[julsie]

I hate being a moaner,but I have to admit,I'm quite good at it but just lately I am starting to doubt myself and wonder if I am just going completely bonkers:sigh:
Sometimes I feel so ill I'm sure I must be dying,and yet my bloods come back normal except for rheumatoid factor.Today I overdid things because I was stripping wallpaper.I get a sore throat if I overdo things and feel like I have tonsillitis coming and a flushed ,hot face.My heart keeps skipping a beat and I feel winded.
I just did one of those occult blood tests to rule out bowel cancer because of my stomach swelling up to 7mths pregnant size,which was thankfully negative.
I have petechaie coming on my arms but my platelet level is normal.My doctor now admits that something autoimmune is going on but won't refer me to a dermatologist.I wonder if it is worth going to St.Thomas's for the follow up when I'm sure doc will say nothing significant has shown up.I feel in limbo and my husband keeps saying he wants his wife back.Antidepressants,smantidepressants have made *** all difference because I don't feel depressed:wall:
I am feeling more like an intruder on this site as I don't have a diagnosis,but you're all so lovely to talk to,but a lot of you seriously poorly and I am feeling like such a faker.Surely it must be in my head to feel this ill but nothing show up in blood tests?I think my doctor is convincing me!
Julsie

 

[BigSis]

I am sorry (((Julsie)))
I would keep the appointment at Tommies whatever.
Don't feel like an intruder on the site ...........you must know us well enough to understand that noone is going to tell you to clear off:rotfl:
Anyway you surely need some support on this long and tortuous journey to diagnosis.:worried:

By the way that flushed swollen tonsilitis feeling is exactly how I feel at the start of a flare.....especially when I've overdone things. It seems to be asociated with my low white blood count.

Take care

 

[sam101360]

Julsie:

DO NOT doubt yourself...you know your body best. I am an almost completey serum negative SLE person. I was dx via skin biopsies and symptoms. I have recently been told that I have kidney involvement, but thank goodness no damage to the kidneys, so we just keep an eye on them and pray.

Keep the appointment, document whats happening with your body, and don't give up.

Best of luck - Stephanie

 

[Maia]

I would keep the appointment and be prepared to ask the questions you most want answered: like what is wrong with me!?! and... is it appropriate to try some treatment beyond symptomatic to see if it will help? Why are these spots forming on my arms? etc.

The positive rheumatoid factor could very well be meaningful. Ask about that. Write a list and don't leave until all questions are answered to your satisfaction.

You are not alone - you belong here so don't worry about that. Unfortunately many people struggle to get a diagnosis. Take care & hope the follow up appointment is a good one.

 

[LolaLola]

Dear Julsie,
Please don't feel like an intruder. Nobody else views you that way.
I was sero negative for a very long time,so I was actually being treated before my bloods turned positive.
In my experience you can be really ill and still not show it in the blood tests.
Sending Hugs,
x Lola

 

[julsie]

thank you,everyone:foryou:
Julsie

 

[seashell]

Julsie,

Just want to give you a big hug (((((worried: )))))))

Im sure we all have been where you are now and know the **** you are going through....

Your doctor should do a ANA blood test if he hasn't already. If not you have the right to ask for a referral to a rheumatolgist.

Take care & good luck

Shell

 

[cemc]

Me too. Seems like I keep getting told that there can't be anything wrong with me because I have too many symptoms to have this, or that, or some other disease. And if I have too many symptoms for it then I don't have it. Go figure. The bloated belly worries me too. My waist size has increased 3 inches in a month, even though my weight has remained pretty much the same (I've been trying to lose some weight). Also my face has got really puffy. GP says its just wind.

 

[halfpintfl]

Oh Julsie, Julsie, Julsie, what in this world are we going to do with you??? I know the perfect answer, There are a lot of us on this board, me included, that could use a "Pity Party". So thats what I'll do, throw a pity party. I would certainly go to the appt. that you have at St. Thomas, no matter what. Have all your symptoms down, go back as far as you have to, write all the meds that they have put you on that didn't work. Make a copy to give to him, and tell him that it is for him to put in your folder.Anyone that has chronic, ongoing illness, will have depression, so please hon, give it some thought, . The right one will put the sunshine back in your day. And if the doctor that you are going to see, wants to brush you off, say" well, can yopu at least give me something fo pain, thin is interupting my daily living. If he says yes, then you will have to come back for a follow up, and that's good. Take care of you dear:wink2: ​

 

[Katharine]

Hey (((((((Julsie)))))))

I completely agree with the others. Definitely keep that appointment that you have planned at St Thom's!

I went through years of doctors not believing me and it is extremely frustrating and you do get to the point where you start to believe that the docs are right and it's all in your head. That impression was reinforced for me when I suddenly went into a two year remission. I then completley convinced myself that I had been sufffering from stress.

Looking back, and knowing what I know now, I know that was definitely not the case.

When I got ill again, I started going back to my GP but the only blood tests the GP was doing was ANA and that kept coming back negative. Luckily he still believed me and even told me that he thought it was lupus - he wasn't overly bothered by having negative ana. I went to the rheumy a few times and kept coming back with no real answers either.

The breakthrough came when I complained of the dry eyes and mouth that I get to a greater or lesser degree and the rheumy decided to send me to the dermy for a biopsy on the inside of my lip and a skin biopsy. She was looking for sjorgens but the skin biopsy came back very strongly positive for lupus.

After that the rheumy found that other bloods were out and confirmed the lupus and APS problems.

I have never had positive ANA to this day, and may not have now as my tretement has succeeded in improving all my other blood work and I do feel a lot better. I know it is rare not to have that ANA but the laboratories over here won't even check the more specific antbody tests if ANA comes back negative.

I think what I'm trying to say is the same as the others. You know that this state you are in is defnitely not normal and you just have to keep at it until you get some answers whether it is lupus or something else.

Oh, and you are NOT an imposter!

:hug:
Katharine

 

[karen.w.]

(((((julsie)))))

you have been given great advice from the others so I just want to send you big strengthening hug's :grhug: & tell you to hang in there,you will get there in the end.
it really does sound like you have got some sort of autoimmune situation going on but unfortunately you're one of the unlucky ones who will take time to diagnose :sad:

please let us know how you get on with your appt at st thomas' because YES you are going julsie because we've told you too! :hehe: or else
take good care julsie & remember we are here for you & you are most certainly not an imposter!

best wishes karen x

 

[julsie]

oh,you lot..you're going to make me cry!thank you:grouphug2: for your support,
Julsie

 

[jane1]

hi ...hows things going?......i think you go to st tommies a few days b4 me....have you harrassed your gp abt a dermy appointment yet?.......hope your feeling a little better ......jane:hehe:

 

[ALWIN]

Hi julsie

Just wanted to add my voice to the throng to say I agree with what eveybody is saying.

I wondered if I had been misdiagnosed because of negative blood results, but my consultant said 'your symptoms are more important than positive blood tests ... lupus is important, so we should monitor you and you should continue to take your medication'.

No chance of my not doing, as it happens, but I have only had 1 positive as far as I know, and that was for antiphospholipids. No mentioon of ANA or the other things frequently listed here.

I went to London Bridge hosp which is similar team to St Thomases, I think. They sorted me out, and my local consultant agrees with them.

There is a 'not diagnosed yet' bit here for a reason. I think it is to welcome people like you. It too came here before being diagnosed, and would never have been diagnosed had I not. So! Don't worry about the imposter thing. We all feel like that pre diagnosis.

 

[julsie]

Thanks Alwin,
I may end up going to London bridge.I tried to change G.P today as mine won't refer me to a dermatologist but no other doctors are taking patients on.Only my doctor has room for new patients,hhhmmmm!can't think why?8)I'm sure I'll get to the bottom of it one day,
Julsie

 

[LolaLola]

Dear Julsie, London Bridge would be excellent. I usually go NHS but have been to London Bridge when in a tight spot. The staff are very considerate,you will get on well there.
Sorry you feel so bad.
x Lola