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Hello

I found this site after having a bit of a worrying hospital visit earlier on today. I'll start from the beginning so apologies in advance if this gets a bit confusing! I'm mildly dyslexic too, so sorry for the bad spelling..:)

I was diagnosed with ITP (platelets between 20-80) and eczema when I was 11 (I'm 22 now). When I was 16 I had glandular fever and subsequently developed all the symptoms of chronic fatigue syndrome (tiredness, acheyness). I was diagnosed with this aged 18, and then a year later also with fybromialgia as the pain in my muscles was so bad I could hardly walk. In the past couple of years I've also been diagnosed with chronic cystitis, sinisitus and kidney infection, ulcers in my mouth/nost and Raynauds syndrome. My doctor believes I have PCOS and from the associated symptoms I'm inclined to agree! All these conditions are still there and causing problems most days - I pop painkillers like smarties. Additionally I'm currently being seen by neurology at present for suspected narcolepsy.

So, back to today. About four weeks ago, I developed such gritiness in my eye that I was taken to casualty, and now having been on different steroids and antibiotics, I've been told that I have such dry eyes that I've developed corneal ulceration (its painful!). Its affected my vision so it was obvious that something was wrong... this I'm told could be linked to having dryness in my mouth that's there all the time, I was told it might be something called Srogens (?!) Anyhow, the opthamologist I saw was interested that I was tested for lupus when diagnosed with fybromyalgia, and has asked me to go back to a rheumatologist to check in and inform them about the problems with my eyes.

This is all a bit overwhelming, I've got to admit I feel ridiculous going back to my GP with something else to add to my file (which weighs the same as a small rainforest I think!) and a bit concerned that lupus has been mentioned again - I don't know a great deal about it. To be honest, I feel a bit like something is playing a nasty pick and mix game with my health, and its a wait and see game to see which system in my body fails next (they don't usually take it in turn tho!) Could someone belay my worries on this please, whatever is going on is causing me a lot of worry (did I mention its naturally quite stressful and making me depressed?!) - I'd really just like a body that works.. As I was diagnosed such a long time ago I don't have a rheumatologist anymore, nor a haematologist, a group of GPs just monitor me and I struggle on through uni (I've got my finals in a month yippeee! That'll be the end of four years of missing so many classes from being ill/in hospital that I may as well have not paid for the tuition!!)

As there are quite a few things going on, should I make a list of everything that's causing problems, and has done recently and take it with me? Something in the mix is affecting my memory and concentration, and, I get the feeling I'll forget something when going in this time.. :hehe:

Any advice/any ideas/comments on if this sounds like lupus would be greatly appreciated. I'm at the point where after ten years I'd just like to know what's going on..I understand that lupus is the 'greatest mimic' in the world of medicine and is difficult to diagnose, so if there's some way I can ease the process of finding out if it is or isn't that, I'll do it!

With best wishes, love and health to all
Kate
 

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Hi Kate and welcome!

I am sorry that you are having such a rough time of things, but you have found a great site with caring helpful people!

I am not a Dr, but it does sound more autoimmune than much else to me. If you like your GP's I would probably ask them to perform a Lupus panel, just to see...if things show up there then they can refer you to a rhumatologist.

Good luck and let us know how you get on.

Stephanie
 

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Hi Kate. Sorry things are so hectic for you right now, must feel like a systems overload! Musta been tuogh being unwell and still studying... congrats and good luck on making it to your finals! Can't offer much advice but am thinking of you and hope you get some answers soon!

X T X:)

ps don't think many of us would get through the foggy days without a list of some nature, it's a very good idea
 

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Hi Kate,

I'm afraid I'm not at all knowledgeable on most of the other things you have been diagnosed with, but I would agree that it does sound as if it could be something auto-immune. If you take a look at the criteria and alternative criteria posted at the top of this section, I think you'll find that you have many things which seem familiar to you.

I would definitely get a referral to a rheumatologist, even if bloods are coming back negative for lupus. The bloods can sometimes be slower than the other symptoms and in some rare cases people don't have the postive ANA antibodies that are used as a first screening test for lupus.

Having a rheumatologist follow you in general for all these symptoms and the fibro would be a good idea.

At least if you do find a correct diagnosis for all your troubles, you should hopefully be able to get treatment that is better adapted.

I would certainly make a list of your symptoms. You may not see a link but a good rheumy should. Also, if you have any rashes or swelling which come up from time to time get someone to take a picture of them. They have a nasty habit of disappearing on the morning of your appointment and as they say pictures speak louder than words at times.

By the way, memory and concentration problems or "brain fog" are very common with lupus - and very frustrating - so you can add that to your list.

I hope that helps a little,

Katharine
 

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Hello

Thanks everyone for your kind messages they've really helped :) The list of criteria are interesting to read too, I can say no to several, but yes to an equal number.

I saw a rheumatologist for the first time back when I was diagnosed with fybromialgia..it was quite a bad case he said, I was unable to walk at all for about six months. They did the blood tests for lupus and also a skin biopsy for what appeared to be a discoid rash. Sorry if this doesn't sound quite right or I use the wrong names for things, this was a while ago and I was pretty much zombified for the entire time!.

Anyway, the skin biopsy came back as being simply discoid eczema, and the blood results negative for ANA. Katharine thats interesting that you say that ANA is not always there as the rheumatologist and dermatologist both told me it was impossible to diagnose lupus without a positive ANA..I'm not on a rheumatology list anymore as its been a couple of years since I was diagnosed, and just manage the pain with heaps of ibuprofen and willpower - occasionally in short supply! I'll speak to my GP and ask to see a rheumatologist again, and take a list of everything along, its a good first step..or twentieth...suspected lupus take two!

Anyway its nice to know that I'm not the only one who is forgetful or has brain fog, that part of things does sometimes make me think I'm going a little nuts. I once baked a cake, then found a pack of chocolate chips where my car keys are kept...guess what was inside the cake :rotfl:

Take care
Kate
 

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Ha ha Kate! I guess you were forced to eat the cake before you could go anywhere! I was so eager for breakfast one morning i threw the bacon in the pan... it was still in the plastic packaging! Luckily no-one else was in the kitchen at the time.:)
 

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Dear Kate, I expect you have realised from your reading that many Lupus patients also have Fibro. I am in this category. For a very long time my ANA was negative but I was still diagnosed and helped. Negative ANA does not mean you are less sick than other people, I was in a right state. Eventually my bloods turned positive. My Daughter also has Lupus and has had to take a year out from College so I understand how hard it has been for you.

Carry a little notebook everywhere for a few days while you write a symptom list. Also be prepared for it to be an upsetting experience, seeing a record of your struggles and losses is never easy. We will be here to help.
x Lola
 
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