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Discussion Starter · #1 ·
I've been suffering from so many things, for so long and at last a doctor has suggested a name that covers all them. However, my specialist doesn't agree and doesn't think there is anything wrong with me. I know there is, and although it may not be Lupus, I was hoping I could get some advice on here. I suffer from: IBS(inc occasional bleeding), headaches, migraines, excruciating joint pain, pins and needles in my hands and feet, stiff joints, fatigue, depression, extreme intolerance to the cold, mouth ulcers, dry skin and sores on the mouth, blocked tear ducts and frequent colds/feeling as if I am going to go down with a cold. I also have recently started getting dizzy spells and my vision goes black so I can't see, until I sit down and rest. I have had blood tests which haven't shown anything to be abnormal, apart from my ANA which my specialist felt was too low at 1:80 to account for anything being wrong. I am going to ask my doctor to refer me privately, to a specialist that I can discuss all these things with, but do you think it is worth looking into Lupus further, as my doctor thinks, even though my specialist doesn't??

Please let me know if what I have said sounds like Lupus, or anything else you have experienced could be worth looking into, as I am really fed up and demoralised by the medical world right now!

Thanks
 

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Hi and welcome to the site. It is a great place to get info and support about lupus. I am sorry that you have suffered so many symptoms, that must have been really tough and so hard to cope with. It sounds as though your family doc is behind you in trying to get a solution and some treatment, which is good.

Are you keeping a symptom diary and taking photos of any rashes, swollen joints etc as that can really help to show your rheumy what is going on betwen appts.

Maybe you could ask for a doc that specialises in lupus in the ask a doc section, so that at least lupus can be ruled out or diagnosed.

IN the meantime, stay positive, you know something is wrong with your own body, you will get diagnosed eventually. Once treatment is started you will feel better. Let us know how you get on.

Take care

Deb
 

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Discussion Starter · #3 ·
Hi Deb

Thanks for your support. Do you think I should ask for a Lupus specialist, or do you not think Lupus is likely? If you do think I should, where would you recommend, as I am going to ask to be referred privately, I should be able to pick where I go.

Thank you
 

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;) Alot of the symptoms you describe sound like lupus. Has your MD checked specific blood tests for lupus?Obviously something is wrong, hope he checks you out thoroughly. When I was first diagnosed, I had tons of bloodwork. Hope you get an answer soon. Cathy
 

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Hi PH, Welcome to the board.
I am going to go out on the limb and say that yes, your symptoms could be lupus, but they could also be a few other rheumatologic diseases.
SO, I would ask for a referral to a rheumatologist who has a LOT of experience with lupus and other related diseases.
Check further down on the main page for a referral to a rheumatologist in your area.

For people who are in the process of being diagnosed, we often recommend that they keep a symptom journal, including fevers - duration and temps, photos of joints, rashes, any and all symptoms that could be documented with photos. If you are having pain, rate it on a 1 to 10 scale, you decide what is high and low.
Then, before your appt, sit down and make a separate chronological list, for your doctor's files, of what specifically has been going on and what you make of it. Include in this any and all medications which have been tried and the success or lack of it with said medication. Take this to your doctor appt with your journal and photos. Plan to leave the list with the doctor.

Are you on any medications? If so, print this up for the doctor. For my own med list, I list each doctor I see and what meds that doctor has prescribed. Alongside the doctor's name, I include the specialist and phone #. That way, if there is any question about that medication, it is easily identified as to the prescribing physician. [I keep my med list on my computer so that I can just keep a running tally without having to reinvent the wheel to get it updated.]

Once you get your referral, and your appt set, ask to be put on their cancellation list. That way, if there is a cancellation, you can get in sooner. It is a simple request, and it helps you to keep your journal up to date. That way, if you get a phone call, you can pick up and go quickly.

Take care of yourself, stay out of the sun, keep to a healthy diet, and make sure you are getting your rest. Keep your stress down as much as possible.
Sally
 

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Hello I can't see a name, so I apologise if this appears formal. First and foremost, I am so sorry that you are going through so much pain and stress. We have all been where you are now and can totally understand what you are going through. The illness takes over your life and it feels as though nobody knows how you feel.

You have made the first step by seeing your GP, next thing is to take as much advise from people on here and arm yourself with information. I do not know if you have Lupus or not, but you certainly do appear to have some kind of auto immune problem and need to take action to get diagnosed. I agree that you would be best seeing a Rheumatologist and maybe your GP could refer you to a recommended one. I have a great Rheumy, but I am well aware some of them are not so good. What country do you live in? I know you may feel as though going private is the answer, but it can be very expensive. Many people on these boards have seen numerous doctors in a bid to find one that will take the time to listen and do the right tests. It's a very emotional and stressful time waiting to be diagnosed and hopefully your GP will help you with some appropriate medication to keep you going, such as anti inflammatories and pain relief.

Please don't despair, I know it seems really bad right now, but things will get better.

Donna xxx
 

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Discussion Starter · #7 ·
Hi again

I have had lots of blood tests inc anti DNA (which was negative) and ANA (1:80) which my specialist says isn't relevant.

I did keep a journal of pain for my specialist, but she seemed to be in too much of a hurry to take on board anything more than what the blood tests said. Certainly I am going to have another attempt with another specialist, so will try again!! My journal didn't include a pain rating, so will make sure I do that from today.

I know I was also asked if my fingers went white when they were cold, and on the spot I couldn't think. However, I was holding a (chilled) can yesterday and the finger tips that were in contact were bright white. It didn't last very long, although I was aware they were numb before going very tingly; then again, that isn't always uncommon with my general aches and pains, especially in my fingers. I was wondering whether everyone find their digits go white under these circumstances, or if this is something else to add to my list. I have always have a huge intolerance to the cold, or what I perceive to be cold (which apparently is still really warm!!).

The only medication I am taking is a painkiller which worked to begin with, but now quite often won't do anything. In the past I have tried all kinds of medications, but to no avail. However, I will ensure I have a chart showing what I have tried.

Also, with regards to a face rash, I know I do not get a bright red obvious mark, but on some occassions I can get a rosy tinted/flushed look. Again, this might be irrelevant and brought on by something else, but what am I looking for regarding a Lupus face rash, and how obvious is it?

I shall put some batteries in my camera today and ensure I photograph everything for my next appointment.

Thank you for all your support and advice.
 

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Hi and welcome to the site!

As everyone has said things are certainly not quite right with your health!

It might be easier to post a new thread asking for a recommendation of a good specialist...remember to tell us what area and country you live in!

Photographs and diary are excellent idea to keep!
 

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Hello,
I don't know if you are aware of this but even if you do have Lupus the blood tests can be quite unhelpful, which is why you need a Specialist who looks at the whole picture. Nothing showed in my blood for some years despite being really ill. I had to go to London privately to get diagnosed and was started on treatment immediately. Later my bloods did show positive but they really are not a good guide by theirselves.


Lupus facial rash may just look like a healthy pink glow. It is worth you taking note of whether your skin and your general health is affected by the sun. A Lupus Doc. will be wanting to know that.
x Lola
 

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Discussion Starter · #11 ·
Hi Lola

Thank you for your advice. I have an appointment booked to arrange a second opinion and am going to ask for St Thomas'. At least they'll be able to tell me for certain, and as everything speaks so well of them, I would feel confident they had diagnosed me correctly.

Thank you everyone else for all your advice and help.

xx
 
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