Consultant Follow Up

[Missdaisy]

Hi Everyone. I wrote to you all earlier this year re my pending visit to a consultant and what to ask - well, I went to see her (expected to see Dr Bruce but he wasn't available), anyway, the consultant I saw did a variety of tests, checking skin, reflexs etc and lots of questions. My latest blood test proved negative for APS so they took another load from me. I didn't get any answers, expecting to go again in a couple of months but they have referred me for Nerve conduction tests due to the problems / symptoms with the nerves in my legs (internal jittering etc). However, not sure whether this symptom is related to APS or not. Im slightly nervous about the tests and hoping they don't find anything horrible. Confused as to why two previous blood tests proved positive and this one didn't. I just want to know what all these crazy symptoms are due to, if anything, or are they really in my mind!!??

[jessielou]

Hi hon,

Even if results are negative, there is sero negative APS. I'm pretty sure we don't all test positive all the time anyway. The nerve problems and tingling, pain etc sound very familiar too hon.

I hope you get some answers next time you go and the right treatment. I had nerve conduction test in my hands after a particularity bad rheumy decided I had carpal tunnel, mmm it was my feet that hurt more! Try not to worry to much hon, thinking of you!

Take care gentle hugs love Sheena xxxxx

[ebulfin]

Hi, I hope you get some answers soon, but the doctors have a very hard time proving a diagnosis of APS as there are so many other autoimmune and general disorders that can "cloud" the decision. The Nerve Conduction Tests could prove beneficial in a number of ways, if nothing is found in the nerves then they will have to look further as to what is happening in your legs and if (I hate having to use the word "if" as it sounds like a cop-out) it is related to the two positive tests for APS. Once they have ruled out all other probable reasons they will start looking at all the possible ones, of which APS is just one.

I really hate the terms of negative and positive as they are used in relation to how many antibodies are found at the exact moment of a blood test. This can change drastically in a few hours so the test is already a possible risk of causing confusion. Then there is the term negative, which leads people to believe they found no antibodies, whereas it really means they found them in numbers that would be present in a "normal" healthy person. We know from studies and interviews with medical professionals that those of us with APS have undergone a trigger event in our lives that has converted the normally healthy antibodies, that are present in everyone, into killer antibodies that attack and destroy healthy cells. Surely anyone with one iota of sense can see that any amount of killer antibodies are dangerous, yet the test results (based purely on the low numbers in a healthy person) are described as “negative”. There is no such thing, unless they find absolutely no antibodies at all, which is impossible.

Good luck with the nerve tests and with the follow-up consult when the results are all in.

Regards

Eddie

[viv112]

My peripheral neuropathy was diagnosed from nerve conduction tests 2 years before my APS was diagnosed. But I must warn you that my neurology consultant considers my peripheral neuropathy to be 'idiopathic' and that it is just a co-incidence that I have APS as well. There may be other neurologists who recognise that there is a link.

Also there isn't an easy remedy for nerve pain that comes and goes, because the only medicines that dull nerve pain need to be taken all the time and have side effects. My experience is that neurologists dont have much time for mild peripheral neuropathy and prefer to concentrate on the more serious disorders like MS and Parkinsons.

My dermatologist is more open minded and believes that any disorder that effects the blood circulation and the skin is also likely to effect the nerves.

Do you have livedo reticularis, the mottled skin, on your legs and arms? I have this, and this is also a diagnostic symptom of APS.

[Missdaisy]

Hi, thanks for your comments. No I don't have livedo reticularis but I do get rashes mostly on my chest in warmer weather - always put this down to prickly heat. I don't have pain either with the nerves, just really jittery nerves in my legs, like they are alive inside, and they are worse at certain times of the month when Im due on. Its a bit like internal trembling but can't be seen from the outside. Asprin has helped loads with it but it still happens but not half as bad. Guess somethings I will never get an answer to eh?

[MaryF Administrator]

Hi there, I hope the various professionals get to the bottom of things with finer details for you soon, and have some common sense, seeing as you have had the previous two positive tests. Mary F x