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Hello all

My name is Joanne and im 22 years old, I have been feeling poorly on and off for about a year and doctors have not got to the bottom of why. My father has autoimmune problems and my sister has rhematoid arthritis and an under active thyroid. I was diagnosed with an underactive thyroid about 18 months ago which is stabilised yet i still feel poorly with new symptoms. I feel sick, have joint pains, tiredness, dry eyes, blurry eyes, muscle aches and i generally look poo. Sometimes its really hard to describe and i just say i feel rubbish. Its weird though as have days where im ok and then days where it hits me. I have had every test under the sun, CRP, ESR, ANA, FBC, Bone profile, Aneamia EVERYTHING and everything is normal!!!!!!!!! Dont get me wrong i dont want it to show anything but its so frustrating feeling ill and not knowing why and worrying that people dont believe you. My GP is great and has suspected autoimmune problems for sometime but my results just dont match up.

My most recent test was the ANA which was 0.3, which apparently is normal/? Is it?? All the figures i have seen are done in a ratio so 0.3 doesnt really mean much.

What is wrong with me?? Am i mad??

Jo xx
 

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Jo, You are not mad. It is not uncommon for blood tests not to show much especially early on. Mine were actually normal for over 20 years but that is extreme!
I am glad your GP is helpful. Sometimes a short course of steroids will deal with the inflammation and leave you feeling dramatically better. I was lucky that a GP tested me this way. It is a helpful pointer.

I was really ill prior to my blood tests showing anything and I ended up (after rubbish local Consultants) seeing Dr. D'Cruz in London. I had to go privately first but then managed to get an NHS referral when he took me seriously. He was treating me before the bloods ever turned positive. It is possible for you to be treated for "lupus like illness" even without the right bloods. You need symptom relief. People on websites like this helped me to go to the right place otherwise I could have wasted my whole life. It is important to remember that not all Docs. are experienced in Lupus.

Good Luck,
x Lola
 

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Thank you for responding Lola, I have been reading this boards for sometime without posting and it has been really helpful. Its amazing how many people are in the same boat isnt it.

Its so frustrating, I am such an active person and i just want to be able to keep up with my friends without feeling so rubbish. It makes me feel mad when i long for something to show in a blood test just so i have a reason for feeling ill and then can get on the path to feeling better. Im terrifieid im going to be like this for years.

When i look back over my childhood i have had so many infections and silly things. Ive had my appendix out, my tonsils out after a serious throat infection left me in hospital, numerous mouth ulcers, blood in my urine which was investigated and nothing came of it. i get chillblains so bad in winter that my toes barley fit in to my shoes. I had a rash last year on my last day of holiday but it went the next day. Im cold all the time and achely. The feeling sick and joint pains are fairly recent. Does this even sound like lupus or any other autoimmune disease? I guess my family history is what has led me here.

thanks for all your help, its nice to know your not alone xxx
 

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Forgot to say i was diagnosed with dry eye 3 months ago after i developed blurry vision at work, sometimes when i get in from work i have to just close my eyes as they wont stay open.

sorry to hear you waited 20 years to be diagnosed, that is awful. I have only been this bad for 6 months and im already going insane!

xx
 

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Jo, a good Rheumatologist would certainly feel that the dry eyes and mouth ulcers are of interest. You may have already read that the Shirmers (Dry Eye)
test is helpful in Lupus diagnosis. Mouth ulcers tend to mean the disease is active. I used to have huge ones but on treatment they are very much reduced.

What does your GP have in mind for you?

I am sure others will be along to tell you their experiences.
Come here as much as you like, we all remember how it was for us pre diagnosis. It is no fun.
x Lola
 

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He is saying its now a waiting game and that i will either get better or i wont so thats where i am at the moment.. very frustrating!

Do you know what the 0.3 ANA means?

thanks for your help x
 

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The other ANA test metric is from the ANA direct test... but it also doesn't appear to be on the same scale as yours. Although the results are not expressed as a ratio so perhaps this is what you had run. Here is some information on that test:

https://www.labcorp.com/datasets/labcorp/html/chapter/mono/ai003200.htm

If you are able, I would try to get a referral to a rheumatologist even if, and possibly especially if all your labs keep coming back as normal. Six months is far too long to be suffering from those symptoms - you deserve a thorough investigation at this point by an expert! Look through the Find a Doctor section for recommendations; it's important to see the best person possible especially when bloodtests are presently coming back as normal.
 

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I am not very good at interpreting ANA tests but I stick to what I have said, you need symptom relief and waiting six months is unreasonable. You have already been through a lot. If you need to go Privately a reputable Consultant will not cost the earth or make you have unnecessary tests. This is what some of us had to do to be taken seriously!
X Lola
 

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Thank you Lola and Maia for responding to me.

I kind of now feel as though i should do what the doctor said and just wait and see what happens. Maybe ill get better by myself. I just cant bear the thought of sitting infront of another consultant with them looking pitfully at me saying im sorry but i dont know what it is. Im scared too that ill get to the stage where doctors will stop believing me and disown me so i figure if i wait ill either get better or get worse and if its worse then something might show in the blood tests? I cant believe we can feel so poorly and yet everything show as normal. Ive lost about a stone too in the last month and i eat so much unless im having a terrible day. I love sweets, chocolate and cake and generally anything thats bad for you!! hehe I also am so pale with terrible dark rings under my eyes which i hate and makes everyone say "whats wrong, you look so poorly" even when im having a good day! its annoying!

Ive just met my dad for lunch and he is convinced my problems are connected to autoimmune issues especially as i have recently developed an under active thyroid.


xxx
 

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Dear Jo, Hate to say this but I was extremely ill before my bloods changed. You really need an enlightened Consultant to listen to you and treat you. You could be in for a long and miserable wait otherwise. Believe in Yourself. So many of us have been in your shoes.
x Lola
 

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Hi Jo,

Just wanted to add my "opinion" here :)

You have got excellent advice from the others and I just wanted to say that you must NOT give up trying to find out what is wrong. You just have to keep going back and insisting until you get there. I went through years of what you're going through but I am very sure I could have shortened that process if I had become more pushy and persistent earlier.

In the end I actually made a New Year's resolution and then walked into my GP's office saying that I had decided that this was the year I was getting an answer and that unfortunately for him that meant I was going to be the most annoying patient he had ever had until I did. Thankfully I do have a good GP who is also a very nice man and doesn't mind my un-Belgian like directness.

Four months later I was diagnosed. I think that change in attitude did a lot to get docs to take me seriously and also meant that I believed enough in myself to get there.

I was also (and still am) ANA negative but was eventually diagnosed through clinical signs and a positive skin biopsy.

Try and get that rheumatologist referral (to someone specialised in auto-imune conditions) and keep us posted,

Katharine
 

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Dear Jo,
Just had to say something even though the others have already said it! Please persist in your search for answers. I was one of those that gave up, as my symptoms came and went and nobody believed me. I was not even given appropriate blood tests- although I did not realise it at the time. I suffered on and off for at least 25 years before I received treatment. This has resulted in permanent damage that otherwise I might have avoided. You need a really good Consultant to look at your symptoms and possible signs of disease along with your medical history. Just waiting to get better or worse is no answer.

If you had a suspected broken leg no GP would send you away to wait to see whether it improved or not!!

For a long time I was treated only as a Psychiatric Case so beware of that too.

Please look after yourself.
 

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Thank you all so much for your help and advice, it really means a lot you taking the time to reply to me.

I really take on board what your saying but i have always been one of these people that worries what others think. I cant bear to think that doctors, friends, family will think im a hypochondriact or need pyschiatric help. The frustrating thing is i can see why they would think that, every single blood test has been normal. I guess the only good thing if you can call it a good thing is that the opticion said my eyes were incredibly dry and i look fairly awful so close friends and family are on my side and are also pushing me to get answers. I have serisouly had loads of blood tests and i hate hospitals at the best of times. I dont think i can face anymore and the same result, im also scared of sitting infront of another consultant who thinks im just a silly girl who is stressed. Sometimes i even think i am mad, i cant get my head around how you can feel so ill and so strange yet have normal results, i feel like im always questioning myself.

Most of my symptoms are so vague on their own but when they are together its horrible. I just cant describe it very well, its just like flu. I feel sick a bit to and from what i have read that isnt a lupus/ autoimmune symptom. I guess i think that something more specific will crop up and then i might get taken seriously or it might go all together?

Did you all have vague weird hard to describe feelings at the beginning? Its just mad, I have horrendous ankle pain one day and the next day its not there.

Thanks again for all your help

J xxxxxxxxxxx
 

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Hi Jo

I'm around these boards regularly but I don't post much. I've been helped tremendously by the friends here, so I wanted to repeat to you the suggestions that have helped me.:)
It would be a good idea to write down all the symptoms you have experienced and are experiencing now. Don't get too discouraged by how long the list is getting (mine seemed miles long). You can then give one copy to the doc and keep one for yourself and add to it if needed.
As well as trying to describe to a doc how you feel, you can tell him how your health problems are affecting your life. I told my rheumy that I could barely function-couldn't work, cook, go out with friends etc.
As for my initial blood tests, they were ALL perfectly normal too. Six months later they started to be off, although not much. But my symptoms were very lupus-like, so I was started on Plaquenil, which I have found very helpful, and have been diagnosed with undifferentiated connective tissue disease and fibromyalgia.
Maybe you can ask for some symptom relief for now, while investigations are still going on.
The point of this long post is don't give up. This is YOUR health. Please don't let anyone make you feel like a silly little girl. I'm glad you have supportive friends and family.
Take care
Tammie
 

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Hi Jo,
I am going to weigh in on the side of the others who have posted here. I am, and always have been, ana negative. I have positive: anti ds dna, acl, apls. I have at least 8 of the 11 symptoms. According to the ACR, meeting 4 of the 11 symptoms constitutes a diagnosis with or without lab work.

I showed my first lupus symptom when I was 5. I was not diagnosed until I was 35, primarily because the doctors all weighed on having positive ana. I went thru a LOT of health issues in those 30 years, and should have been dx long before I was. It is in my medical chart that I was tested for ana's repeatedly. The "L" word was used as well, but because they put all their eggs in one basket, I was medically mismanaged. I have lost 60% of my lung function because of the mismanagement of my care. It is NOT worth it!

If I can give you just one bit of advice, it would be to be the doctor's biggest pest until you are correctly diagnosed and treated. If you give up on you, so will they. You will buy into their lack of direction and you could risk losing function of your lungs, heart, joints, or even damage to your brain. Not one of those is worth the loss just to let the doctors think they have done all they can. They haven't.

Keep a journal of all the problems you face on a daily, weekly, and monthly basis. Leave NOTHING out! Then, when you see a pattern emerge, take it to your doctor appt with you and go thru it with the doctor. If that doctor brushes you off, then hit the road. There are other doctors out there.

When I was looking for a new rheumy years back, I took a piece of paper which I divided into two columns. On one side I wrote down what I bring to a doctor/patient relationship. i.e.: I don't abuse appointment time, I keep my appointments, I follow medication directions, I come prepared for my appointments, that sort of thing. On the other column I wrote down what I need from a doctor. i.e.: that I need to be listened to, if I call with a question, I want to be answered, I need him/her to work with the other doctors on my team. I then called the doctor I was considering. I went thru my lists, and when I was done, asked if he could deal with that and work with me. He said yes, and that was over 15 years ago. I surprised him, he had never had anyone be that direct with him. It has worked for us.

Don't give up on your hunt. There is something going on, you just don't have a name for it yet. It is ok to take a break if you need it, but don't give up on yourself.
Sally
 

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Discussion Starter #16
Thank you all for your advice, I really appreciate it.

I have seen my GP and have now been diagnosed with Post viral Chronic Fatigue Syndrome. I had a terrible case of tonsiliitos a while ago and huge mouth ulcers the size of golf balls that put me in hospital, i could well have got it after that. He said all my bloods are normal so it leaves nothing else. I said but i dont have the typical symptoms ie im not necesarily really tired after a busy day or after ive played sport or been out with my friends and he just said it isnt a typical case. So i guess there is nothing more i can do except pray I will feel well soon. Whatever is wrong with me is cruel as i have days where i feel ok and i think im better and then days where my ankle and wrists hurt so much and i feel sick and ache all over.

I cant go back again though, i have to accept what he says. I am going to write everything down though thats a really good idea.

xx
 

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Jo,
I want to say I am sorry that you feel so bad. You are not mad you know your body and how you feel better than anyone else. I want to let you know that all my labs are normally well normal. I had a byspie that was so clear that I had sle that it surprised by dermy even. It took a lot of ruling things out before finding the right answer. Keep a journal of your day to day activity and how you feel and see if that will help at all, take it to your appointment. They will find out what is wrong but we have to learn when to be patient and when to be proactive.

I know this does not sound like much help at the moment but I think everyone on this site has been where you are and would tell you that it took awhile for their dx also. Ask your doctors if there is anything that you can do other than the journal that can help them to help you.
Best Wish for finding your answer,
Tammy
 

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Hi Jo,

You are right in querying the CFS diagnosis because of the lack of post exertional fatigue, it's one of the diagnostic criteria.

http://www.patient.co.uk/showdoc/40000806/

I really don't know what to advise you :( except that you should pursue some treatment to at least relieve your current symptoms when they crop up. I would also be very prudent about keeping a diary of any other things that occur, this could be invaluable if this does develop more clear cut signs of an autoimmune disease.

love
Lily
 
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