comfortzone Posted September 12, 2012 Report Share Posted September 12, 2012 Hi everyoneSoooo finally had the cognitive tests for my c/o memory issues - and I truly do have Mild Cognitive Impairment - Amnestic variety. So now what - anyone else have this symptom thoroughly checked out and documented?Confounding factors are medications for chronic pain and mild sleep apnea. Risk factors for bad events are obesity, borderline DM, labile b/p's and family history of parkinson's and maybe dementia in a 90 year old grandpa. Positive EDS'er hypermobile type.Some things read I am twice as likely to die as anyone else d/t this finding - other things say this is the halfway point to Alzheimers or Dementia without any way of knowing if this is 'stable' for awhile or happening rapidly over time. I am 55.I'm doing what I can - losing weight, reducing pain meds as is possible, walking for exercise etc.... but the beat goes on and I'm chasing the labile b/p's - couldn't tolerate the cpap after a 3 month trial a couple years ago.It's not fun to see that on your testing - so I have to just not think about it - sometimes that's easy as I can't think my way out of a paper bag some days ... WHY do I have this? That's what I want to know.So what will Mayo do about the results? Nothing? Would love to hear your inputs :-) Quote Link to comment Share on other sites More sharing options...
Millerla Posted September 12, 2012 Report Share Posted September 12, 2012 In my experience, Mayo doesn't do a lot with results. They did all sorts of tests for me when I went, and at the end of the week, said "well, your tilt test was positive." Then told me a couple ways to manage my POTS, and sent me on my way. No further testing on that was done. But, that was my experience. I was at the one in Rochester.I think we all have brain fog, some days worse than others. It's actually the reason I had to quite taking PSEO(college classes in highschool), even though I loved it because of the flexible times, I was just staring at the teacher not able to comprehend what they were saying at times. It's just all a part of the crazy world dysautonomia has us in. It is a bit odd that they did so much testing on the brain fog in particular.. Unless that was what you got referred for. I wouldn't worry too much about it for now though, just take care of yourself. Quote Link to comment Share on other sites More sharing options...
jangle Posted September 12, 2012 Report Share Posted September 12, 2012 Well sleep apnea is well known to cause mild cognitive impairment. Keep in mind sleep apnea can get worse, especially if the obesity is recent as gaining weight can exacerbate the condition. Since you've had untreated sleep apnea for years that can definitely be your go to culprit for correcting your MCI. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted September 13, 2012 Author Report Share Posted September 13, 2012 Hi and thanks for writing you two....I went to Mayo 2 years ago for the dysautonomia symptoms and the post op seemingly neuro symptoms after bilat knee replacments - they figured all of that post op stuff out pretty much - why I was weak etc... some kind of post op radiculopathy likely - for two years no one else would say that though - so kudos to Mayo. They did ignore my complaints about brain issues - but I got very insistent as it's much worse since my first complaint 4 years ago. Then they obliged me the testing. The sleep apnea was 'mild' and I've lost weight since the exam 2 years ago. The cpap tech said he didn't even know why I was on cpap as the pressures required to stop it were so low - but yet I did desat to 72% a couple of times. My eds doctor said to repeat the sleep study a couple weeks ago - so I guess I'll have Mayo do it again. Maybe toward the end of the year as these pounds are melting off rather well lately. My MRI of the brain from 2010 in another state showed all kinds of bright spots - but no one gets excited about that except the radiologist who says it can be from toxicity, MS, no oxygen to the brain etc... the true neuro's and other doc's called them, "UBO's" or unidentified bright objects and then they laugh. Great - it's not their brain, eh?I could give cpap a good ole college try again - but for someone claustrophobic - who despises wearing glasses, hats, coats and scarves - mittens etc... wearing that much 'gear' in order to sleep??? Was a joke ... I guess though I'll have to try again if there's a chance this will be helped by using it - though I'm not too positive I can overcome the cpap battle...Some studies say in 6 years I'll have Alzheimers - if things progress 10 to 15 percent each year or faster.... That's when you just have to live in the present moment for sure. Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted September 13, 2012 Report Share Posted September 13, 2012 Nowwhat, Have you been tested for antiphospholipid syndrome (also called Hughes syndrome)? It commonly causes the MRI changes you are describing as well as cognitive issues. It is an autoimmune clotting disorder, but can cause non- thrombotic manifestations as well such as severe migraines, trouble thinking, etc which are felt to be due to sludging of the blood, rather than clotting. The diagnosis is made by simple blood tests. Unfortunately, most physicians only know about the thrombotic manifestations. The treatment ranges from baby aspirin to warfarin/ heparin. Quote Link to comment Share on other sites More sharing options...
jangle Posted September 13, 2012 Report Share Posted September 13, 2012 Nowwhat, those studies you're referencing are generally citing pathology that's leading to alzheimers. I.E. if you have the same pathology, then MCI would indicate 6-7 years alzheimers. However, it's not known whether your MCI is stable as you mentioned. I don't understand why your doctors are being complacent with the UBOs on the MRI, it might be a good idea to try for further testing.If you're desaturating to 72%, even for brief periods that is something that your doctors are going to want to treat. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted September 14, 2012 Author Report Share Posted September 14, 2012 Thank you again for writing everyone. I went through my labs earlier today before reading the post about Hughes disorder - so will google it to see what labs are needed to rule that out - thanks!I think way back when I started w/ Mayo 2010 - they thought I had enough going on in 'real time' that needed addressing and figuring out - kinda a complicated patient history....so the cognitive thing and all tests that would speak to that issue - like my brain mri - were just shoved aside. I asked a couple of the first workup doctors about it and they said they agreed it was no big deal. Also some neck ultrasound I had had awhile before 2010 read too tortuous vessels to get a clear exam - that too was ignored and my eds doc said that should not be ignored. But now with the MCI dx being in 'real time' the next appt. that comes up will hopefully bear fruit in some more investigation. You guys are great - helping give me confidence once again as I try to venture on to feel better. They did treat the desats with just regular cpap orders - but as I said I'm sorrowfully failed that treatment. I looked up a dental group in my town that does mouth pieces like retainers - maybe I could see if that would be helpful - or I'll try cpap again.... I would like to think that maybe between decreasing pain medicines down to next to nothing and addressing the sleep again - maybe getting repeat brain mri - to see if there's yet more UBO's or anything concerning that would point to Alzheimers - I could get a game plan to help my functioning.It's just SO complicated sometimes - issues in nearly every single system and what is related to what is really confounding .... I appreciate your responses! Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 14, 2012 Report Share Posted September 14, 2012 My husband also has mild sleep apnea but the bigger concern is his tendency to desat into the low 80's. He also 'failed' c-pap but the next option he's supposed to try is the dental appliance and then some regular oxygen to see if he can tolerate that better. Since that would just be with a regular canula rather than the bigger masks, it might not be quite as miserable for you with your claustrophobia.Hope they get you some answers what with the new findings you have now. Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted September 15, 2012 Report Share Posted September 15, 2012 Nowwhat, He are the tests for APS/Hughes syndrome:Anticardiolipin antibody (IgM and IgG)Lupus anticoagulantBeta 2 glycoprotein (IgM and IgG)You do NOT have to have a high titer of the antibody levels for it to cause a lot of manifestations.To confirm the diagnosis, at least one of these tests should be abnormal on more than one occasion 12 weeks or so apartP.s. It has also been associated with labile hypertension, in fact that was in Prof Hughes original description of the disease in 1983 Quote Link to comment Share on other sites More sharing options...
jbenz1772 Posted September 19, 2012 Report Share Posted September 19, 2012 I've never had the testing, nor did I realize there were any for the "brain fog" issues. It seems to come and go with my flare ups, and those days I usually just call a bad brain day. It ranges from disorientation, stuttering, word finding issues, to um...staring into space trying to make sense of what is being said to me. Just started a new job, in a leadership position. Try explaining the stupid look on my face, or the frustration trying to find a word that I should know but won't come to me....just say "sorry, brain issues today"JenniferSmall Fiber Autonomic NeuropathyPOTS Quote Link to comment Share on other sites More sharing options...
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