Real answers.

[Binkey]

Sorry folk's,thought I woud get real answer's to Lupus related problems,it does'nt seem to be happening.I don't blame individual's but,if Lupus UK can't help who can. Could somebody give me real medical advice related to the Lupus?I am really frightened at the moment as i have more diagnostic problems,if Lupus UK can't help me,please tell me who can?The in-between waiting for appointment's and bad diagnosis does'nt help.Should I throw my hand's up in despair,that's how desperate I feel.Sorry but,how can I be positive when I don't seem to be able to get any answer's.

[Hidden]

Dear Binks

Sorry to hear how worried you are. Gaining specific medical information can take ages sometimes and I know how much you need to understand what is happening. Maybe there will be more medically trained people on this site in the future, but I think it very unlikely that even they would be able to comment on an individual basis. This is because Lupus symptoms are very unique to each person.

In my experience it has always helped to talk things over with my GP (if you don't have a good one, get one fast) and I have been fortunate enough to be able to speak to my rheumatologists secretary if I am really concerned about something. I know not all departments offer this, but it might be possible to bring forward an appointment. I also want to say that I have sometimes experienced a delay in diagnostics and treatment while the evidence is collected, my Rhuematologist plays detective while I travel from one department to another for a while. (I'm off to nuerology next, so am waiting for another installment myself in three months time)

We might not be able to help with all the medical in's and out's, but I hope you'll carry on using the site and keep us posted.

Best wishes

Val

[Binkey in reply to Hidden]

Thank's for your kind reply.I have an appointment with cardiology on 9/1/12.What a way to start the New Year the,the reumatologist in February(unless I have to go sooner).At the moment ,dealing with the bouts of confusion and depression(paranoia)which I never had before the Hydroxy.Perhap's it is just coincidental.Stay well.

[NeeNaw]

Hi Binkey

Those feelings that you are going through are so familiar to me, the pain, the confusions, the fear ..... everyday another thing thrown into the mix. It is so very very difficult. As for feeling that Lupus UK cannot help or give you answers, I can only assume that you are in the early stages of diagnosis, and one thing that no-one tells you is that lupus is as individual as everyone's fingerprints .... no two people will have the exact same symptoms or follow the same path in their disease. Luckily there are more treatments available now than ever before. We were once treated with steroids and anti-inflammatories only as so little was known about the disease. I have been living with my disease for about 12 years now .... longer if you count the time when I was misdiagnosed and went through the feelings of being a hypochondriac ..... I was determined to fight this disease tooth and nail, and I spent so much time fighting, and being so weak, and in constant flares and slowly and I mean slowly realised that stress made my disease worse. Whilst the professionals can give us pills and tests, it is down to us to make life style changes. It seems stupid and inane for someone to tell you that lifestyle changes can make a difference to the ream of symptoms, but it does. Even changing your thought process can take a long time, but believe me it does work. I have got to the stage where the lupus is like an elephant in the room, you know it is there, and although you try to ignore it, it is still there, but over time you learn to live with the elephant and accept that it will make large messes, (if you get my drift) but with patience, the mess can be cleaned up and you can go back to acknowledging that the elephant is still in the room. You have to put yourself first, you have to tune into your body and know every minute change, but learn to relax and rest, even if you are having good days, rest is vital. Many prayers for a more optimistic and relaxed future. God Bless

[EOLHPC in reply to NeeNaw]

Neenah: reading your reply, I feel as if you're writing to me! I was diagnosed almost a year ago, but my 90 yr old mother tells me I was also diagnosed as an infant and as a teen. She just was in denial, so told no one. Meanwhile I've been managing as best I could, but getting the sort of reactions you describe (misdiagnosis, hypochondria etc). In the past 10 months, as I've started treatment and also had a really bad infection start up, I've gradually come to see how true the things you say above are! So, take heart, binkey: we're in this together! And these replies to your ? sure do help me keep calm & carry on!

Xo

[Binkey in reply to EOLHPC]

We are not alone and yet we are made to feel as though we are.I know it is a difficult desease but,it is a desease and yet I read all the time that sufferers are given such a hard time with people like the DLA or mis-diagnosed.I hope you are well yourself.

[NeeNaw in reply to Binkey]

Binkey it is very very difficult trying to make people understand ..... it's amazing how many people have never heard of it .... when I try to explain that it is a disease of the immune system the usual reply I get is "so is it like AIDS??" I give up trying to explain now .... I no longer feel that I have to tell people what is wrong with me .... that was a very stressful thing for me when I thought that people did not understand and then I thought ..... why should I worry about whether or not they understand it. As for the DLA, they are clamping down all over, I live in Northern Ireland and there is a man who has a bullet lodged in his spine which limits his movements and he had an assessment by the DLA and they said that if he got a wheelchair, he could work!! Now they did not stipulate what work he could do or how he would get to this imaginary work!! Another guy who was blown up in Afghanistan and lost both his legs and has other injuries and DLA said that if he got prosthetics fitted, he could work!! That's the mentality you're working with!!! Just don't give up, and stop worrying about others, if you are applying for DLA and get turned down just get a local councillor or MP to fight your case for you. God Bless xxx

[Binkey in reply to NeeNaw]

We have to find a way of making people understand what Lupus does to the sufferers including DLA.I have not had to deal with DLA(yet)but,it seem's to be horrific what Lupus sufferer's have to go through.I really am trying to be optomistic but,because I have to see a cardiologist in January it just jolt's you back.Stay well.

[Blancanieves in reply to NeeNaw]

Although I agree with the main - I have to ask, these new treatments - what are they? I have been diagnosed for the last 4 years and the only things that my Rheumy gives me are Diclofenic, Co-codemol with parecetemol and now, again, hydroxychloroquine which makes me feel nauseas, my hair fall out, I don't pass water and am constipated and feel that everything is a bit surreal. Not a happy pill, then! I would love to know what these 'New Treatments' are as my Rheumy in Manchester doesn't have a clue.

[NeeNaw in reply to Blancanieves]

Hi Blancanieves

I can only tell you what treatment I have received in the past, some successful, some not, some with no side effects others with horrendous side effects. You have not listed prednisolone, but I have been treated with methotrexate, tabs, injections and infusions, cyclophosphimide, tabs, infusions and injections, immunoglobulin infusion, rituximab infusion, cyclosporin. I have only listed the management treatment regimes that I can remember. Hope that helps.

[Binkey in reply to Blancanieves]

I was told by my GP not to take paracetemol along with co-codemol although both had been prescribed by another GP.Ever since I have been on the Hydroxychloroquine I never feel as though I am passing all my fluid intake(I drink a lot of water)and my stomach is constantly uncomfortable.I did refuse initially to take the Hydroxychloroquine but, as my reumy so rudely put it,what did I expect them to do if I was not prepared to try the medication.So,here I am,now waiting for cardiology and opthomology and reumatology.What next?

[Trace]

Hi Binkey

Sorry your struggling hun, I know how worried you are. As has been said in the other answers, everyone is different so their symptoms will be different. I know that your GP is not the best & that makes it harder to deal with.

Is your rheumy at the Lupus clinic at St Thomas' hospital? They are very good there & will listen to what is going on with you both physically & mentally (I know your struggling with the hydroxy).

Binkey, try & be strong, have you got family or friends who you can share your fears with? It's very important to have people who may not know about Lupus but are happy to listen to you when your feeling so low.

Best wishes

Trace

[Binkey in reply to Trace]

Hello Trace,I am not very sociable at the moment but,it will pass.I hope you are well.

[Sue2803]

It is awful when you are first diagnosed. I think, in hindsight, my Lupus started about 30 years ago but I was only diagnosed 3 years ago. It is a huge learning curve, and is constantly on your mind, but you do learn to cope and to adjust your life somewhat.

Just hang in there, there is always someone on here who will listen, even if you just want to have a good moan.

Good luck

Sue

x

[Binkey in reply to Sue2803]

Thankyou Sue,I just feel I must stop moaning and concentrate more on keeping positive but,as I am sure you are well aware of,it is hard to be positive when you don't feel well.

[lupylupus]

Hi Binkey!

As you can see above....you are not alone and we are all here to support you.

I can fully understand your fears. I walked about with this disease for at least about 15 years before I was diagnosed or had any idea what was making me feel so bad (and why I was losing all my hair.) When I was eventually given a diagnosis I was not given any information about what it meant or what symptoms I might expect, and there was no confirmation that the symptoms I did have were all Lupus related!

I have since had investigations confirmaing some and have educated myself most of the rest. Once you understand that it is not straight forward you will learn to recognise all your own symptoms. Just listen to your body and make sure you rest when you are tired!

The best advice I can give you is that once you are on the right medication for you, your Lupus symptoms will improve and you will realise that some of the symptoms you did experience were down to Lupus and not your imagination.

I feel tons better since I was put on Mycophenolate and after lots of deliberation about taking it I feel tons better. I am hoping next time I go back to the hospital that I can negotiate reducing it!

The idea is to get you stablised and in remission and then reduce the medication. It can sometimes be a bit of a journey but it will be worth it in the end.

Just hold on in there and have a rant on this site whenever you want to.

BIG HUG!

Margaret x

[Binkey in reply to lupylupus]

Thankyou for your kind reply.I am so anti taking pill's because I have had so many bad reaction's when I have been given various medication's in the past.I will speak to the reumatologist about this and the cardiolist may be able to shine some light on the way I am feeling.Stay well.

[NiksB]

I feel for you but you are not alone and you will have bad and good times ahead unfortunatly you are going to have to accept that, now saying that I think it is how you deal with your illness.

I agree getting a diagnose is all you want and when you get Lupus then you wish it was something else, I often wanted a magic wand but nothing happens quickly with appointments, treatment and even tests there is a logic in the madness often it takes awhile for your body to build up the medication for the true signs to be seen.

The good news for you ( I dont mean to sound condersending) is you have a name to work with I got most of my information (I have mixed tissue disease showing all the signs of Lupus) so go to the lupus websites you can buy books and the ones they suggest are great they are correct and easy to read. I have gone back and read again and again because its a difficult illness to get your head round. The fact is no one person has all the answers because we have all taken different routes to get here but you will need support on bad days and we will be here.

So it is a long road but you will get there lets face it whats the altenative let the so and so win not likely your stronger than that and the reason I can say this not knowing you is you will be surprised what you can cope with. ( I thought I was dying I had a few heart problems and we had started changing the house so I could move around a shower would exhaute me before I was really ill I went to the gym and walked 2 miles a day to work had a really active job, now having a shower or meeting friends is tuff but you reevalueate your life and whats important to you) sorry no answers for you but the fact you have left a message here means your a fighter and you will need it.

All the best NiksB

[Binkey]

The one positive thing from all this is that,when the hospital actually diagnosed me with Lupus I realised feeling so aweful was not my imagination but,then all us Lupus sufferers have to go through the motion's of the desease not really being recognised.I know it is a tricky desease but,try telling all those poor soul's that have to deal with DLA or ignorant GP's.I have no intention of giving in to this desease.Stay well.

[senorascully]

Hi - sorry you're struggling.

I found that the Lupus Nurse is a great source of information and can act as a go between you and the consultant.

They will find out all sorts of information and feedback to you in a common language.

Think the main clinic in London has a nurse you can contact online??

Hope it helps.

Debbie x

[Binkey in reply to senorascully]

Thankyou so much for trying to help.I think i am still in shock having been told i will have to see a cardiologist.I never had a heart problem before.I have been on the Hydroxychloroquine for about three month's now and can only say that I am not sure about this medication.Admittedly,the aches have been a bit less but,I have had really bad day's.One pill semm's to be placated by another with this desease.I will not go there with pill's so,hopefully,I will get some advice somewhere as to alternatives to pill's.

[Paul_Howard Partner LUPUS UK]

Hi Binkey,

I'm sorry to hear that you are still having a difficult time. You are right that we can't provide medical advice ourselves here at LUPUS UK, because none of us are medically trained, but we can put you in touch with medical professionals, such as one of the lupus nurses. I am now going to send you a private message too.

As for improving people's awareness of lupus....this is something we work tirelessly on. Better lupus awareness begins with you. The more people you can tell about lupus, the more people will be aware. It is very frustrating, always having to explain, but progress is being made and things will continue to get better, the more people talk about lupus. There is a range of promotional posters and factsheets available from LUPUS UK that are free for people to put up in their workplace, doctor's practice or local community centre. If anybody wants any of them, just send me a message and I'll post them out.

[Hidden in reply to Paul_Howard]

Paul yes a fact sheet and posters would be great please send to me be great to make others aware thanks

[deadasadodo]

Hi Binkey

Lupus is a personalised condition. I have been having treatment for SLE for 8 years. At the beginning I did feel like a lab rat as the consultants are trying to "experiment" and find out what coctail of drugs works for you, they do not want to start you off on all treatments until they know which ones work, and lets face it the less drugs we take the better for the long-term.

If it is any consolation I had a bad patch a few years ago after a bout of percardicits, and was sent to the cardiologist, I had an EGC (where they put the little pads on your chest and leg) and saw a cardio nurse, she told me that the ECG suggested I had had multiple heart attacks over a period of time and my heart might be damaged. I went back for any echo cardigram (a scan similar one pregnant woman have) of my heart, saw a consultant and she said I had an amazingly healthy heart for a 40 year old (did a lot of exercise in my formative years!), just to be on the safe side as my ECG was still suggesting I had had multiple heart attacks, I went for another Echo, but this time they slowed my heart down and then speeded it up (used beta blockers), that felt wierd but not painful, again talked to a very helpful consultant and was told I had a very healthy heart. So basically if I ever have ECG it will always show an abnormality- I am guessing this is due somehow to the Lupus.

Apologies for the long winded reply, I think the main thing I am trying to say is Lupus is a sneaky little bu**er and it is the great pretender. Listen very carefully to what the medical team tell you and just for the next couple of months make yourself your number one priority.

[Binkey in reply to deadasadodo]

I feel sorry for anyone that has to go through this and you certainly have.I will see the cardiologist on 9/1/12.I really have not been feeling well and these strange chest pain's do not help.There is definately something going on,I know by my own body something is not quite right.Let's hope I will get some answer's.I know it will not make the Lupus go away but,perhap's I will be able to deal with these little 'surprises' a little better.