Florencian

[Florencian]

My doctors don't think I have lupus. 1st tested years ago negative. 2nd ANA positive, 3rd ANA negative. I have a rash on my chest and all the symptoms of lupus. Will someone help me with figuring this out? Now the latest is my eyelashes are falling out plus hair on other parts of my body. I'm 63. They tell me my symptoms are old age. Thank you.

[Spanielmadlady]

Hi.Ana can flit between positive and negative and shouldnt be used alone to diagnose lupus.you need DS-DNA tests as well as compliments and immunoglobulins.is it your gp or rheumatologist? Gps arnt very good at trying to understand us rheumatology is where toy need to be.There is an 11 point criteria for lupus which you may find helpful if you can identify 4.We cant help figure it out for definate I'm afraid...AI illness is very complex as many symptoms and illnesses overlap.many of us have more then 1 illness as they often go hand in hand.the average time for a diagnosis is 6 years for me it took 5

Be confident in how you feel...they are good at trying to fob you off.keep a symptoms diary and pics If appropriate.

Google John Hopkins lupus centre .

Best wishes xx

[Florencian in reply to Spanielmadlady]

I just have a GP. I will give her this info. I went to a rheumatologist years ago and he said I didn't have lupus. I don't understand a lot of the lingo that you guys use even though I've been reading your posts for years. They have diagnosed me with chronic fatigue, fibromyalgia, anemia, anxiety, hypothyroidism, etc. They don't know what's going on and give me nothing to help. My blood tests are always within "normal" ranges so they just pat me on my head and send me on my way. Thank you for your valuable time and information.

[Spanielmadlady in reply to Florencian]

Chronic fatigue and fibro are common symptoms in several AI illnesses. Hypothyroidism is AI especially hashimoto's thyroiditis. Anemia can be auto immune i.e b12 deficiency anemia and they go hand in hand . I have both hashimoto's and b12 defiency anaemia as well as lupus and sjorgens.Educate yourself so you can argue your case and question their reasoning .ask for blood results so you can check them you can be borderline normal and still suffer symptoms xxx

[KayHimm in reply to Florencian]

You are in a difficult position. The chronic fatigue and fibromyalgia diagnoses are syndromes. There are no blood tests yet to diagnose them.

Maybe it will help if expressed in simple terms since you said it is hard to understand. Lupus is a disease in which the body attacks itself. A lot of symptoms like muscle and joint pain can make other illnesses look like lupus. But doctors have to know that the body is attacking itself before making a diagnosis. There are many things they look for - inflammation in the joints, heart, lungs as well as blood tests to check for specific antibodies.

It sounds like they have diagnosed quite a bit and it is understandable that you would feel awful when those issues aren’t treated. Fibromyalgia is very hard to treat. Maybe others here will chime in with what has helped them.

It is hard to feel tired and in pain. Hope you get better.

K

[Florencian in reply to KayHimm]

Thank you

[just-typing]

Hello. Sorry to hear you have a medical person who wants you to believe that you are not sick. My wife had the same problem with her consultant. In the end I stopped him in mid conversation with my wife and asked him to tell her if she had Lupus. I had taken pics of her at different times which I laid out in front of him. He looked at them and back at me and said: Yes.Why they don't just tell you is ridiculous. Get someone to take pics and then put them in front of him. I took pics of her eyes as they go red raw. Her face when she goes grey, sleeping, spots which are raw on her back, and yes even her hair.

I hope it all works out for you.

Kind regarfs

[CecilyParsley in reply to just-typing]

I got my first lupus diagnosis doing just that after being fibbed off with CFS and CPS. When my husband slapped the photos of rashes, ulcers on his desk and I added my symptom diary, together with a strongly positive ANA consistently and a weakly positive DSDNA he had no doubts. Sometimes you have to help them to look at you and do not accept the fobbing off.

[Florencian in reply to CecilyParsley]

I will bring up the DSDNA. Thank you

[favour6]

Hi Florencian. Sorry to hear about what, you’re going through. Lupus is a very difficult illness to diagnose normally. But it would be nice if diagnosis was made earlier so people would not suffer for many years.

For me, I suffered for 13 years before a different Rheumatologist to my previous one could diagnose Lupus. By then, it was so severe for me, that most of my organs were effected, e.g: brain, hair falling, bore head patches on my head, skin rashes all over my both lower legs, very ill with pneumonia, lupus nephritis( lupus affected my kidney). This was 2015.

Meanwhile, over the previous years, I suffered miscarriages, Temperature of unknown origin that eventually settled by it self after several weeks of admission in hospital, thyroid eye disease with double vision(treated), Hyperthyroidism ( that eventually, I had my thyroid removed, that now I have hypothyroidism and on thyroxine).

Keep a diary of your symptoms please, because the symptoms come and go. So take pictures too. I wish now, that somebody told me to do all these all those years when I was suffering. I trusted my doctors.

Please insist from your GP, to be referred to a Rheumatologist.

If any Rheumatologist is not actively trying to find what’s wrong with you so as to put you on a proper medication, please request for second opinion. Even if you have to go to London(St Guy’s Hospital), you do that.

I did that, at the last hour when my Lupus was affecting all my system. I wish, I sort second opinion earlier.

If Lupus is diagnosed earlier and treatment started earlier as well, people will not be put through all these years of suffering. In my own case then, the doctors will always say, that I am a ‘mystery’, and that my blood results are ‘equivocal’.

The best thing to do at that stage is to be referred for second opinion to professors that have known and studied about Lupus over the many years.

Lupus sufferers should be able to get treatment earlier so that they don’t go on suffering for many years and having more and more complications and disabilities because of Lupus that can be controlled / stopped with medications that are easily available and affordable.

Take care and look after yourself.

Sending you hugs🙏🏼

[Florencian in reply to favour6]

Thank you for your reply. I'm taking it all in. Now I'm trying to look into these drugs. I'm afraid to take a lot of things. I also have tinnitus. I hope to God these drugs don't irritate that or I cant even help myself if I do get help. Thanks again for your support.

[favour6 in reply to Florencian]

Hi Florencian. The doctors will guide you when it comes to medications’s side effects and interactions. You can as well ask the doctors, the direct question about any medication’s side effect or interaction with any other medication that you are already taken. I pray to God that you find the right answers to your numerous questions. Look after yourself. Sending you hugs🙏🏼🙏🏼

[Florencian in reply to favour6]

Hi Favour6. Thanks for your input. Yes, I know the doctors will go over the basics. The only thing is a couple of the drugs mentioned on this site I've researched. I have to wonder what's worse. The drugs or the disease! There's one that I can't remember right now but you all talk about it. It begins with a ch and it's a really long word. It scares me.But I'm to the point that I must give these things a try. Especially now that I'm pretty much bedridden.

Thank you for your concern.

Mary

[CecilyParsley]

Hi Florencian, I understand totally how devastating and frustrating it is to be fobbed off with the illnesses you describe when they do not entirely fit your symptoms. If your GO is not conducting the right type of blood test then they will not show anything. You need a referral to a Rheumatologist so that they can do the tests to discover what you actually do have rather than guess work. Good luck xx

[Meg52]

Hi FlorencianI know how frustrating it is to not feel you have the correct diagnosis. I was diagnosed with fibromyalgia and chronic fatigue when in fact I also had lupus. You may not have lupus as many of these conditions appear similar or overlap, but make sure whichever rheumatologist you see is experienced in lupus as not all rheumatologists are lupus experts.

I agree with others about taking photos, I used to try and describe how much my neck and face swelled, but when I actually took some before and after date stamped photos with me they were shocked.

I hope you’re getting some help for the conditions you have been diagnosed with as they all cause problems. I was prescribed Amitriptyline and pregabalin for fibromyalgia but didn’t get on with pregabalin and it was changed to gabapentin.

It’s not easy being in pain and feeling tired. Take care. Sending you gentle hugs 🤗🤗

[Florencian]

Thanks to all for your input re my possible lupus diagnosis. I have been keeping a diary since about 2008 to no avail. If there is anything else you could help me along with please feel free to do it. I'm lost and very alone. I have a caregiver but she helps with food prep and chores. My family cannot deal with my dilemma so they stay away.You have been my only support.

Maybe I have chronic fatigue syndrome and a rash on my chest? But I don't think so. God love you all. Mary

[Meg52 in reply to Florencian]

Mary

Please post anytime you feel the need. Whilst unfortunately, we can't diagnose your condition, we can offer understanding, support and a listening ear anytime, which we all need sometime or another. Meg 🤗🤗💕xx

[Florencian in reply to Meg52]

Thank you Meg52. I really appreciate it.

[KayHimm in reply to Florencian]

One way to know would be to biopsy the rash on your chest. I don’t know if your doctor will refer you to a dermatologist. They have such strict guidelines in the UK. A dermatologist might be able to say at least if the rash looks consistent with lupus or connective tissue disease. Many years ago a dermatologist with a lot of experience in autoimmune disease noted my facial rash was “consistent with connective tissue disease but could not be more specific.” That helped me and my rheumatologist. So it is worth a shot.

Best of luck.

K

[Florencian in reply to KayHimm]

Yes! That's what my first step was going to be. I had an appointment with a dermatologist but they canceled and rescheduled. It seems odd to me that I have a rash on my chest but not my face or anywhere else? So many doctors discount lupus because I don't have the butterfly rash on my face! That is so upsetting to me. I read that approximately only 50% of lupus patients have a butterfly rash. But they don't believe me. I should add that I live in a small coastal town. The medical help here is frightening. The doctors are either right out of school, ready to retire or just don't give a damn. Or they are physician assistants or something else with a bunch of letters after their name.The closest city is about 50 miles over a small windy horrible pass that I cannot drive anymore. The good news is we just got a dermatologist! Thanks for your note. A biopsy would be great. Not to mention my skin has been really weird just about everywhere on my body from the waste up?

[KayHimm in reply to Florencian]

That is terrific you will eventually will get a appointment with a dermatologist. There are many things they look for with these rashes. It isn’t just the malar rash. I have had rashes on arms from playing tennis while covered in sunscreen that the dermatologist called my rheumatologist about. I have other rashes that were rosacea.

Have the dermatologist tell you what they think it is, if they can biopsy it and if it could be consistent with autoimmune disease. They don’t usually biopsy a rash on the face because of scarring. With it being on the chest, they might.

What are your other symptoms?

[Florencian in reply to KayHimm]

Hi KayHimm. Thanks for your insight. Skin wise. Other symptoms are my skin feels so thin. If I have an itch, I have to be careful not to scratch and just rub for fear that my skin will start bleeding. I kind of feel itching all over sometimes. My eyelashes are falling out like crazy, actually I'm losing hair everywhere. My eyes look puffy and strange. Also, my vision has worsened pretty much in the last year. Stronger readers mostly. I don't seem to have as much pain as a lot of you guys. I just feel like I have a really bad flu 24/7. I think fatigue is my biggest concern and I catch some kind of a flu all the time. Really bad sinus problems. Very anxious. You name it, I've got a problem with it. I must admit that the years of feeling like this with no light at the end of the tunnel has spurred some depression. Which is making matters worse. I gave up for awhile but I thought I'd give it another go. Are you sorry you asked? Kidding .I wish I could find out from kind people like you first hand what are major signs of lupus. It seems to me that these symptoms fit in with, MS, fibromyalgia, chronic fatigue, hypothyroidism and on and on... also, now I'm not so keen on going to a bunch of doctors with covid out there.