Saw hematologist, eek!, am not sure......

[Leigha]

She told me not to worry about my antiphospholipid IgM count of 118 (here in States 20 or below is normal). I have been and am concerned. She kind of brushed me off, but is doing in depth tests and wants me back in 2 months.

She agrees I can't take any meds (warfarin or heparin) because I am also a hemophiliac (bleeder)..... and she does say this is probably lucky for me. However, this 118 count still sounds very high. Any of you out there get very high IgM counts????? And, if so, are you told it is ok, or are you controlled by your meds?

Don't know if I'm a walking corpse (joke here, kind of.... ;-), or what, heck, anyone who can shed some light on this high count, I would appreciate. I do know I am in 'the more rare' category, but still......

Ok, have a good morning/day/evening..... as best as possible.....

[MaryF Administrator]

This sounds like good summary of the situation, and as well to ask the questions. Hope this is of help. Mary F x

[Leigha]

Thanks for your detailed reply, Lynn. Am not quite sure what you mean by 'seronegative'. Even looked it up.... and it eludes me. I have had a stroke and many tia's but this is not what you are referring to. Also, past tests have confirmed APS diagnosis and also that of low factor viii levels (hemophilia). What she is testing for is to find more in depth information on: the exact sub-type of hemophilia, is it inherited, how bad it exactly is, etc.

Sorry, not to 'bug' you, but am always doing my own research and it seems you know something which may assist me - would appreciate your giving a laypersons definition of seronegative.

Thanks!!

[Leigha]

Got it! In other words many people still have APS despite having tests which don't show it, which can be frustrating. Or, perhaps even, they may not have it.... despite having symptoms. I've always been positive, drat, and had symptoms, drat..... and the brain fog to go with it.

Again, thanks!

[emmaj]

Hi, I am seronegative,though 6 times in the past my antibodies have shown up. My IGM levels came back slightly raised which suggests auto immune disorder according to the upus excellence ctr, yet my specific antibodies arent showin at the moment but still having symptoms etc. interestingly my factor 8 levels showed to be not right but my heamotologist said not to worry it can still be treated along with the APS - but he says they should always be checked twice anyway as sometimes these levels can jump around a little x

[Leigha]

Hi Emma,

It gets quite confusing, doesn't it? Are you on meds for APS? My factor viii levels are low enough that I am unable to take blood thinners, which complicates things.

Appreciate your writing to me. All the best.....