Uncertain what is causing my problems. Could it b... - LUPUS UK

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Uncertain what is causing my problems. Could it be lupus?


Any advice?

adeangeloadeangelo 5 hours ago 0 Replies

I have been having a lot of memory issues especially names and faces, coming up with the right word, problems processing information, and problems with normal everyday tasks. For example, I tried to put my cellphone in the dishwasher instead of the coffee mug. I also got confused and tried to put something away in the pantry that belonged in the fridge. I've also been having a lot of pain in my hands, wrists, hips, knees, and balls of my feet. It hurts to walk on bare feet in house. Lastly, I have inflammation on my scalp and psoriasis on my nails. One of my blood tests showed that I had high iron level (was told this is ferritin). I'm tired a lot of the time and have to urinate more frequently than what is probably normal.

I had a blackout and severe headache this summer and almost passed out. Thought I might have had a stroke or something. I've also hit my head a few times over the years. Most recent hit was on back of head in 2011. I should have gotten it checked out then after that, but I was stupid and didn't. Neurologist said that she thought that depression was causing my memory problems and prescribed me Lexapro. MRI came back clear and Dr told me that she thought I "looked fine" and ruled out neurological causes/problems. Maybe the machine I had it on wasn't strong enough to show enough detail. I don't know. She told me I should increase the Lexapro and follow up with a psychiatrist. I don't feel fine and am scared about all the difficulties I'm having especially at my age (which is 35). My maternal grandmother died of lupus and my mother has fibromyalgia and Rheumatoid Arthritis. I am so tired of living like this and I feel like giving up. I don't know what to do or whether I can actually get the help I need to feel better. Any suggestions would be welcome.

27 Replies

Hmm, I think you should push for a referral to a specialist or seek a 2nd opinion. From what you are saying it sounds like you have real symptoms and haven't said anything about feeling depressed. Do you have any depression issues? So I don't understand why they are just giving you Lexapro instead of trying to treat your symptoms. Especially with family history of Lupus I think they should be taking your symptoms more seriously. All the things you say are happening to you are symptoms I also have with my lupus. I think that sometimes If everything doesn't show up plain as day on your labs that some doctors write you off as being fine, because they don't know how to think outside of the little box they've been educated in. That's what it sounds like she has done to you. When in reality you need to see a specialist to get diagnosed anyways. For me it took a long time to receive proper treatment and I went thru 3 rheumatologist before all of which said sounds like lupus but didn't know what to do because my labs weren't cut and dry. Finally my current rheumi figured out that because of other overlapping conditions my lupus is more complicated then the standard and my labs don't always come out as expected. I'm finally receiving agressive treatment but not until things got so far out of hand that I have lost most of my ability to function in life. So it really comes down to finding the right team of doctors for you. Don't give up! I hope you get some answers soon.

Yes I also struggle with deep depression but I find it hard to believe that depression could be causing my thinking difficulties. this Dr was a specialist, a neurologist. I've also been to two rheumatologists. First one was not good at all. Just started seeing second one. She seems better. I hope she can help give me some answers. Thank you for responding. I'm just trying to figure this all out so I can take some steps to feeling better. Some neighbor of mine recommends that I stop eating all grains stating that they are all inflammatory. What do you think?

I find it hard to believe that depression is causing all your thinking issues as well. Not to mention that depression isn't causing your physical symptoms. And depression itself can be a symptom of lupus. It took my 3 tries before I found the right rheumatologist. So hand in there. I have heard that as well about grains, really any inflammatory foods. There are books you can read all about what foods cause inflammation and which ones don't. I know before I was taking prednisone I seemed to be much more effected by foods. Like I could eat oatmeal and by that afternoon would feel a lot more swollen and unwell. Same thing with beans or anything in the legume family. I have to say I don't stay away from it all now, as the meds help keep it at bay but I do try to stay away from the things that seem to make things really bad. But it's different for everyone so you will have to experiment and try and keep track. A couple really big things is my rheumi says that people with lupus should never have echinecea or alphapha sprouts as they both boost immune response and trigger flare ups. I hope this info helps and hang in there.

Hi sorry for all your problems memory loss is awful isn't it.i was prescribed antidepressants which has really improved my depression, memory fog improved with Warfarin/Clexane still not brilliant but Hughes syndrome caused my problems mostly. Hughes can also go along with lupus too

Hope you manage to feel better soon, hydroxichloroquine improve my balance problems too

Do you have Lupus have you been tested for it?

I believe that rheumatologist ran a test for it but I haven't heard back from her yet as to results. I called receptionist and she said something about a test they ran (DSDNA). She couldn't explain what it meant but said that the dr would call me. I hope to get some answers soon.

Hi just want to say. I have this brain fog, forgetfulness and putting things in funny places. I am 62 and wonder if it's my age. I have Lupus SLE and am currently reducing prodnisalone and taking methatrexate. So it could be medication. I am in flare at the moment. What a surprise I am on sertraline antidepressant. I am moving house soon and live alone so the clearing out packing up ect is all down to me. So I am quite stressed from time to time.

So Angenelo I sympathise and hope that the medical people around you get things sorted. Wish I could be more helpful. Just hang on in there. We are all in it together you are not alone. Xx

Lexapro can cause confusion. My Mom had been on it, and it hit her hard. It can cause a lot of the confusion, disorientation, etc. My paternal grandmother AND my father had Lupus. I have it too. Ferritin can also indicate inflammation number. You didn't say you had an ANA test. I don't take meds for any of the Lupus issues - of which there are so many - because of the harsh side effects. A lot of your problems are mixed - meds and Lupus and more than likely, the "friends" Lupus brings with it - many other autoimmune diseases. You're not losing your mind - you have a sickness. It's physical and you are not imagining it..

Hi. Thanks so much for your input and support. It has been hard with noone to understand. I'm not sure if I have had that test (ANA). I will ask them about it. Thanks again

WE understand! I would actually get a second opinion before increasing Lexapro. I take Xanax only at night because I can feel that I am disoriented. It helps me sleep. My Mom was on Lexapro and I did notice a difference in her. Of course, she was an older woman. One time, she was given Ativan! She hallucinated. If your insurance allows a second opinion - and most do - then try and find another doctor. Autoimmune diseases have basically the same symptoms with different names. The ANA will indicate that you have an autoimmune disease - and it could take a while to figure out which one it is. There are SO many!

What is the ANA?

ANA stands for antinuclear antibodies. Mine have always been positive for 4 years. I don't understand how some of the people on this forum have had negative ANA. I have SLE and it's a bad case. I hesitate to take meds like prednisone because steroids can cause other issues, and a moon face. I'll take the pain killers and bear the pain rather than gain weight. I'm thin and don't gain weight, and people always tell me "how lucky I am." Not that I was ever overweight - but having SLE and so many issues with it and I've aged 10 years over the last 4 because I am sick so much does not make me feel lucky. In order to look good, I have to use a ton of make up. Not really my style. My eye sight, after cataract surgery and laser is awful. Had them both done last June/July, and am going back to the opthalmologist soon as I can. My ITP is a lot worse, and the Coumadin has caused bruises on just about every part of my body. They are now starting on my face. Do I sound "lucky?"

I didn't know that Lexapro could cause confusion and disorientation. That makes me angry that they would prescribe me something that makes life harder for me. I also read that SSRI's can cause memory problems. I tried talking to dr about it and I think they got annoyed with me. She said she thinks I should increase the dose. I've also read that it is hard to get off of SSRI's without feeling worse. I don't know what to do.

Sorry you are feeling so bad. You say your ferritin level is raised. Has this been investigated further? Look up Haemochromatosis.

Hi.. Sorry you are having problems. Has you or your doctor looked into Psoriatic Arthritis? ? When I read your post it looked like something I could have wrote!!! I have psoriatic arthritis and SLE..Psoriasis of the nail beds is often associated with PsA.The foot, wrists, hip pain is another classic give away...I don't know exactly what tests are used for PsA, other then elimination tests, where tests are ran and other illnesses are ruled out...Xrays might show some "penciling" of the DIP joints (fingertip area).I do also have the Lupus, but I think that as I have got older, I am in my 40's, and my estrogen level has dropped, my PsA is dominating more...I just got the DX for the PsA last year.But I get the exact brain fog issues as you.It is boggling..I feel like my 85yr old dad who says "Whatcha macall it"...every time he wants something he cant remember well, so everything ends up a Whatcha macall it .

Push for better testing.I know its not easy.I am in the USA, and basically you need a doctor referrals to see specialists now.Cant high ferritin levels also be associated with Adult Onset Stills Disease? An evanescent chest rash is associated with that and high evening fever...But you know, people can have very mild forms of diseases /illnesses and doctors OVERLOOK way too many patient symptoms. .Hope you are feeling better and check out Psoriatic Arthritis more..xx

Hi. Yes that's what I think I may have based on what I have read but lupus hasn't been ruled out yet. So I'm just desperate for answers and some support. Thank you

High ferritin can be a sign of hemochromatosis


Though this is uncommon. Have you had your b12 tested? A vitamin b12 deficiency can cause a lot of these symptoms too:


Its impossible to say if you could have Lupus at the moment because your symptoms are vague and could be caused by quite a few things. The best thing to do would be to see a rheumatologist, they would be able to diagnose Lupus and do the appropriate testing

silverbeatl in reply to Ctb567

If you have high iron is it bad to take folic acid? Does folic acid increase your iron levels? Or does it have nothing to do with it? The first rheumatologist I saw prescribed me folic acid because she had also prescribed me methotrexate. I stopped taking methotrexate because I was having too many side effects. And haven't taken the folic acid since I stopped the methotrexate. I will talk to new dr to see if they checked my b12 level like you suggested.

Hi Andeangelo

Sorry to hear you are down t the moment. Been there ... One thing someone once said to me is, you have choices. Sounds glib I know but it has helped me hang on now and then.

I was given the advice from Lupus uk to look on the web site for their leafets and read the pamphlet which I saw about the brain box! It was good. I recommend it.

When you reach th bottom of a slump, the only way is up. Think about one joyin your life, a daffodil opening in the garden, a child you know, a happy memory and decide if that one thing can lift you just a little. If you get a lift be thankful for it, perhaps add to it each day.

Don't forget one of the pesky symptoms for us IS looking well when we are not!

See if someone can make a prioritised list with you listing all your concerns and take it with you next time you visit a GP.

You are a prescious light in the world. I can see you.

I hope anything I have written can help. There are so many good people on here who hear you and support you.

Take good care of yourself, choose to come back here as often as you want, we get you, we support you

God bless xx

Thank you for your kind supportive words. It helps to have someone to talk to who isn't judging me. I'm trying a new rheumatologist. So we'll see how that goes. Problem I'm finding is that the pain pills that they prescribe don't work. I've tried Tramadol and Meloxicam and they don't do anything to reduce my joint pain. Ibuprofen doesn't work either. I need to find something that works because it really hurts to move. Feel like there aren't any solutions out there for me or that drs don't care enough to help me.

What is this brain box that you are talking about? Is it a tool I can use to help exercise my brain?

Footygirl in reply to Footygirl

Hello again adeangelo. I had not realised that you were in the states. That alters things a bit. I'll try to let you know what all the letters etc mean.

Firstly NHS stands for National Health Service, which is our free health service here in UK.

The brain box leaflet I mentioned was my febble referance to one of the free leaflets Lupus Uk publish free to help us with all the poblems we face with Lupus. It is leaflet number 12 and is called Lupus and the brain. You can download it from the main web site.

If you join us you will be able to have access to all sorts of advice etc. the quarterly magazine can be downloaded too. And it is well worth it.

The ANA blood test looks at the specific part of the blood which shows positive for Lupus. Antinuclear antibody. It is for autoimmune conditions and mostly diagnoses Lupus. This is produced by immune system when body attacks itself.

I think there is an american version of the Lupus organisation. Have a look online.

You will have to have insurance for treatment won't you? I don't know much about that but I'm sure you do.

That is it for now, Angel.

As others have said, you are most welcome here and you must know that we all have these things to deal with. Any question there will be someone who can advise and commiserate with you.

Take care. I hope you are a little comforted by knowing we are here with you. X

Thank you. I read the leaflet. It had some really good info. I don't know if they did an ANA test but will check with them on that. Thanks again for your support.

Hi You definitely came to the right place. This site has been my last ditch straw. I thought I was going mad up till November before last. Neurologists, cardiologists in fact all the wrong gists were saying I was depressed and needed psychiatric help BECAUSE I wasnt one of their cases. I have fought long and hard to get a diagnosis and finally after 35 years it came back with SLE/APs. Since then still have all the symptoms, pain, loss of memory, headaches etc. (too numerous to mention) but now atleast I have the diagnosis and know I wasnt a hypocondriac.

Get a second opinion, it all possibly sounds like lupus. Im sick of being told it is difficult to diagnose. If they take the right blood tests then it is easy. If your doc wont send you to a rhematologist pay a fee of between £80/120 and see one privately. He will do tests and put you on the NHS after first consultation.

Best of luck - dont wish Lupus on you but atleast you will know one way or the other.

Regards Diane

Thank you for that info. What is NHS? I live in the US. I've seen a rheumatologist but the office wasn't well run and I didn't think I was getting good care there. so I went to see another rheumatologist for a second opinion. Only had one visit and they ran some blood tests. Haven't heard back as to results yet.

Hi, Sorry didnt realise you were from the States. We have a National Health Service over here that I dont think you have.

Hopefully your rheumy will have taken the bloods ana etc. and be able to diagnose you.

Will keep my fingers crossed.

Let us all know how you get on.

Regards Diane

Ok. So I was negative on ANA but positive on DSDNA test. Rheumy still is not certain I have lupus because she says I don't meet all the criteria. So I'm confused. I thought the DSDNA test was fairly specific to lupus. If I tested positive for DSDNA, how could my ANA test not also be positive?

She said she thought I had some connective tissue disease because I have psoriatic symptoms on my scalp and nails but recommended that I get a biopsy by a dermatologist to try to get some more evidence to support diagnoses. Waiting to hear back results of that biopsy. I had the biopsy today taken from my scalp.

I don't know what's going on other than that I'm really tired and body feels sore a lot of the time which makes it hard to get motivated to exercise. My feet hurt to walk because they are sore on balls of my feet. Rheumy has prescribed me Plaquenil and I'm a bit nervous about the possibility of going blind on it. I know the chances of that are small but it still scares me. I just wish I knew exactly what I had so I could start to make some sense out of what is wrong with me and be able to explain to others what I have.

Any advice or insight is welcome.

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