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Please help! Opinions needed!!

504 Views 13 Replies 5 Participants Last post by  Viridian
Hello everyone!

I'm a 27 yr old, mother of four, who really needs some advice right now. I'm not asking for anyone to say 'Oh, you definately have lupus', lol! Just for some opinions on whether it's likely, and what to do about it.
Sorry about the long post that's about to follow, but I'd like to put down as much info as I can. Thanks in advance for taking the time to read/reply to this.

Wow, this is hard knowing where to start. I dont want to seem like a hypochondriac (and really, that's how I feel), but I want to include everything that may be relevent.
I've always been a 'lazy' person, so to speak. That is, I always want to do things, but hardly ever get around to doing them. However, over the last 6/7 yrs this has been turning from 'can't really be bothered' to just plain 'I cant'. Some days I wake up thinking I'm ready for anything and then 'Bam!', the tiredness hits me. Other days (rarely now) I will have so much energy that I can do anything (and often do as my mood tends to be quite ecstatic on those days!). However, the majority of days tend to be 'I should do soandso but I'm too tired', and on those days I have to really push/motivate myself into doing whatever has to be done.

About 5/6 yrs ago, I was diagnosed with petit mal epilepsy. I was stopping mid-sentence, having small lost patches in time and huge panic attacks in public (to the point of which I had to leave the situation, even if that meant when the person was still talking to me!). The latter only happens every now and then when I'm in a situation that I dont feel comfortable with but feel like I'm trapped (ie. a new person talking to me, and I'm the only focus, although I can talk to other 'new' faces and be perfectly fine!). Anyway, I had an eeg and it didn't show up much, but I was put on meds. They did seem to help, and even though I still had the panic attacks, everything else seemed ok, and like I said, the panic attacks have now become infrequent.

About 2 and a half yrs ago I became pregnant with my third child, and I went away and forgot to take my meds with me. When I got back I asked my gp whether it was ok to start taking the same dose again or to go up gradually and he said if I hadn't had any episodes, to try staying off the meds. Since then, nothing major has happened, so I've stayed off the meds.

About 5 1/2 yrs ago, I came out in a rash all over my body (but sparing my head and face). It was very itchy, and looked 'pin-prick' or hives. Went to the doc and he gave me cream for scabies. He still referred me to a dermatologist though as he said he didn't really think it was scabies but they had to check it. Anyway, by the time the app had come for the dermy, my gp had given me another dose for scabies, and some steroid cream. Went to dermy. He was really not nice. Told me to undress, took one look and said it was scabies! I said I'd done that treatment twice and he said I still had to do it again. Needless to say I didn't go back, and even after the third treatment the rash didn't go. Eventually, after several months it went by itself.

About four years ago I had chest xrays because I had had a persistant cough for quite a few months, and had horrific pain in my chest and shoulder. By the time that app came through, the cough had gone and the xray was fine. Gp said I prob had mild pleurisy from the coughing.

For the last few yrs I've had chest pains every now and then (just like now as I type this but it's quite mild at the mo) where I struggle to breath, and have to breath shallowly and wait for the pains to go. After one major time when the pains were so strong they were going down my arm, I decided to tell the gp. He checked my cholesterol, which was slightly high at 5.9 (I'm 27, semi-fit, but generally eat a varied/good diet-there's nothing I can cut out) so he put me on tablets to bring that down.

A few yrs ago I started to get rashes again. Mostly on my front and back. Sometimes they look like hive spots bunched together, other times they look like they are healing from the middle and spreading outwards (the most recent is in the middle of my chest, and started from an insect bite. The middle now looks clear with a red rash around it). However, on the same day, I also had an insect bite on my left arm, and although that was a little bit itchy, it never became a rash. I've had these rashes checked on about 3 or 4 different occasions for fungel infection, etc. but nothing has ever shown up.
About two and a half yrs ago, I also noticed a bald patch on the back-left of my scalp. Went to gp. He gave me cream. Grew back after some months. Then, again, start of this year, I had a 20p sized bald patch on the back right of my scalp. Went to gp again, he gave me some more cream. Instead of growing back though it is now the size of 2 50p's side by side, with another smaller bald patch underneath. Also, it seems whenever I feel there is regrowth there, it soon becomes smooth again as if it keeps falling out.

Over the last couple of yrs I've been getting cystitis every three to four months - again, ranging in severity- and each time there is nothing found/grown in the urine sample. I also get every few weeks what seems like the start of cystitis but doesn't develop into it.

Anyway, my gp a few months ago, decided to send bloods off for lupus (because of my hair) but they came back and he said they were fine. So, once again I decided to live with it (at this point I was having aches in my knees, and sometimes my ankles too. Gradually getting worse over the last couple of years) but then, about a month ago, I lost vision in the right hand side of my sight! It wasn't totally black, it was as if someone has turned the resolution right down on that side, and it was flickering/pulsing!!
Needless to say, I went to casualty. By the time I could get there and they saw me (about three hrs after it had happened) it was gone. They did a couple of tests for a stroke (looking at pupil reaction, gripping with hand, etc.) and found nothing so they sent me home telling me to see my gp on mon (this was sat) and to pursue lupus as it seemed viable. Sun night a little patch came back (again right-hand side of my vision, NOT my eye-ie. if I closed either eye the 'disturbance' was still there), but went again.

Changed gp on the mon (Really nice doc, and I felt really guilty leaving him but my eyesight was something really serious this time and I needed someone who'd take it seriously as he hasn't done any allergy checks on my rashes and keeps saying that the tiredness, aches and pains are down to me having four kids and nothing more- trust me, they aren't that much work. Lol!) and she got me an app for the stroke clinic for the tues.
Went there but he couldn't find anything. He also told me I shouldn't be on the meds for chlolesterol as it wasn't that high and could be managed by diet an exercise ( I haven't taken them since as my new doc hasn't got my notes yet so doesn't want to do a repeat pres until she knows all the details).
He did new bloods including glucose, esr, ana, and quite a few others and when they came back app everything was ok, just a little off, like ana (I think it was that one!) was 13 and they expect it to be 12, but nothing abnormal so he discharged me.

My new gp said even though bloods seem ok, she still wants me to have a ct (whatever the stroke doc says) because it was very unusual to have this happen to someone of my profile (age, etc.). Since it happened my eyesight has been a bit 'dirty' at times, but again this comes and goes, and is getting better. Then I started to get a headache (this was a week after the eye thing but I didn't mention it to my doc cos I thought it would go). Very strange, it's at the back left-hand side of my head and I can virtually pinpoint it's centre! It ranges from mild to very severe, and for the last few days has been worse first thing in the morning or last thing at night when I'm lying down trying to sleep! Told her when I'd had it for 2 weeks, and she said there's nothing she can do but ct should only take another couple of weeks, and she'd refer me to a rheumy just in case after the results of the ct scan come back. She asked for bloods to be repeated, which I did this fri gone.

Had a letter about ct scan and they are backed up for AT LEAST 14 weeks! I really cant wait 3 and a 1/2 months to find out whether my head is ok! So, I'm going to ask (when I get my blood results back end of next week) if there is anything I can do or whether I just have to put up with it.

Oh, and I had my youngest son 2wks 6days early, but because he wasn't 3 wks, they dont class him as prem. A couple of days before I had him, I had a pain in the lower left abdomen, and the day I had him I had a bleed but they did an ultrasound to see if he was ok and couldn't find anything wrong. I had him a few hours later that night! I still have that pain sometimes but very infrequently now (he's a yr old now).

And I have severe problems with my teeth (which my eldest son has too, despite only drinking water, and not eating sweets/sugar/etc. Honestly, people think I'm weird not giving my kids stuff like that but I didn't want their teeth to be like mine! Oh well!)

I'm not sure whether I have the malar rash because even though it is in the same shape, it's never scaly, raised, etc. and because my dad is prone to red cheeks, I figure I am too!
Oh, and I have a severe allergy to whatever is in hair dye! Wow! My scalp becomes inflamed and blistered, and weeps, and, well, trust me, it's not nice!

Last thing...I have some severe 'spooking' episodes on quite a frequent basis for quite a few years now, but they seem to be getting worse. They normally happen at night but recently have increased in frequency during the day too. Certain things can set me off (I dont watch any horror, not even doctor who now!), but more often I could be sat by myself quite happily, and suddenly I get this fear as if something is going to happen to me / someone's going to do something to me. It's totally irrational, and quite often leaves me paralyzed with fear if my other half isn't in the same room to 'protect' me. Sometimes (again quite often) it can happen when I'm trying to sleep at night and I literally hide under the covers.
I'm sure there are other things that I've forgotten for now but oh well!

Well, if you're still with me and haven't fallen asleep through all of that (and I really apologise with the timeline being confused/jumpy!), has anyone got any opinions for me?! Is it worth pursuing a lupus diagnosis, even if this third set of bloods come back ok? Or could it be several unrelated things and I'm just unlucky enough to get them all?
I worry that I'm making more of this than I should because I dont have VERY severe aches in my joints when I get the aches, My symptoms with virtually everything I've had have come and gone and ranged from mild to severe, and I dont seem to react to sunlight (although there has been little of that lately to test it on. LOL!), and two lots of bloods have already come back ok.

Anyway, I'll leave it at that essay, and if anyone has ANY comments or questions, please go ahead and reply. I'm open to anything! At this stage I just want to find out what's going on, and any help is appreciated so much.
: )
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Welcome to the boards...I am sorry you have had so muych going on, I hope they sort you out soon.

I am not al all qualified to even guess what is going with you, but I would like to ask if they have considered depression?

It seems like a few of your sysmptoms may be caused by mild-depression.

If so, perhaps an anti-depressant would sort out some of them. These meds are also used to help reduce pain by improving sleep patterns.

Some of them though do sound like you might have lupus or some other auto-immune condition.

I wish I could offer more, but I wish you well.

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Thanks for that. No body has mentioned depression but then again, my old doc has always been quick to give out antibiotics, painkillers, etc. etc. in response to most things! I really dont think he believed just how tired and achy I am! I have to say though that I've not really been the depressed type. Apart from every now and then when all the things going on with my body get me down!
Anyway, new doc and I guess I'll have to see how it is. The worst part now is the ct scan being at least 3 and a half months. I wish there was another way I could do it quicker!
Also, as a sidenote, I rang my Dad to ask him about a condition he has, and any family history. He said that he has had virtually everything going inc. rheumatic fever, and my mum had arthritis and something else that he couldn't remember what it was (he's going to ring once he can remember, lol!).
My brother also has vitiligo, and chest pains (although severe, he refuses to get them checked out.). And as a teen I've had migraines, severe period pains, and all sorts, but nothing has ever come of any of it.
That's my major problem really, every test I have when I do have them seem to come back ok. I know I'm not making it all up, and I live day to day in pain/discomfort/etc. but it's hard when you know other people dont believe you and you feel such a fraud.
Oh well. Thank you again. I just feel so lost at the moment.
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All I can add, is to keep pushing for a DX of some kind. I have SLE and I am serum negative (meaning all my blood test come back fairly normal). All it takes is a good doctor who is familiar with Auto-immune diseases.

Good Luck - Stephanie
Welcome to the forum Viridian! :)

I am sorry not to have replied sooner to your post because I've been thinking a lot about it and in particular what practical advice to give.

You seem to be well on the way already to deciding to make the effort to get some answers, taking charge of your health. It can be difficult because it means acknowledging the scary thought that something probably really is wrong and the time has come to put aside all those little hopeful and reassuring thoughts such as it's probably nothing, " my dad has red skin too".
I hope the new GP will be truly proactive and do everything possible to help you get thoroughly checked out as soon as possible.
It might not be lupus per se or there might be several things going on associated with lupus directly or indirectly

First, make sure the GP has done all the tests she is able to; see the list of tests on the information part of the site. She might be able to order a test for syphilis - don't panic - because a false positive VDRL test can indicate a tendency to a blood clotting disorder. She might also be able to get a 'lupus anticoagulant" test done. One of the most common is the aPPT test. Abnormal results there can also indicate this clotting disorder. The other test is an Elisa for anticardiolipin antibodies.

You need to find out what tests are being done and get a note of the results. It could be useful to know what the test was that gave the results you mention. ANA tests do not give results like that. The only auto-antibody test I can think of with results like that is one of the anti ds DNA test methods where up to 10 is regarded as normal. Anyway there's not much point speculating about it, except that this test can be very significant for a lupus diagnosis, cinching it if there are other signs and symptoms.

I wonder if it is possible to have a multi pronged attack by getting appointments with various specialists such as a dermatologist,an ophthalmologist a neurologist maybe a cardiologist. A high street optometrist might be able to detect some problem with the eyes. Just maybe there is a 24/7 emergency ophthalmology service in your area that you could access.

I don't have much general medical knowledge so I might be wrong but I doubt if the A&E tests as you describe are enough to rule out a stroke causing the loss of vision. They wouldn't rule out other possible causes.
You did well to enquire about the health of close blood relatives. Almost anything can be relevant as it might not ever have been correctly diagnosed. Thyroid disease, heart attacks, strokes, thrombosis, recurrent miscarriages.

The lupus malar rash can easily resemble a healthy blush, or rosacea. A biopsy from unaffected skin can even show lupus - a facial biopsy is obviously a bigger deal but is more likely to be positive and usually heals so well that people shouldn't be put off having it done, according to what I have read.
Lupus is often very complicated and hard to diagnose as you probably realize. One symptom can have a few possible causes and finding the cause can determine treatment. It is really hard on the NHS seeing one specialist after another and waiting ages for tests. Lupus specialists are few and far between and I can't recall hearing of any in Wales. I believe some people go up to Bristol.
That is long time to wait for an MRI - ask if they would let you know about any cancellations. My hubby had to wait 5 weeks for an MRI after his stroke to get precise details of how the stroke had affected him but he did have a CT scan done at once. He was absolutely fine on the sort of tests you describe: 'all' that was the matter with him was he couldn't read or spell. Same with his first stroke when he went blind for a few seconds then lost peripheral vision in one eye

Maybe your GP would consider a trial of Prednisone to see if that relieves any of your symptoms, including the headache - apparently lupus headache can respond dramatically.

I doubt if I have been much help in reality, maybe even the opposite by suggesting impossible courses of action, but I would heartily encourage you to persist. Lupus presents in so many different ways that it certainly could be lupus.
Antidepressants can also help headaches as well as anxiety states which you are clearly prone to. I must say my own moods are very similar to yours. I just can't be bothered to do anything even my hobbies. I consider myself mildly depressed most of the time except when I am hyperactive. I suspect I'm what's called cyclothymic.
So don't dismiss the depression notion out of hand. It takes many forms and it would not be surprising if your health issues alone were causing it. How do you sleep?

Please keep in touch and let us know how you get on - we'll do all we can to help you.

Bye for now
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Many thanks to both of you. I would have replied earlier but I decided to wait until today as I had an opticians and gp app, and I wanted to see what came of those.
I think you may be right Clare. It's almost like a battle in my head, one side saying I'm putting it on for the attention, and the other side saying what I experience is real! I've always been like that (not just with illnesses). It's funny you used the line about my dad having red cheeks too, as they were hot and felt swollen again today so I told the gp and she said basically it all points to lupus. Wow, let me tell you about my new doc though....
I had a new gp who was really nice but found out this week, she had left the practice (to have a baby-awww!). Got an app for today and I was so worried having another new one (she might dismiss everything, etc. and put me back to square one) but it turned out I couldn't wish for a better doc! I told her again about various things, and she immediately asked me whether I get mouth sores, how my hands were in the cold, do I get dry eyes, etc. etc. All the things I hadn't been asked before. She really seemed to know what she was talking about.
She was also very funny, and down to earth, but informative as well. Anyway, to cut a long story short, she said she's referring me to a rheumy straight away! They are ringing me on mon/tues to let me know how much it would cost for a once off to the rheumy so I can choose between private or nhs, and then if I choose private I can still go back to nhs or carry on with private (although I know I couldn't afford that but I may go for a once off if is it's going to be quicker).
She's also ordered more bloods inc. ANA, rh. factor, lupus anticoagulant, etc. and I'll have them taken on tues.
Btw, 3rd bloods came back fine but didn't inc. ANA, etc. They were mainly function tests. (and in the 2nd lot it wasn't ANA that was 13, it was ESR. Sorry! Too many acronyms! :hehe: It's back to 12 now though?)
The ops went ok too. An hour doing various tests on my eyes, and having horrible drops put in them, etc. etc. and she said that apart from my right eye needing a bit of help, they were fine and weren't the cause of my partial blindness. (I took her letter to the doc, which she appreciated.).
I'll keep in mind all you have said about tests, etc. and will prob ask my rheumy about them. And I'll ask for the values of the results when they come back. It's all just a bit scary because I felt, before, that if i asked specifically what my results were they would ask me why I wanted them!
I dont really want to ask about prenidsone tbh because I took it for a while when I had my hair dye allergy and my face swelled right up (moon face?)!
Will def ask the rheumy about antidepressants though. Just need to think how to word it. "I've been told on the internet" - Rheumy thinks "ah! Hypochondriac". :rotfl:
Anyway, thanks so much again for all your help. Nice to know there are people out there, and that maybe I'm not going as mad as I think I am!

edit- you asked how do I sleep? Well, it's always taken me forever (ok, an average of an hour to an hour and a half!) to get to sleep (mind racing, etc.) but when I am asleep virtually nothing can wake me! I used to have night after night where it would take me more than 3 to 4 hrs to get to sleep. I have serious problems getting up sometimes (although this does get better/worse depending), and forget about alarm clocks...unless you count my partner!
Funnily enough though, on 'bad' days I will fall asleep on the couch within a matter of minutes.
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Hello Viridian

Your new GP sounds fantastic - a helpful one who takes you seriously is so important in every respect. That validation is so important and makes the rest very mcuh easier to bear. Reasonably good news about the optometrist too. I hope you don't have to wait too long to see a rheumy. It will be very interesting to see what the blood tests throw up - why no ANA? It's the obvious one to start with.
You really are taking control of the situation, so well done.
I know what you mean about how difficult it is to decide you have to do something about whatever problem it is, not just illness. I make the decision to seek medical help mainly on the basis of how long the problem lasts or how often it recurrs but my main impetus is simply that I would feel such a fool if failure to take action resulted in some very serious condition that could have been remedied if I had sought help sooner. I always have enough to reproach myself (pointlessly) for, on the lines of what I should have done and failed to do in every aspect of my life.

You don't need to mention that you got information on-line. All you need to say is " It crossed my mind that I might be depressed, and then there are all these signs of anxiety ... " There is no reason to feel guilty about it, but it is prudent not to mention online activities because it introduces a new dynamic to the dialogue and some doctors even good ones see it as a challenge. If what you read online is wrong they then have to contradict you. There are so many other sources of information.
As far as the lupus possibility goes if asked you can truthfully say that your GP thinks you might have lupus or something similar.
Most people are very aware how common depression is but not so aware of all the forms it can take and it is not so easy to recognise it in oneself. You might like to suggest it to your GP as they are more likely to deal with it than a rheumatologist.

If you have looked at the St Thomas so called ""Alternative" Criteria list you'll see that a tendency panic, phobias and anxiety is on it.

The SED rate varies from time to time because our immune systems are usually active as it goes about its business defending the body. It is always raised even when people are quite ill - just another of those mysteries.

Viridian is an amazing colour :) I think I would choose Cerulean if my screen name had to come from artists' colours. " Madder" might be misleadingly obscure and Rose Madder Genuine a bit precious. (If you get what I am talking about !) :hehe:

Bye for now
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I'm so glad your visit was such a good one!

Re. the antidepressants - I'm not sure whether you should ask directly for them, it may not go is your favour! Perhaps you should just tell the GP symptoms that make you think youre depressed (of course tell her you think you may be sufferring from depression) and see what the outcome is! Make a new appointment just for this reason asap - dont wait until you have other things to discuss or results to receive!

Perhaps someone else will come along to help you with a better approach re. getting antidepressants!

Take care!

Me again
I see they are doing ANA tomorrow, having the two threads going is getting confusing.
Clare.T;517850 said:
Viridian is an amazing colour :) I think I would choose Cerulean if my screen name had to come from artists' colours. " Madder" might be misleadingly obscure and Rose Madder Genuine a bit precious. (If you get what I am talking about !) :hehe:

Thank you. I've always loved the colour, and it's the first time someone has commented on the name. "Madder" would be very funny if people didn't get it. :rotfl:
Anyway, decided to go private for first rheumy consultation, and will update after that app. (whenever that may be!).
Greenhaggis - i know what you mean about making an app with the gp now, but I'm going to wait for my blood tests to come back first. It's 40 mins to my docs, and with four kids only my hubby can take me which means losing wages. I figure I've got this far, I can wait a little longer. :rolleyes:
Thanks again.
Good luck with your private appointment!

Golly 45 minute journey to your GP is a long way away! Is that the closest surgery?

Hugs Lesley

PS - I have 4 kids too eldest 9
Lol! My eldest is 8 almost nine! It can be hard work but it is rewarding. Nice to see small families haven''t completely taken over ;)
It's the second nearest surgery that I could get in to. The first had a nice doc who I've had for years, but just kept giving me antibiotics and cream, etc. He did the one blood test for lupus and then said it definately wasn't because the test was neg. That was last yr, and when my eyesight went a few weeks ago, I decided it was time for a change. :)
Welcome "V" and sorry I am late to post here.

I am so glad your pcp is working with you. Awesome doctor!

I am brand new to Lupus so I do not have any good advice to throw your way, however, I have suffered with Anxiety and Panic disorder issues for some time now and in my humble opinion I think you would fair well on a anti depressant and also something for anxiety.

Give it a shot and talk more with your doctor about this. You have nothing to loose. Push forward until you get a clear dx. We know our bodies and we know when things are not right.

Doctors can be like deal with a bunch until you find the one that you like best.:lol:

How is that for a stupid analogy...:wink2:

Hope to get to know you better.
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Lol! Will do. Thanks. :)
Love the analogy though! LOL!
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