Second opinion,

[Theodora23]

I'm trying to keep everything as short as I can.

I had a tonsilectomy 2 yrs ago since then my health has declined : I've lost 30 kg's, still losing atm, I cannot keep food in it makes me sick . Been diagnosed with angioedema because of horrible swelling around my face , started having skin rashes like hives and sitting in the sun makes my skin go mad. I'm in terrible pain most of the time, short of breath (recently failed the breathing test because I've fainted and my heart was racing mad , so they stopped carrying on ). Had recent pet scan , ct and MRI of my kidneys because of protein and blood in urine . Recent referral to reumy because of left arm pain , swelling and cold plus I've started losing the grip on this hand the pains I get are incredible . My bloods don't say much which is frustrating and my GP won't believe me and suggested antidepressants, which I don't agree because I live with this pains and symptoms and is not in my head. I'm waiting for my imaging results and I have seen the London bridge lupus centre which deep inside pushes me to go there because I cannot take this anymore.

Any feedback about the centre and is it worth to take all my results with me ?

So sorry for the long post but I do hope you understand where I'm coming from.

Thank you !

[Lisalou19]

I myself resorted going to the London Bridge Lupus Centre, privately. I had no where else to turn and my bloods were not helping with getting a diagnosis. I see Professor D Cruz there, and it was the best money I spent. I got a referral to him under the NHS after this initial appointment and have started treatment.

When our bloods don't show anything it becomes difficult for both us and the specialists. x

[Theodora23 in reply to Lisalou19]

Thank you , it's way too painful to live like this and normal painkillers doesn't help . Plus all my symptoms are getting worse or I get new ones . I'm losing my hair as well 😥. Thank you for your reply.

[Djlr in reply to Theodora23]

Hair loss is common with flares, most of the time we get regrowth during the times we are not in a flare, that is one of my major signals to me that I am in a flare – my bald spots are hard to cover at those times 🙄🤷‍♀️🤦‍♀️

[Djlr]

You are not out of your mind, do not let them tell you that💜

Some people can experience depression in conjunction with their lupus, but most of the time the depression is a "result of not feeling well" – not "true depression".

When you feel better, the depression usually lifts and you are your normal self. If not, and the depression stays around even when you are out of a major lupus flare, then 'yes' you may have "true" depression along with Lupus - which does need to be treated separately.

Anyone who doesn't feel well, For example, when you have the flu, or a very bad cold, most people would think you were depressed because you don't feel well. But they understand it's the virus causing you to feel depressed because you are sick.

But living with lupus, our flares cause the same type of depression symptoms because we are fighting to come out of the flare.

You have had a lot of illnesses, tonsillitis etc. –

I was having many of the same type of issues until I got the Lupus under control, once I began Hydroxychloroquine after 4 to 6 months my joint pain came under control ( not gone), taking vitamin D 3 over-the-counter 5000 mg a day, tramadol for pain when it's uncontrollable by resting, absolutely "staying out of the sun" ( it can cause any part of our body to flare – tonsillitis etc. anything heart problems, lung problems, kidney problems, etc.) not just rashes, I started Benlysta in 2012 - it has made things better, and more stable – of course not cured 🙂

Seeing the doctor/rheumatologist three times a year, the eye doctor once a year for Hydroxychloroquine toxicity, staying away from STRESS, Learning to say no – even if it's extremely important - my body has to come first, there are many things we can do to help her body.

And it takes a while to pull it back in when Lupus has gone so far like in your case, work with your doctors closely – and if you are getting the attention and the relevancy that you think you deserve, you might have to shop for Another rheumatologist - not 'every doctor' will be able to help 'every patient'.

I have some lupus friends who have seen three or four rheumatologist over that 20 or 30 years, While they've had lupus, because sometimes your rheumatologist may run out of ideas and you may need a "fresh face" to look at your situation and take you seriously again.

I'm sure we can be frustrating, because Lupus cannot be cured. All they can do is just to help us get through each flare and whatever it may bring .

You stay positive, you stay proactive, read and research all you can about your symptoms and Lupus on the Internet and how other people of handled it, the more ideas you can get, the more you can work with your doctor.

Keep a list of your symptoms, times and dates, etc.

Take the list with you to the doctor, to each doctor you see for any part of your body.

My larynx closed 75% due to lupus and I could not get air in my lungs, it took us a long time to figure it out – but we fixed it (surgery) but I had to do a lot of research and see several doctors. From what we see, it seems that Lupus attacks some of our weak areas in our body at various times throughout our lives.

We have to become very educated on health situations and all types of illnesses - but the more we know, the more we can take care of ourselves and get better.

Every day is different, And we never know what tomorrow may bring.

Stay positive, and you have to look at it like, "well this is what I've got now, so this is how I'm going to handle it".

Limiting Stress, no Sun, etc. or some of the easy things we can do to help ourselves.

Good luck to you, you are reaching out, and that's a great thing💜😊

[Theodora23 in reply to Djlr]

I'm so sorry for replying a bit late , I can barely make it through the day. Fatigue kills me I can sleep all night sometimes and next day I'm exhausted, I cannot explain this to anyone. I have new symptoms, I cannot eat anymore, uncontrolled twitching in mys arms and legs ,pain a over the body, tummy hurts, brain fog and I've begin to not like anyone at all. I'm very snappy for a minimal reason ...is way too hard to be like this but I will keep my head up .

Your words have a great and good influence and by reading them my heart just melted . Thank you !