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How do I know if symptoms are from pineal cyst or APS?
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kazza1967 posted:
I have been diagnosed as having antiphospholipid syndrome (Hughes syndrome) for the last 2 years having suffered three pulmonary emboli events since 2008. I am currently on life-long warfarin anticoagulation and have an INR target of 4.0. I have had and continue to have the following symptoms that don't go away even when I am in my therapeutic range for my INR:

Persistent headaches
Tinnitus
Hearing loss over last 1-2 years (now have hearing aids)
Extreme tiredness/fatigue
Disrupted sleep
Difficulty focusing eyes sometimes
Brain fog
Have had a few funny balance episodes

I had an MRI scan recently because of the hearing loss. There wasn't anything found relating to my ears but they did find an unusually large pineal cyst that is 2cm.

I understand from reading around that quite a lot of the symptoms I am experiencing could either be from my APS or from the pineal cyst. I have several questions that I would really appreciate some advice or guidance on:

How do I and the Drs know whether my symptoms are from the APS or from the pineal cyst?

What investigations/treatment should I be having?

Many thanks for reading and for any help you can provide.
Reply
 
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susiemargaret responded:
hello, K --

i did some admittedly quickie internet research tonight on antiphospholipid syndrome (APS or APLS; see PS1, PS2, PS3, PS4) and pineal cysts (PS5), and it led me to a few conclusions that turned out to be different from yours. i am not a medical person (PS6), so this is not to call into Q the thoroughness of your work -- if anything, it calls into Q the thoroughness of mine! -- but i wanted to tell you about a couple of websites in particular that i found.

quite by accident, i stumbled upon a website that compares the symptoms of various disorders and looked up antiphospholipid syndrome versus pineal cysts -- http://en.diagnosispro.com/disease_comparison-for/antiphospholipid-syndrome-apls-versus-pineal-cyst-symptomatic/10661-21927.html . when you click on "show common" to see which symptoms they list as being in common, however, http://en.diagnosispro.com/disease_comparison-for/antiphospholipid-syndrome-apls-versus-pineal-cyst-symptomatic/10661-21927-1.html , it lists only headaches. interestingly, tho, the symptoms for APS do include "sudden deafness"; would you consider the onset of your deafness to be "sudden"?

second, i went to another site that compares symptoms and suggests diagnoses. when i listed symptoms of blurred vision, fatigue, hearing impairment, severe headache, and sleeping problems, http://symptoms.rightdiagnosis.com/cosymptoms/blurred-vision/fatigue/hearing-impairment/severe-headache/sleeping-problems.htm , it brought up two diagnoses, neither of which is APS or a pineal cyst. this prompted me to think about the possibility that your symptoms are not from APS or a pineal cyst but instead are due to some third cause not yet determined. have you considered this possibility?

can you meet me at my subsequent post? i have a little more to say but see that i am approaching the word limit in this one.

-- susie margaret

PS1 -- for other readers, antiphospholipid syndrome (APS or APLS) is an autoimmune disorder that causes abnormal clotting in the veins and arteries; this can lead to chronic headaches, seizures, strokes, and dementia. treatment is with blood-thinning meds such as low-dose aspirin, warfarin, or heparin.

PS2 -- the NIH national institute of neurological disorders and stroke has a very informative website on APS, http://www.ninds.nih.gov/disorders/antiphosphlipid/antiphospholipid.htm .

PS3 -- the genetic and rare diseases information center of the NIH office of rare diseases research lists multiple additional resources with info about APS, http://rarediseases.info.nih.gov/GARD/Condition/5824/Antiphospholipid_antibody_syndrome.aspx (go halfway down the page to the orange box that says "show all resources").

PS4 -- webMD info on APS is at http://www.webmd.com/stroke/antiphospholipid-syndrome .


PS5 -- the pineal body, also called the pineal gland, is a small structure in the brain that produces melatonin, a hormone that controls how your body responds to darkness and light. pineal cysts are fluid-filled sacs on the pineal gland; they are common and rarely cause symptoms at less than 5 mm.

pineal cysts of more than 5 mm can cause a variety of symptoms, including headaches, pressure on the brain because of a buildup of fluid, and problems with vision. if not treated properly, symptomatic pineal cysts can be very serious. the NIH genetic and rare diseases info center has an excellent overview of info on pineal cysts at http://rarediseases.info.nih.gov/GARD/Condition/10723/QnA/26006/Pineal_cyst.aspx . in addition to the Q&A shown, click on the various tabs in the ribbon at the top of the Q&A ("more detailed info," "NLM gateway," etc.).

is your pineal cyst 2 mm or 2 cm? if it is 2 cm, that would be very large.


PS6 -- i welcome, solicit, and indeed beg for correction, amendment, or replacement of inaccuracies in this post.
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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susiemargaret responded:
hello again, K --

this is the second part of my response to your post about symptoms that you are concerned may be due to your antiphospholipid syndrome or a pineal cyst.

i present all of this info not to offer a diagnosis; i am not a dr and have no business making diagnoses. but my research does lead me to believe that it may be premature to conclude that the cause of your symptoms will be either APS or a pineal cyst, and i just wanted to bring up that idea on the (remote, i am assuming) chance that it might be relevant.

i know this is a long way for a short beer, so to speak. i hope you can get this resolved; i am so sorry you are having to suffer from such horrible symptoms. please keep us posted on how you are doing.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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kazza1967 replied to susiemargaret's response:
Many thanks for such an extensive reply Susie Margaret. The cyst is 2cm i.e. 20mm so it is very large based on what I've read. From what I've read too, these cysts show up quite often on MRI but they are usually less than half a cm in size.

I had an appointment yesterday and am now being referred to a neurologist so hopefully that will shed more light on what is going on. I also have an eye examination in a few weeks so, again, may add to the picture.

I definitely do have APS as I have had several positive blood tests for lupus antibody and several clots which fulfils the diagnostic criteria for APS. So I have symptoms but not sure what is causing them - APS or the cyst or, as you say, something else that is yet unknown.

Thanks again for your input Susie Margaret
 
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susiemargaret replied to kazza1967's response:
hello again, K --

i didn't doubt that you have APS; i was just concerned about where your symptoms are coming from.

i hope the neurologist visit is productive. i'm very concerned about the size of your pineal cyst, so i hope you will ask him/her whether treatment for it is warranted.

i send you caring thoughts and hope that you will keep us posted on how you are doing.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.


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