[ashli]

hello again! so i was told the doctor would phone when my ANA/RF results came through. but i havent heard and its been over a month. so i phoned today, and the receptionist (im still not trusting them!) said the doctor told them to tell me the tests were negative, but she didnt say what tests! im not happy. the doctor should have phoned!
i have an appointment for monday morning, so hopefully ill get some answers.

if the results are neg, im really worried, as i dont think ill find out what the **** this is. my lifes just horrid atm. i had to go home from work early and cancel a dinner out, because i could hardly walk from pain in my hip, which has only just started to lessen. ive started getting pains in my back and ankles now too, which is just brill.
do you think ill get some answers even if results are neg?
thanks for the help, im just not in a good place atm.
xxx

 

[Katharine]

Hello Ashli,

I'm sorry that you haven't had a better response on your ANA/RF results.

I think that what happens very much depends on the doc. Lupus (or any other autoimmune disease) is not diagnosed by bloods alone and I, for one, would never have been diagnosed if that were the case as all the "screening" bloods that they do first have always come up negative for me.

I think the only thing that you can do right now is try and relax (as much as poss) and take it as it goes.

BUT you need to go into that appointment nice and calm and confident! Confident that there IS something wrong with you even if there is nothing showing up on bloods. Sometimes actually saying that very calmly but confidently to a doc actually gets them to take you more seriously. Breaking down in tears is rarely helpful at this stage and may lead them to say you're depressed (which you might or might not be but that's beside the point, as you know it's not the ONLY thing going on).

I don't know if you have had any rashes? If so, I hope you have photos to take with you (if you still have them, take the photos now before they disappear the very day you see the doc). You might be able to ask the doc if seeing a dermy would be worthwhile, perhaps to do a biopsy. Some people who are negative on bloods can be positive on a biopsy (and vice versa). I had a biospy done of an unaffected, unexposed area of skin (my stomach) and that clinched my diagnosis along with the clinical signs and medical history.

I wish you the very best of luck for Monday and hope that either there are some answers or some directions to look into.

Katharine

 

[ashli]

hi katharine. thanks for your reply im trying my best to relax, but its difficult, im just scared no-one will take me seriously if my results are neg.
i will be going into the app with my calm head on, definatly.
i havent had rashes, no. i have, though, suffered from urticaria and hives for the last 7 years. and i also have a rash on my cheeks, which ive had for as long as i remember. i think it maybe rosacea, but ive not had a diagnosis.
do you think these are relevant?

what can a biopsy show, that bloods cant?
thanks again
ashli xx

 

[Katharine]

Hi again, Yes, all those are very relevant and should be photographed and pointed out.

I used to have the same sinking feeling every time I saw I doc, I thought they'd never believe me...now they're wanting to help me get invalidity allowances :wall:

I had urticaria and hives which I had never associated with my other problems. They have all but disappeared on treatment. I also had "redness" across my face, v line and neck. All of those are relevant.

I was "lucky" in that my redness across the face decided it would suddenly and spectacularly turn into a very raised, angry looking malar rash. From then on in, it got easier to talk to docs. Funnily enough, I've only had it that bad once since and never bad again since starting medication.

Katharine

 

[spellbinder]

hi ashli

i don't know how long you have been ill and seeking a diagnosis but katherine gave you good advice. as others can tell you it can take quite sometime to get a conclusive diagnosis and also bloodwork is a tool. medical history and clinical observatioins are the other tools used. unfortunatley you may have to get another rheumy, and it may take more time than you'd like. so keep a journal of symptoms and how long they last. keep asking question but do it calmly and sincerly.
as far as the phone call goes, in the states i have yet to have a doctor call me and give me test results nor are nurses or receptionist allowed to give results.

hope you get your answer soon, and don't give up
take care
feel better
hugs and kisses

 

[ashli]

ah thats great, ill definatly show them some photos, my urticaria tends to be on my arms, but lately my bottom lip and tongue have been swelling. which is horrible. i also have some photos of this. thanks very much for the help

ive been having symptoms for the past 5-7ish years. but last time i went to docs (about 5 or 6 years ago, when i was 14) i had physio, which made no difference. i went back 2 years ago and was told i had a difference in length of my legs,which was causing all the problems, and was given insoles. which make no difference, and i know that my problems are not that. which the doctor confirmed in january.

im trying to keep positive. hopefully things will get sorted on monday!
thanks again for the help
xxx

 

[Katharine]

Ashli, I don't want to dampen your enthusiasm but I don't want you to come crashing down with disappointment either, I doubt things will "get sorted" on Monday. Diagnosis of such things is extremely complex, so, although we may complain about certain docs, we need to remember that it is in fact very tricky for them too.

However, I do hope that Monday will be a firm step on the road forward. Then, you need to keep patient and determined and pester and simply not give up until you get there

Katharine

 

[ashli]

ah yeah, i didnt mean to find out what it was! hehe im not the best at wording things. i just meant hopefully ill find out what they can do, and a bit more about the test results and stuff! thanks x

 

[Lily]

Hi Ashli,

I wouldn't worry too much even if your ANA is neg, your inflammatory markers were high so that points to something going on. You have an appt with a Rheumy in a few weeks time don't you? Good luck and it's good advice to take photos along to that appt and also copies of your blood results. I know you said your GP was going to organise that?

love
Lily

 

[Clare.T]

Hello Ashli

It certainly is discouraging if ANA is negative assuming the GP's office was right. The RF is neither here nor there, except it suggests that RA is not the problem.

I think your chronic urticaria and this swelling of the mouth tissues could be very significant. The swelling could be a form of angioedema. You might want to think if the mouth swelling is ever associated with tummy pains ore even genital discomfort. I have heard of cases when chronic urticaria has preceded a lupus diagnosis for years.

The relevant tests are for a protein called complement. Complement testing is a common feature of the more specialist tests for autoimmune disease or immune disorders. Complement plays an essential role in the immune system activity. Low complement in SLE can indicate active disease or a flare.

Then there are inherited or acquired complement deficiency states which might be associated with lupus or lupus like symptoms. Mind, they are rare but all the same, on the leave no stone unturned principle, it's a line worth pursuing.
You could always casually throw out the words ' I was wondering about complement deficiency ' to the doctor ! :lol: He might be rather surprised but good doctors don't mind informed patients and it is a perfectly reasonable question. You could always say, quite truthfully, that a friend mentioned it as a possibility.

The relevant tests are C3 and C4, and a C50 or C100 is usually done, I believe. A particular deficiency is of C1 esterhase inhibitor.
I happen to know about this because one day my daughter's lips started swelling. She had gone upstairs to get ready for a night out looking perfectly normal. After about 15 minutes, she came down rather distressed with her mouth already looking like a really bad collagen injection. As we spoke, her lips visibly continued to swell so we rushed her to A&E. They kept her in overnight with a drip feed thing in her hand incase they needed to IV antihistamine but she was OK.
We never found out what caused it but the strongly suspected culprit was an aspirin she'd taken at a friend's house. We have never used aspirin in our house and indeed rarely needed that sort of thing.

Aspirin is a common trigger for this sort of reaction. It could be useful to keep a food diary to see if the swelling has any connection with food. 'Aspirin' occurs naturally in quite a few foodstuffs !


I mentioned this to my then rheumatologist who was very interested indeed. He asked if she had any lupus like symptoms and had ever had this before.

Then there's something called hypocomplementic urticarial vasculitis, HUV. We have threads about it on Related Conditions section.

Biopsies show up certain sorts of cell deposits in the skin that can help distinguish what's causing a particular sort of problem. Sometimes there might not be any particular indication in blood work, other times the biopsy would be confirmation of what's already suspected from symptoms and blood work, so the right treatment can be given

All the best

Clare

http://www.patient.co.uk/showdoc/23068988/

 

[ashli]

hiya, yeah my rheumatologist app is 4 weeks tomorrow. and the doc here is arranging print outs of blood tests.
ive also taken photos of any rashes, i had one last night, which was hives. i also have photos of my lip from when it swelled, luckily i always take photos of my urticaria. ill definatly think about it possibly being caused by something ive eaten. we'll see!

after i told my mum about the docs, we spoke to my aunt. who's a nurse at the doctors surgery. she told us that the doctor would phone me herself or get my aunt to phone. or if i really wanted to talk, i was to get in touch with my aunt. and that the receptionist would NOT be allowed to give my results, after the last incident. so im not sure if the results are the new tests or not. ill be speaking to my aunt before the app, so she can let me know.

ive had such a hassle with these receptionists, and the doctor. ill be glad when im done there, and just have the rheumy!

thanks for all the help and advice, and for listening! xx

p.s sorry if this is boring! i just get stressy xx

 

[Clare.T]

Nothing boring Ashli, I assure you

I am not sure I was right about aspirin /salicylic acid being present in fresh foodstuffs, because when I checked it out I could find only this reference

Sodium salicylate is used to a small extent as a food preservative and as an antiseptic in mouthwashes and toothpastes

But you might be having a reaction to some thing else in foods either fresh or additives.
It often isn't satisfactory when the receptionist gives results over the phone. They do this in our GP surgery too, but they do call when there's anything abnormal, otherwise you have to assume all is OK. It all depends on how well the practice is run I suppose. Luckily ours has very good receptionists



Clare

 

[onetay]

Ashli,
I am sorry that you have waited so long for the results only to be short cutted by the doctors employees. He should of called you or the nurse with the results so if you had questions they could of been answered at that time. I would think that you should be able to speak with your doctor at your next appointment about what happen. I would also let the doctor know that you are still having these problems and that something wrong and where do we go from here? You might want to ask what results were neg. also since you were not able to speak with someone about your results.

 

[LolaLola]

As far as I am aware salicylates occur in tomatoes as well as certain other foods. (can't think what though)

x Lola

 

[Joandublin]

Hi Ashli

Here is some information on food containing salicylic acid. It might be of use to you in determing if there is a food allergy going on

http://www.food-info.net/uk/qa/qa-fi27.htm

Luv n stuff
Joan:rose:

 

[Clare.T]

Thanks for that info Joan I am glad I hadn't misremembered but now need to work out how I didn't find a list when I googled.
Also, what on earth is 'choko'. 'Mushrooms fresh' in the second group compared with 'champignons' and 'mushrooms' in the top group. I wonder how much you would have to consume until you got a useful dose of aspirin.

Cheers
Clare

 

[Lily]

Hi Clare,

Choko grows on a vine, they are light green in colour (white inside) and similar shape to a large pear. Supposedly a type of vegetable :hehe:I remember them when I was a child, they are rampant as a weed and have the blandest taste you could imagine The amount of effort to turn them into something edible makes the whole process not worthwhile imho However because of their rampant growth habits, they were considered a cheap and plentiful veggie.

love
Lily

 

[Joandublin]

Hi Clare

Well it was a complicated process trying to find the site.

I googled 'salicylic acids what foods' :rotfl:and up popped the food site at the top of the list!

Sometimes the simplest questions are the best! :lol:

To answer your other question about how much one would need to eat to have the same benefit as aspirin... if you fancy trawling through this link you might find something of interest....

http://qjmed.oxfordjournals.org/cgi/content/full/94/8/445

This other study seemed to indicate that vegetarians had doses of salicylic acids similar to those on low dose aspirin.

http://esciencenews.com/articles/20...make.aspirins.active.principle.salicylic.acid


Love
Joan:rose: