[wolfieUK]

Following on from the thread:
Requested Blood Test Results for the last 11yrs

Hi there

Hope everyone had a great Christmas, etc.

I had my haematologist appointment last week!

Well, basically~she went through my symptoms with me then explained that the Rheumy would have looked at all the physical effects and that she was just generally interested in my bloods! OK that was fine, she explained that the positive Lupus Anticoagulants found in my bloods were basically for the purpose of the hospital (???) ie:it didn't mean I have Lupus but meant that along with me being slightly overweight & also a smoker then I would be a high risk factor for blood clots if I had an operation or indeed long haul flights!
So I pointed out~ok so why is my APPT flagging HI it is now 1.6~which obviously means it takes longer for my blood to clot!!!~hence she changed the subject!
She questioned about previous operations, I explained that after both pregnancies I haemorrhaged, she asked if I bled more than the norm after my tonsillectomy? I said seen as I was only 8years old at the time I wouldn't know!
She then gave me a physical where she looked down my throat, felt my neck and then pressed my tummy!~she pressed at one point which was sore & she noted my discomfort! & questioned as to how long had I been sore there (by this time, I had lost confidence in her!) & sarcastically said that it only started to hurt when she pressed it! which was true, I had not noticed it prior to the examination! it wasn't sore after she released the pressure! she then stated that perhaps it was due to my IBS! (even I worked that one out!)

I then explained to her that obviously I was concerned what with the family history ie:my sister with MS. First she said that she wasn't interested in the family history as that would be down to the Rheumy to investigate! (??) then she questioned why I thought there would be an added problem with my sister having MS, I said as Lupus & MS were related conditions which she point blankly told me that they weren't!! to which I then argued with her that they were also along with Intercranial Hypertension which my cousin suffers from!

At this point I felt like walking out! I just felt we were going round in circles! she asked why I was concerned about my results? I asked her wouldn't she want to get to the bottom of it if they were hers??
I said that I just wanted someone to say "no I didn't have lupus", "yes you do have it" or "well we don't know!"
I asked these three questions:
Why these results are showing up in my bloods?
Whether any of my illnesses are linked, or is it just pure coincidental?
And has Antiphospholipid Syndrome been riled out?
Which she was honest enough to say she couldn't answer any of them!
She asked which of my symptoms did I want to investigate, I said all of them! but mainly my migraines, she asked how long I'd felt tired which I couldn't be specific with many of my symptoms about their time scales as basically they have gradually crept up on me over the years!

I have an appointment in 6 weeks to view the results of the bloods taken & discuss where to go from there, she then said she could understand why I wanted to get to the bottom of it all! (??)

Even my hubby said that he felt like I knew more then she did!

so please can I ask you guys what sort of questions should I ask for the next time?
Many thanks
Wolfie

 

[LolaLola]

Dear Wolfie,
I am a bit brain dead tonight but I am sorry you are having this trouble.
I just wanted you to know someone sympathises. I am sure you will get lots of good replies and if I can come back and say anything useful I will. (I have just totally blanked)
x Lola

 

[marie2]

Hi wolfie
I was just reading your post, that is so frustrating with a doctor like that. I do hope you can get the answers that you need.
You know my sister has MS she was diagnosed about 4 years before I was with Lupus. I know they are both auto immune disorders, and I've heard it can run in familys. My heart just breaks for jan when I see her hurting she is the most beautiful person inside and out. wounderful Mother of 5 kids. I worry about my children and down the line. Oh how I would hate to see one of them get this. Everytime I hear one say they hurt in my head im thinking please no no don't get this.:worried:
Good luck, I am thinking about you.
Marie2

 

[tbunny1]

Hiya Wolfie -

The Lupus Anitcoagulant antibody test does not determine if you have lupus or not! :? I know it's confusing - it is a test used to diagnose antiphospholipid syndrome.

They named it the lupus anticoagulant when it was discovered, as it seemed that everyone who tested positive for it also had lupus. Further research has changed that - you don't have to have lupus to test positive for LA, and not everyone with lupus has a positive LA test. You don't even need to test positive for LA for an APS diagnosis now.

Seems to me your rheumy sent you there not for a lupus diagnosis, but for an APS consultation. The questions the doc asked about your pregnancy and surgery outcomes were probably trying to determine if you had any clotting incidents. Chronic headaches, fatigue, and even sypmtoms that look like MS could be APS. I'm sure that's why the haemo told you to be carefull with surgery. There are several good links on the home page of this site with more information on APS.

Did they come out and tell you you had APS? Were you put on anticoagulation therapy or asprin? 1.6 is not that high for a protime, most APS patients are kept at 3.0, but I see your point that your blood does not appear to be that thick or clotting seriously.

I agree with you, MS and lupus are both autoimmune problems - who knows what the doc was thinking. Sounds like you two just butted heads - I know some people just strike me that way, and I get irritated with them from the first moment they open their mouths.

Here's hoping your rheumy will get those labs and explain them to you before you have to visit that haemotologist again. You might want to call their office and ask in a few weeks. If you do have to see that doctor again, think positive, and maybe she just had a bad day. Naaa ... but think positive anyways! :wink2:

Be Well

 

[wolfieUK]

Hi there
Many thanks for your replies
I do take aspirin every morning as when I was pregnant for the 2nd time, I was put on it~to try & prevent pre~eclampsia developing in the 2nd pregnancy as it did with the first. I found by taking it that I did not suffer with so many migraines. So after trying Pizotifen on & off for a few years to try & kerb the attacks, I found that whenever I took this I was like a walking zombie & could not wake & starting work at 6am (I only work part-time) half the week~I had a couple of occasions where I was late for work
So taking on board everything, I decided to take dispersible aspirin every morning...though it hasn't stopped my migraines all together it has lessened them & also I don't feel so stiff in the neck area.
My 2nd cousin also has MS aswell!
I haven't got to see my Rheumy again, not unless I want to.
Its hard to explain, I feel fine in myself, & I do hope that all my other symptoms are just coincidental. But I wonder if I'm looking for something that isn't there & wasting everyone's time, or infact that the bouts were I'm feeling so tired, poor memory, migraines, joint stiffness & pins & needles, chest rashes, eye sensitive to bright lights are just me getting older! :lol: especially when I read some of the stories on here at what people have to go through just to get through a day & my heart goes out to them.
Its hard to explain to them how tired you feel etc, I mean for someone who used to have to goto to bed to goto sleep as I wouldn't feel comfortable sleeping anywhere but my bed~to sat on the sofa watching the TV one minute & then waking up 5am in the morning (thankfully not a morning I had to goto work) still fully clothed and still wearing my glasses! :blush:
I'll have another look through the APS site & see if can muster up some more facts to blind her with! :lol: & see if I can come up with a specific questions to ask her ie:any relevant test etc they may have/not done.
Many thanks again
Take Care
Wolfie

 

[wolfieUK]

update

Wow I take it all back ....I have just had a letter through the post (yes our post is late around here!!)addressed to my GP & CC to me regarding my appointment last week & she basically points out all my conditions (so she was listening!):thumbs:
She also states that I had been seem by the Rheumy who reported no evidence of systemic Lupus.
She ended that on examination there were no positive findings & that she had explained to me that at present I have no other risks factors for clots and therefore do not require formal anticoagulation BUT in the event of surgery or prolonged immobility it is likely that I would need prophylaxis in the form of heparin. Also that they have repeated the Lupus Anticoagulant screen & also an autoimmune profile of the bloods taken that day. After discussion with the consultant it is felt that an MRI brain would be useful to exclude any small vessel abnormalities & they will see me in 6 weeks time.:innocent:
though she did aso did write that there was no history of clots & that I was a smoker * drank minimal alcohol. I have no risk factor for HIV & my relevant family history includes a sister with MS.

I feel guilty now :sad: I honestly thought the woman wasn't listening! think big appologises when I see her next. So you were right TBunny I think we just butted heads!

Thanks again
Wolfie

 

[tbunny1]

:more: Oh Bravo! Even though her bedside manner skills have much room for improvement, it sounds like this doctor is a good diagnostician anyways. She's got 50% of it going on at least!

The MRI is a great idea, if nothing else to rule out some things (eh hum, like you have a really strong family history for MS). Sometimes it helps as much to know what we DON'T have as it does to know what we do.

All these autoimmune diseases are terribly hard to diagnosis and figure out, and it takes a long time often to get a firm diagnosis. It doesn't mean neccesarily that your doctors don't believe you have a problem, they just don't know what it is.

I know, it's terribly frustrating - been there, done that. Believe in yourself - if you feel like there is something wrong, then there probably is. Doctors are just humans after all. All they can give us is medical opinions most of the time.

This forum is a sanity saver. Keep coming back, use the learning resources on the home page, ask questions, and let us know how you are getting along. You will not find much more sympathy or understanding anywhere else.

Be Well

 

[wolfieUK]

Relief

Hi there Just thought I would update you:
good newsish on my test results! had a brain MRI apparently they did find a brain & all is normal in that department...tho I know plenty who would beg to differ!:rotfl:
Basically the long & short of it is that I have this lupus anticoagulant thing in my bloods at the moment its not doing me any harm & it obviously isn't connected to Lupus or MS, but it does mean I am more susceptible to DVT's on long haul, ops & immobility therefore if any of these were to occur then they would look into giving me heparin. so basically the rest of my symptoms are down to old age!! :hehe:
As for my migraines she thinks they are 99% menses related, so obviously I will go down that route now.
As for my other symptoms:they are obviously not that severe to be concerned about.
I'm happy with what she's said, and now feel more relaxed in knowing that at this stage I have gone as far as I can!
thank you again for all your support & advice :wink2: & without you guys I wouldn't have got this far & still be wondering!
Hope you have a great Easter
Take Care & again many thanks
Wolfie xxxxx

 

[halfpintfl]

Hi Wolfie, You are every dr.'s worst nightmare,,,,you know
for sure you have something wrong inside you, and you want answers ffor it so you can begin to correct it. I recently changed Rheumy's, and I walked in andsat down,
She came in and said hello. Asked me what she could help me with , and I said " well, basicly nothing, I fell ok and I just need a refill for my meds. That promped her to say
that I can't just walk in to a new dr. and ask for prescriptions. I began to explain, I got frustrated, and I got up and walked out. At the second appt, they notified me that she had made one, I appologized to her for all the misunderstandings.You need to write down your symptoms, make a copy for the Rheumy's file, bloods are only a guide , not a diagnosis, your symptoms are more importment plus what the dr. observes, Only a Rheumy can dx you.:wink2: ​

 

[Lily]

Hi Wolfie,

I'm glad that your MRI turned out ok and also that they at least have acknowledged your problems and have a plan for them in your times of need.

I hope that things improve for you and that you can rest a little easy now about things. :hug:

love
Lily

 

[wolfieUK]

Thanks for the replies ....I have been doing a little more reading about Hughes Syndrome & I know someone kept pointing it out to me that this is what she felt I may have, but I suppose I was looking for the Lupus connections & researching that more then the APS .

So I have written this letter to the comnsultant (as obvioulsy I only saw a monkey & not the organ grinder!!)

Dear Dr *****
I am writing after being discharged from your clinic after seeing the specialist on Wednesday 19th March 2008.
I understand that my symptoms, brain MRI and blood results, thankfully do not point to Systemic Lupus, even though I have had a history of positive Lupus Anticoagulant antibodies.
Though your specialist did state that if I have to have an operation, immobile and long haul flights may need to be accessed and possibly administered Heparin to alleviate the possibility of a risk of deep vein thrombosis.
I did try to raise the question with the Specialist, on my first appointment about whether Antiphospholipid Syndrome, “Hughes Syndrome” had been ruled out, with which she appeared to avoid. Or I may have not understood her response clearly enough.
I know I have had no history of clots or miscarriages (though obvious pregnancy problems ~which the 2nd pregnancy I was advised to take daily aspirin) Both pregnancies had to be delivered by emergency Caesareans, both were low birth weights, especially my daughter even though she was 10 days overdue. I was not permitted back on the contraceptive pill after the first child.
Also the specialist did not appear to understand my concern that my sister has MS and I understand that the conditions were linked~ she didn’t think they were! I know I am not medically trained but I do understand that these are autoimmune diseases. We also have a history of Diabetes type 1 with my maternal Aunt being my closest relative. Also Crohn's disease is from the same maternal side.
Also I did try to ask a question about my brain scan but felt as though the specialist did not allow me to put questions to her, that’s why I was quite keen to accept her diagnosis and leave.
The question being was that I was expecting an injection before my Brain MRI as I know both my sister and my maternal cousin who has Intracranial Hypertension both had before theirs and I wondered why I didn’t require it.

So basically I would just like to know:

Has Antiphospholipid Syndrome, “Hughes Syndrome” had been ruled out?
And why an injection wasn’t administered in my MRI?

Thank you for taking the time to read this and apologises for taking up your time.
Kind Regards

So we will see if I get a reply!
Looking back at that last appointment, after she stopped me from butting in (asking questions) I just gave up & just wanted to get out of there! when you've waited over an hour & 1/2 for the appointment you just have enough!
anyway hopefully we will get to the bottom of this!!!!!
Thanks again
Wolfie
xxxxx

 

[wolfieUK]

update

Hi there
I'm still around!!
Well, I got a reply! on the 9th May!
Telling me that for PAPS to be diagnosed that
1. Lab Features
a. Lupus Anticoagulant
b.Antiphospholipid Antibodies
2. Clinical Features
a. Venos Clots (egVT)
b. Arterial Clots (eg:Stroke)
c. Obstetric complications
i. Recurrent miscarriage
ii. Unexplained death of foetus beyond 10 weeks gestation
iii. Premature birth of otherwise normal baby before 34 weeks gestation due to pre-eclampsia or placental insufficiency.

She can't give me the diagnosis as my son was born 35 weeks due to pre-eclampsia, & growth restricted, even though its close to the above definition. She explained that sometimes the conditions evolve ie:undiagnosed diabetes.
Then she states that as I have not developed any further features of this condition since his birth, then this is reassuring!

She goes on to say that an increasing percentage of the population may have positive lupus without major clinical sequelae. But there is a suggestion that even in that situation then it does result in slightly higher tendency to form blood clots & therefore the general advice regarding the use of Heparin at the time of surgery!
Then she went on to offer me an appointment to see her in person.

I felt abit more positive though I wanted to clarify with her the fact that though my daughter was delivered by emergency caesar 10 days late, she was of low birth weight which I understood to be down to placental insufficiency.
And also my other symptoms ie:migraines, fatigue, memory loss, aches & pains.
Also as I'm due to take a holiday which involves along haul flight, I telephoned the Travel Insurance to see what I had to do to as this would obviously be classed as a pre existing condition, & if I did end up with a DVT I'd want to be covered & so the insurance company couldn't say I hadn't notified them. They told me to get a name for it, so they could screen it & give me the appropriate cover!
My appointment was today:
basically the main consultant couldn't see me, yet she was the one who made the appointment!
Anyway the long & short of it is though I have to take precautions but I don't have a condition!
When I explained about the travel Insurance he said "just tell them that you are Lupus Anticoagulant positive & therefore more susceptible to DVT & in case of an operation immobility would need heparin & if they need any more clarification then to write to the consultant!"
Because my son was born at 35 weeks & not before 34 weeks then they can't class my pregnancy as being anything to do with my bloods! & as I haven't had a misscarriage or thrombosis, but I tick all the other features then they can't specify that I have Antiphospholipid Syndrome! but if I did in future suffer from any of the two then that would then lead to further investigation & a more probable likely hood of a diagnosis!
So basically nothing different then what the original consultant had written in her letter, apart from the fact that we wasted an afternoon going down there & petrol & a mortgage for car parking!
So I'm basically none the wiser!
Luckily when I phoned the insurance company they were brilliant & have just placed me under the Lupus category (which is obviously the more severe case scenario) stating that I just have the bloods & not the diagnosis, so that in the event of anything going belly up then I'm covered! unfortunately it cost me an extra £80 for the privilege!!!

He has made me another appointment for 6 months time! though don't think I will bother going! will pop up & see my GP & see what he makes of it all!!

So any suggestions from you gals???
would be extremely grateful!!!
Thanks
A frustrated Wolfie xxxxxx

 

[LolaLola]

Dear Wolfie, my Daughter and I have Lupus and Aps. My APS had lots of symptoms but hers was just positive bloods, headaches, confusion. She has had no clotting incidents and no obstetric history, She is only 17. She is being treated for APS. You seem to need to fill very high criteria for a diagnosis.
I am not an expert, this is just my opinion.
x Lola

 

[wolfieUK]

Hi Lola

Thanks for your reply & support
I also could not understand why I had to fit the clinical features to the precise note! It just seems that as they can't tick all the boxes-then this rules me out!
I tried to explain that in my 2nd pregnancy I was placed immediately onto low dose aspirin from the onstart, therefore minimising any risk during the pregnancy.
Even my own GP who admits he's knows nothing about bloods etc, therefore thats why he reffered me! Has even typed in my notes "Mild APS?" after recieving notes from the haemotologist!

Will make an appointment with teh GP for next week, & go from there.

:wink2: Please, are there any more APS sufferers out there that have been diagnosed but not had miscarriage or thrombosis??
Would be most grateful to hear from you
Kind regards
Wolfie

 

[Joandublin]

Hi Wolfie

I was just thinking that it might be a good idea for you to start a new thread with a different title to see if there are others out there who were diagnosed in a similar situation to your own? Maybe under Related Conditions and with a title something like 'APS - how were you diagnosed? Just a thought..

Members dont often read all the posts and the right title might just catch someones eye who can help.

Im glad you got your insurance stuff sorted out. I hope you manage the long haul flight okay. Lots of water, exercise and those ever so attractive stockings...!

Luv n stuff
Joan:rose:

 

[wolfieUK]

Thanks Joan
I've done it

 

[Clare.T]

Hello wolfie You have done really well to persist in getting answers.
I think the main issue is how would treatment differ if you had been been formally diagnosed with APS because I doubt if the formal diagnosis would change anything. It's rather like lupus up to a point - some doctors won't diagnose SLE as such unless there is a lupus specific symptom.

Blood thinners are serious medications with risk and side effects.
It's worrisome that they apparently haven't addressed the symptoms you do have which might well be related to APS. They can seriously affect quality of life even if they won't kill you.

The usual treatment in the UK is with 75mgs a day aspirin and for some people that is enough to relieve this sort of symptom. A lupus/APS specialist might try certain blood thinners at low dose to see if that helps.

She goes on to say that an increasing percentage of the population may have positive lupus *without major clinical sequelae

Did you miss out the word "anticoagulant" *here ?

If so I am sure she is right - that is my own situation. I am on aspirin and antimalarials for the lupus and there is nothing else to do about it except take extra care when I am flying and life style changes as needed to reduce the risk factors. The last statistics I read were that one third of people with lupus have the aPL abs but only one third of those ever suffer related incidents

If there is any possibility of some form of lupus then Plaquenil helps thin the blood too and often brings relief from these sort of symptoms.
Remember that the presence of antiphospholids counts as a criterion for a lupus diagnosis.

All the best
Clare

 

[Raglet]

one thing I can help with - APS doesn't make us bleed more, it makes us clot more.

I know it is really confusing because the tests show we have a prolonged clotting time, but that is only what happens in the test tube. What happens in our bodies is the opposite - our blood clots readily. So whether or not you hemoraghed after childbirth couldn't have any bearing on the diagnosis.

I do know this is confusing for people who are new to this !

MS and APS are only linked in that they have some similar symptoms, but and it can be hard to tell the diffence between the two. Which is different from saying that the two conditions are related (although I do think MS has an autoimmune aspect, but I know very little about MS). It just means the symptoms are similar.

I would ask the doctor if you should take baby aspirin just to be on the safe side. Only about 1/3 of people who test positive for the sydrome go on to have a clotting event, so that gives you a 2/3 chance of not having a clot.

Personally I would not mention this to your travel insurance - they will likely try to exclude clots from your coverage. You can honestly say that you have not been dx with APS, you haven't had a blood clot, and I just would keep quiet about the rest. I had a heck of a time getting them to cover me for APS, and only managed because I am fully anticoagulated and travel with an inr monitor. I can't get any coverage for my lupus though.

The safest thing you can do is get up and walk frequently through out the flight, plus wiggle your toes frequently (this really does stir up the blood flow in your legs).

hth

raglet

 

[wolfieUK]

Thanks for your replies ;o) They are extremely helpful
Yes I did miss out the anticoagulant! (sorry!!)
The main reason I want some sort of clarification is that basically if my fatigue, memory loss, migraines etc are not related to my bloods then I will set off down another avenue.
As for the travel insurance, I'm sorry but I would rather tell them & pay the extra cost to cover myself in the worst scenario, as in the UK we have had so many cases of Insurance companies finding any loop hole to get out of paying! & as we are flying to the States, I just don't want to risk it!
Many thanks again
Have a great weekend
Wolfie

 

[Raglet]

Wolfie, what i am meaning is that sometimes they choose not to cover you AT ALL. I can't get cover for my lupus, even if I pay for additional cover. I can get additional cover for my asthma, epilepsy etc, but I pay for that. They will cover my APS only because I am full anticoagulated with warfarin (coumadin) and travel with my own protable inr machine and monitor my inr on a very regular basis.

They won't cover my lupus no matter how much extra I pay them, so I just have to keep my fingers crossed and hope for the best.

this is what I am trying to say, there is no guarentee that they WILL cover you if you just pay extra. Sometimes they just choose not to, and they are under no obligation to cover you if they don't want to.

Just the way it has worked out for me

hth

raglet