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Unfortunately I have just received a diagnosis of SLE lupus after visiting the rheumatologist and I'm currently devastated. My symptoms, the malar rash and a low lymphocyte count were enough for an initial diagnosis. I'm
Currently exhausted and in a lot of pain struggling to come to terms with things. First my assault then the heart condition and now this in a period of under 4 months. Life really isn't fair.
I am truly sorry Dave I know you have been struggling. There is really nothing I can say to ease your pain except I'm thinking about you and praying for you. Now that you have a diagnosis perhaps they can begin to treat your symptoms. :hugs:
TooMuchToLiveFor
08-03-14, 14:37
Dave, I am very sorry to hear of your diagnosis, but the good news is---you can now start receiving treatment and help!
Since you are in a devastated state, please make sure you treat yourself as a whole in order to be as well as possible. Depression and anxiety most always coexist with intense illness, but your doctors will help you find relief from both.
Since you said this is an "initial diagnosis" did the doctor leave any room for any other explanation?
I thought the blood tests were negative though?
Dave, sorry to hear about the initial diagnosis. I thought that the blood tests had come back all fine? Please take care and don't forget to treat the anxiety, as your mental health will be important in fighting any physical disease. Many people lead very normal lives with lupus. You can handle this.
Hi Dave
I'm sorry to hear that. At least now you can get some proper treatment. As others have said though, you still need help with your anxiety, which I know is understandable in the circumstances.
I'm sure that once you have a treatment plan in place, and you start to accept your diagnosis, things will improve.
Please keep us all up to date on your progress.
MRS STRESS ED
08-03-14, 19:40
Very shocked too hear your news ,as you said everything was clear when did they tell you this ?
The ANA test was repeated and returned positive along with a low lymphocyte count. These 2 factors along with my other symptoms of a malar rash, joint pain and fatigue are enough for a diagnosis. I'm very frightened and scared about the future. The prognosis for men seems to be worse than women, the fatigue has really taken a grip on me. My dreams of a career and family of my own one day seem to have faded.
Katesa- I'm so sorry to hear of your brother, that is devastating news. Life really isn't fair. Personal health is taken for granted so much, everything else is insignificant
TooMuchToLiveFor
08-03-14, 20:09
Since this is an initial diagnosis, did the doctor leave any room for another explanation?
What are they planning to do from here?
I really don't know it's been such a difficult day I haven't really thought about what happens now or what the future holds
Thanks Dave. Life can be so cruel sometimes can't it?
But as hard as it seems right now, that is why we have to make the best of it no matter what hand we are dealt.
You can certainly have a career and a family with this Dave. I have both. My mother in law had two sons after being diagnosed with the same thing as you and still has a healthy, happy life with a wonderful marriage. The owner of this board has heart failure and crohns.
MS sucks and Lupus sucks. But they aren't terminal cancer or a brain tumour. They may limit our lives but they will only destroy them if we see ourselves as destroyed.
Our bodies are flawed but thankfully not broken and there are many treatments to help.
I would ask for further testing if I were you though to make sure this diagnosis is correct. They were apparently wrong only a week ago.
In the meantime though, take a look at these two quotes from reputable sources -
1. How do the symptoms vary between males and females? Edison, NJ
Some time ago physicians thought that men had worse lupus than women. This is not the case. The symptoms between the two sexes are similar. The course of the disease may vary in men and women, but that is not the same as the symptoms.
from http://www.lupus.org/resources/15-questions-men-and-lupus
and
Most people with SLE lead active, normal lives. The outlook for people with SLE is much better than it was in the past. Modern treatments are more effective. For many people with SLE, symptoms are mild or moderate with little risk to life.
from http://www.patient.co.uk/health/systemic-lupus-erythematosus-leaflet
Dave, I've been following your posts and I'm really sorry to hear this. I can't top Katesa's post for advice, but please don't let this defeat you. You know what you're dealing with now, you can get the specialist help and support you need and start to live your life again. Please hold onto your wishes for a career and family, this can and will still happen.
Kate, I am truly sorry to read of your news too, how devastating. My thoughts with you and yours.
Ah Dave, I'm incredibly sorry to hear about your diagnosis, I can only echo what the others have said. You still have a future and things could of been worse, I'm sure you will get the best treatment and will be able to live normally again.
I know it must be beyond hard for you at the moment, but I'm sure everyone here, and your family will do everything they can to help you :hugs:
The ANA test was repeated and returned positive along with a low lymphocyte count. These 2 factors along with my other symptoms of a malar rash, joint pain and fatigue are enough for a diagnosis. I'm very frightened and scared about the future. The prognosis for men seems to be worse than women, the fatigue has really taken a grip on me. My dreams of a career and family of my own one day seem to have faded.
Katesa- I'm so sorry to hear of your brother, that is devastating news. Life really isn't fair. Personal health is taken for granted so much, everything else is insignificant
How did you get the second lot of tests done and the referral to see the consultant so quickly? Did you go private?
Did the doctor say the prognosis is bad or is your anxiety running wild with speculation? Seriously plenty of people with Lupus live full normal lives. There are medical treatments and patient support groups out there to help you manage your condition.
I went private to see a rheumatologist as quick as possible. He said the prognosis is often slightly worse in men with more severe forms of the disease and organ involvement. The fatigue is really getting me down. I feel like I've been awake for 24 hours no matter how much I rest or sleep
I went private to see a rheumatologist as quick as possible. He said the prognosis is often slightly worse in men with more severe forms of the disease and organ involvement. The fatigue is really getting me down. I feel like I've been awake for 24 hours no matter how much I rest or sleep
Did he say you have the more severe form of the disease?
I assume they are going to start you on some kind of treatment so you will hopefully feel better once that starts to kick in.
Dave, sorry to hear of your diagnosis. Never fun to find out there's something other than anxiety causing the problems. I suffer with fibro, so I understand the constant exhaustion and pain. I don't remember the last time I acually woke up from sleep feeling like I actually slept, haha! So I can definitely empathise with you on that one!
But I can tell you that something like Lupus is manageable. It isn't easy, but there is treatment available, there are things you can do to reduce the symptoms, and you can live a relatively normal life. The first part is to work on your attitude toward the diagnosis. It's always hard at first, but working to accept it and live with it is a great way to start feeling better. I have a friend wirth Lupus who got counselling when she was diagnosed with because she was so overwhelmed by the fact that her symptoms couldn't be 'fixed'. There was nothing she was doing to cause them, they were just there. She's said that counselling helped a great deal in terms of accepting this and minimising anxiety and negative attitude toward it, which actually helped reduce the severity in some of her symptoms. Interestingly, stress can actually make the symptoms worse, and it does sound like you've been under a lot of stress lately, especially with all the uncertainty around this diagnosis. You may find that as your stress decreases, the severity of your symptoms will too.
---------- Post added at 11:05 ---------- Previous post was at 10:55 ----------
Also, it may make you feel a little better to know that recent research indicates that the majority of Lupus sufferers have a normal lifespan equivalent to those without Lupus. Those with a lower lifespan and more severe complications tend to be those who are diagnosed in the late stages. You're still very young, and this early diagnosis means you have a really good chance of having a normal lifespan and good management of symptoms.
Interestingly, I've learned that one of the biggest changes someone with Lupus can make is reducing exposure to sunlight. Apparently sunlight worsens the symptoms of Lupus - including muscle pain and extreme fatigue. By limiting your UV exposure you can reduce the severity of these symptoms.
Dexterjames
12-03-14, 11:20
That really sucks sorry to hear about that i kinda feel brain struck.
I am worrying now i am not thinking of my self just the fact that lots of us had the same LIST of symptoms you did including me and the fact that why the hell did you GP not see this sooner and let you suffer for so long without propper treatment,I been suffering with symptom like yours for months 6 in total i don't no where to go now or what to do i am confused about this whole thing.
If it were me, I would want copies of all the blood work and test results. I'd want to know how something like this was missed? Was it two different labs that tested it? How could things change that fast and drastically in such a short time? I'd be pissed! And a second opinion, especially with a serious diagnosis, is always in order.
Positive thoughts
Dexterjames
12-03-14, 12:54
If it were me, I would want copies of all the blood work and test results. I'd want to know how something like this was missed? Was it two different labs that tested it? How could things change that fast and drastically in such a short time? I'd be pissed! And a second opinion, especially with a serious diagnosis, is always in order.
Positive thoughts
I agree totally Dave gets diagnosed with anxiety then ends up having to pay for private health care when the NHS and GP should have picked it up months back this is discusting and Dave you are with in your rights now to take legal action against the NHS and your GP you deserve it no 1 should have to pay out when this country has its own Health care system ,for goodness sake what the hell would dave of done if he could not afford private health NHS is terrible i am thinking of selling my car now and going private health.I hope you get all the help you deserve now Dave i wish you well.
I agree totally Dave gets diagnosed with anxiety then ends up having to pay for private health care when the NHS and GP should have picked it up months back this is discusting and Dave you are with in your rights now to take legal action against the NHS and your GP you deserve it no 1 should have to pay out when this country has its own Health care system ,for goodness sake what the hell would dave of done if he could not afford private health NHS is terrible i am thinking of selling my car now and going private health.I hope you get all the help you deserve now Dave i wish you well.
If all the original tests came back negative (which is what Dave had been told) how is the NHS/GP supposed to 'pick this up' months ago?
The smallest amount of research will tell you Lupus is very difficult to diagnose and there is often a time gap between symptoms starting and official diagnosis. Plus the symptoms are often vague and overlap with many other physical/mental illnesses. Given the negative blood tests anxiety was a far more likely diagnosis.
It isn't ideal but there is no 100% certainty in medicine and to suggest the GP or NHS is incompetent is just wrong in my opinion.
I mean playing devils advocate here, how do we know the second lot of tests performed privately are as accurate as NHS labs and how do we know the private doctor isn't a quack willing to 'diagnose' anything for a fee?
The point being. Within a month's time, several doctors, all sorts of medical tests from blood to neurological all showed nothing. Then a diagnosis of Wolff-Parkinson-White. More tests and still nothing else evident. Then a diagnosis of Lupus.
If it were me, and I've been diagnosed with serious physical issues, a second opinion would be in order. If you can pay privately for one rheumatologist then certainly you can pay for another or at least have your GP go over all the test results and try and find out what the heck happened. "Something" is just not right with what's taken place based on what I've read throughout the threads.
I agree, this is not about pointing out negligence on the part of the medical professionals. This is about being your own advocate in situations like this. When I was diagnosed with cancer, I got a 2nd opinion at a Comprehensive Cancer Center, in fact, the very best in the country. They went over all my test results and discussed everything with me. I sought treatment there. I'm convinced, had I not done this, I wouldn't be here today.
Again, in a situation such as has been described, after all the tests, doctor's visits etc., I would want to know what's going on and why.
Positive thoughts
TooMuchToLiveFor
13-04-14, 03:53
An update, Mr.Dave?
Unfortunately I have just received a diagnosis of SLE lupus after visiting the rheumatologist and I'm currently devastated. My symptoms, the malar rash and a low lymphocyte count were enough for an initial diagnosis. I'm
Currently exhausted and in a lot of pain struggling to come to terms with things. First my assault then the heart condition and now this in a period of under 4 months. Life really isn't fair.
Hi Dave,
I'm so sorry to hear this difficult news. I don't have any knowledge of or experience with this condition, so I'm afraid I don't have specific insight to share.
The impact of the news you've received must be tough.
I wasn't sure what to expect when, after a very stressful 1.5 years of unexplained pain, and endless tests, I was finally diagnosed with fibromyalgia.
Similar to your worries about having a family one day, I had read that women with fibro can have severe difficulties during pregnancy, and I didn't know how I'd survive if I wanted a family. The good news is, I've since met and married a very supportive guy, and we now have a very healthy 20-month-old boy who brings me more joy than I could've imagined.
Once I grieved my losses and made a sort of 'peace' with my diagnosis, I did manage to find joy in day-to-day life, even as I'm forced to find ways of coping with my limitations. I share my story in hopes that it'll give you a spark of hope as well.
So if you can, think of this as a grieving period, and allow yourself enough time to grieve.
Once you near the end of that grief, your life will look different than you expected, of course, but it will also look brighter than it does now.
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