experience long periods of time with few or no symptoms before suddenly experiencing a sudden flare-up where their symptoms are particularly severe.
However, even mild cases of SLE can have a considerable impact on a person’s quality of life because many of the symptoms, particularly chronic fatigue, can be distressing and cause feelings of depression and anxiety.
With good levels of support from friends, family and healthcare professionals, many people with SLE learn to manage their condition effectively.
SLE can sometimes cause a range of serious complications, such as kidney and heart disease, and the treatment may make a person vulnerable to serious infections. This is why 50 years ago SLE was regarded as a terminal condition, as most people would die of a complication in the first 10 years after being diagnosed.
Thanks to advances in treatments, now most people with SLE have a normal, or near normal, life expectancy.
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LUPUS SYMPTOMS IN MEN
Lupus Symptoms in Men
While we are discussing about the various lupus symptoms in men in this article, we will also go through some other aspects of this inflammatory disease, such as its treatment methods...
Lupus, according to records and different studies, is an inflammatory disease that is more common in women than in men. This condition strikes when the immune system of the body attacks its own tissues and organs. Joints, skin, kidneys, blood cells, heart and lungs are the common parts which may be inflicted by this medical condition. Lupus exists in four different forms, which include systemic lupus erythematosus, discoid lupus erythematosus, drug-induced lupus erythematosus and neonatal lupus. All these forms are of mild nature, except systemic lupus erythematosus, which is not only common, but also more severe than the rest. Causes of this ailment remain unknown or unspecified. Doctors assume that the condition may result from a combination of the person's genetics and environment. The following information will take you through the different lupus symptoms in men.
Symptoms of Lupus in Men
Different people may have different symptoms. Some may suffer from mild symptoms and some from ones which may be severe. Again, some symptoms may come in suddenly, while some may develop at a slower pace. To add to this, in some cases, affected people may suffer from permanent symptoms or from temporary ones. So, you see, no two cases of this condition may be alike. Also, lupus symptoms in men are no different than those in women and they basically depend upon the part of the body which is affected.
Fatigue, fever, unexplained weight loss and pain, stiffness and swelling in the joints are known to be the typical lupus symptoms. Rash of the shape of a butterfly (lupus butterfly rash) that seems to cover the face and bridge of the nose is also a typical symptom of the condition. Accompanying these, there might occur mouth sores, hair loss, shortness of breath, dry eyes and chest pain. Some subjects have also exhibited symptoms of poor circulation in hands and feet. Due to this, toes and fingers usually turn blue or white, when the body is exposed to cold or stressful periods. This is known as Raynaud's phenomenon. Other lupus symptoms in men and women may include the patient becoming more vulnerable to easy bruising, anxiety, depression and developing a problem of memory loss. Concentration is affected and the sufferer may develop hallucinations. Read more on lupus rash and lupus joint pain.
So much for the lupus symptoms in men, which are also similar to those in women. Now, let's have a brief outlook on the treatment of this condition.
Read more on:
•Lupus Symptoms in Women
•Lupus Signs and Symptoms
•Lupus Symptoms in Children
The nature of signs and symptoms greatly influence the treatment procedure of lupus. Generally, for mild to moderate cases of lupus, the patient may be prescribed with three types of medications. They include nonsteroidal anti-inflammatory drugs, corticosteroids and antimalarial drugs. Doctors might also suggest the use of drugs, which are dedicated to a particular kind of symptom of lupus. For instance, for managing symptoms like joint pain and swelling, Skin rash may be treated be using sunblock and keeping the skin safe from sun exposure. Topical corticosteroids are also used for the purpose. Severe cases of lupus are treated with the help of high-dose corticosteroids and drugs which are known to have a suppressive action on the immune system. These aggressive drugs may be combined with each other in order to reduce the dosage of each drug. This helps in reducing the side effects.
Know more on:
•Treatment for Lupus
•Lupus Rash Treatment
•What Causes Lupus
Some simple measures when taken up at home may relieve lupus symptoms in men and women. As the patient may suffer from chronic fatigue, rest is required in ample amount. Getting plenty of sleep at night and few naps during the day helps a lot in this respect. Sun exposure may worsen the symptoms. Use sunscreens and protective gears and clothing, whenever you need to go out. Do not ignore the need to exercise and inculcating a healthy diet. If you smoke, then doing away with the habit can do a great deal in the treatment.
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Cheers for your advice guys. I am registering at a new GP surgery today. I hope he will be more helpful than others I have seen.
My ex-wife and I used to laugh at the standard of care that we separately received from our local GP. If she ever had a problem the doctor would arrange for tests/specialists or anything he could do to help. He couldn't do enough. The story wasn't the same for me. It was clear that he saw me as a big, strong young man who didn't need his help. It is clear that we have a problem in the UK with the standard of care that men and women receive at some GP practices.
I have never been one to seek medical help only in emergency. I would put in and take out my own stitches when I played rugby. A recent dental appointment revealed that I have broken my jaw multiple times and have never sought medical help for this either. I am not writing this to say "aren't I a hero", just trying to demonstrate that I am not a whinger or a hypocondriac. The only reason that I would request an appointment was for these symptoms, and to be honest he wasn't interested. It was the same every time, he would do blood and diabetes tests and they would be normal so he would send me away. In 14 years of private medical insurance with Bupa my GP managed to refer me to see 2 specialists for one appointment with each and this took a lot of pressure from my wife to even achieve this. The first was an ENT specialist who put a camera up my nose and had a look about and reported all was normal. The second was a eye specialist who reported that I have adenovirus (I think its just a posh name for a cold virus) in my eye which has caused scarring etc. He didn't even tell me what type of strabismus I have and why I have it.
At this point I think I gave up trying to find an answer from the medical profession. I felt stupid for trying and in my own mind had decided that I am just "going mad" or suffering from depression which in turn must be causing all of these physical symptoms. I got my head down and carried on the best I could, I am a fighter by nature and so tried to overcome things. Starting to admit to myself that this is clearly not a battle that I am winning.
Anyway thanks again for your support guys, I appreciate you taking the time to read my waffle let alone give such kind responses. I hope I can get some answers this time but it is more likely that the NHS are going to make me feel stupid again.
Originally Posted by giggle
I am so sorry to hear about your daughter's problems. When my 2 were born I worried that they may have these same issues but they are 6 and 7 now and only seem to have inherited my family's asthma gene (that i didn't get). Your role as a parent is massive for her in the years to come, its not an easy one to live with at all but with support and encouragement (and quite a bit of understanding) she will hopefully live a normal life (whatever that is). My parents would not let me talk about it if it got me down, this was weak and I wasn't allowed to be weak. My father teased me constantly about my balance and co-ordination. He would tell all visitors that the house was a mess because he couldn't afford to repair all the things that I bumped into. My mother did her best and decided that I would be fine if they fed me well and ignored it. She tells stories about the baby that always smiled and never ever cried, apparantly I was the easiest baby in the world to look after. No allowances were made for me at all which worked well to a point but I would have loved to be able to show some weakness sometimes when maybe someone had said something horrible. Their answer would be "don't let anyone bully you, if they do, punch them on the nose!"
The temperature symptoms that she has I can really relate to. Heat doesn't come on gradually, its like someone presses a switch and you go literally from shivering with cold to red hot and sweating. My feet and hands (particularly the feet) seem to be always really cold! Diet as you say is massive, if I don't eat well I am so fatigued that I can hardly pick my head up let alone the rest of me.
You mention the difficulty with concentration, it can be really difficult. Not sure what age she is but her teachers may misjudge her. My school report always said the same thing - basically very bright but doesn't try and has poor concentration. If you have no eye contact with the teacher they think you are not concentrating and in your own world. They didn't realise that if I were to stare at them I wouldn't have been able to get through the day because the headaches were so bad. They thought that i was an expert at taking exams because I always did very well and they couldn't understand why. They were shocked (as were my parents) when I gained a scholarship to one of the best public (private for most people) school in my area and even more surprised when I did very well in my exams later on. She will be judged wrongly throughout her life and she will need constant reassurance from you. I missed out on this, my father put the final nail in our family's coffin by accusing my mother of having an affair with my best friend when i was 22 and we haven't really spoken since. No loss there for me to be honest overall but life would have been a lot easier to take if i had a parent like you who has taken an interest in the issues that she may have and are clearly empathetic and loving.
Thanks so much for your reply, it means a lot. If you want my email address thats no problem. Would love to help other kids not have to go through what I did!
Originally Posted by Peridot20_Gem
Thanks so much for your reply. I too am from the same area of the West Midlands (born in Solihull) and still live south of Birmingham so you could be really helpful to me in terms of seeing the right people and gaining a correct diagnosis.
Not meaning to put myself down, just trying to show a little humility and also respect for you guys. I didn't realise that I would get such a warm and kind response.
The one thing I can be sure about is that my neck problems aren't arthritus. When I was still playing rugby I used to visit a sports injury clinic to see our club physio. He used to look after many of the top footballers in the area from Aston Villa and Birmingham City as well as us rugby players and he felt that it was localised stiffness and pain rather than any form of arthritus. We sufferers of strabismus carry our heads on a bit of a tilt apparantly and neck problems can arise from this posture problem but again I'm not sure this is the problem with me. I don;t get muscle spasms but have always been prone to cramp, especially in my toes and a little in the calves.
The depression and the fogginess is really odd. It is a bit of a chicken and egg situation. For years I put all these things down to depression and if I could sort my head out I would magically become better. I am starting to feel like if I could lessen some of the symptoms I have then maybe the depression would lift and this fatigue would stop plaguing me. As I said previously I am very strong minded and am a very strong charachter, I get through the bouts of depression and compared to some I seem to cope with it OK. I never lose reason and never give up just sometimes I need to just to get through the next few days until the fog lifts a little. My depression never leads to anger or anything imminently threatening to myself or anyone but it is still a horrible thing to go through and even during good times it always seems to be there in the background somewhere.
All I know at the moment is that whatever it is I need help. This time I am determined to get some answers, my daughters need their dad to be healthy and strong so I will not take no for an answer.
Thanks again, really it means an awful lot!
Last edited by Big Nige; 05-17-2011 at 05:36 AM.