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Medical Forum / Diseases and Disorders / Alzheimer's / October 2005EOAD
can anyone in here tell me how your loved one was diagnosed? All of the tests have been run on my husband. It has been almost 2 months now. Each of the 4 doctors & 3 ER doctors tells us "it looks like it may be early onset" but not even the neurologist gives us a diagnosis but "Cognitive Loss". My husband has been taken off work and driving until Dec 4th. We have to wait another 3 weeks before I can get him to another Neuro. The primary neuro has had a request for approval in to do a cognitive test for the last 4 weeks and it just keeps getting a run around. No other appointments are set up with him. The GP says there is nothing he can do until a Neuro says AD then he can try the drugs and see if they help. My husband and I are having a bad time of it. His moods can be harsh or crying confused. Sometimes he talks in circles so much that I can't even guess at what he means. All of the tests done come back normal but the brain has an enlarged ventricle and some tiny strokes in the frontal lobe. I guess I am just getting worn down. It has been 6 months he has been odd enough that our lives are truly disrupted. Now 2 months of doctors and nobody has even told us to give him aspirin. Is this normal? It feels to me as if none of them are making any effort to help us. This waiting has to be worse than the knowing LindaJean LindaJean, our family doctor gave my husband a prescription for Aricept before he had ever gone to a neurologist. Your doctor could too, if he wanted to. Gwen > can anyone in here tell me how your loved one was diagnosed? All of the > tests have been run on my husband. It has been almost 2 months now. Each [quoted text clipped - 25 lines] > > LindaJean all of these doctors and each ER has told us the same thing. That he must be diagnosed first LJ > LindaJean, our family doctor gave my husband a prescription for Aricept > before he had ever gone to a neurologist. > Your doctor could too, if he wanted to. > Gwen > My husband and I are having a bad time of it. His moods can be harsh or > crying confused. Sometimes he talks in circles so much that I can't even [quoted text clipped - 3 lines] > that our lives are truly disrupted. Now 2 months of doctors and nobody has > even told us to give him aspirin. Is this normal? i am not a doctor, but from all the symptoms you have reported it sure sounds like a multi-infarct or vascular dementia, or at least dementia due to stroke damage. it's time for you to take a day or two off and do exactly what someone else suggested: find out who actually makes the decision and then camp in their office. just tell them you are NOT leaving until someone makes that decision and OKs the next requited test, period. BE OBNOXIOUS if you have to be; the idea is that they will want to be rid of you, which means asking every half hour or so when you can see The Man (it's GOT to be a man; a woman, who knows what caregivers have to put up with since 90% are female, wouldn't create these kinds of delays. the important thing is that you have do it in person so that they can't just put you on infinite hold, hang up, or forward your call to some other clueless idiot. you may even have to get in their face. finally, your insurance company or the facility MUST have an ombudsman or patient advocate. if they don't, contact your state's office of the aging and ask for their help. it will be worth your while to take the time off work and just do it until you get your answer. don't take no for an answer, and RAISE HELL UNTIL THEY DEAL WITH THE PROBLEM. I agree with Dennis' post below. You are truly suffering with this awful situation. Somebody has got to help you and unless you get in their face and be a real PITA, they won't help you. But most of all I think you need a new doctor. Your doctor is absolutely the most uncaring rat I have ever heard of. He should have at least given your husband some Aricept or something right away.  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > >> My husband and I are having a bad time of it. His moods can be harsh or [quoted text clipped - 33 lines] > you get your answer. don't take no for an answer, and RAISE HELL > UNTIL THEY DEAL WITH THE PROBLEM. He and the Neuro said he can't have any meds until the cognitive test is done but the shared risk company won't give approval. I just thought there might be some new ideas for me besides crying and making phone calls ;-) LindaJean > I agree with Dennis' post below. You are truly suffering with this awful > situation. Somebody has got to help you and unless you get in their face [quoted text clipped - 3 lines] > something right away. > > On Sat, 15 Oct 2005 16:23:29 GMT in alt.support.alzheimers, "LJ" > He and the Neuro said he can't have any meds until the cognitive test is > done but the shared risk company won't give approval. I just thought there > might be some new ideas for me besides crying and making phone calls ;-) > > LindaJean Linda they gave my MIL Aricept right away. I just find it unconscionable that these doctors are not working with you knowing what you are going through. Is there any way you can get around this shared risk company approval process? Can you go somewhere else? SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >> I agree with Dennis' post below. You are truly suffering with this >> awful [quoted text clipped - 7 lines] >> something right away. >> > On Sat, 15 Oct 2005 16:23:29 GMT in alt.support.alzheimers, "LJ" I took him to the ER at UCLA and they gave us a referral to a Neuro up there. I take him in on the 4th. I decided it was worth it to just pay for the visit if Cigna won't allow it. I don't know what else to do. John's moods are keeping me on edge and it breaks my heart to see him get so "vague" all of a sudden. I have just got to get somebody to DO something. I have asked for but not yet gotten copies of denial for cognitive testing and the denial for us to see a Neuro out of the "network". I am battling the risk group and the local doctors and my husband at the same time. What I need is a clone hahaha Linda Jean > >> I agree with Dennis' post below. You are truly suffering with this > >> awful [quoted text clipped - 7 lines] > >> something right away. > >> > On Sat, 15 Oct 2005 16:23:29 GMT in alt.support.alzheimers, "LJ" Linda, I just remembered a part of the appeals process I've never had to pursue (thankfully) but any employer based insurance can be appealed back to the Benefits Committee of the employer. There is usually a specific process for this and I would send in my correspondence by registered mail (to prove receipt) but I think this might be a good time for you to begin this process. An benefits attorney could confirm liability (and you may want to get one involved), but I've read of several employers and insurance companies have been sued for denial of services when the patient couldn't get resolution. In some cases, people worsened or died of physical disorders. In other cases, people committed suicide because they didn't have the mental wherewithal to fight the system for the care they needed. Which is a pretty damning statement on our healthcare system, when you think about it. I think the hardest thing for most civil people to get used to is that sometimes you get nowhere by being civil. You're probably going to be forced into being a rude PIA until you get what you need. The gold pot at the end of the rainbow is that once the diagnosis is established, the case goes into "maintenance mode" and you probably will only have to be a PIA once or twice a year during a verification process. Karen > Linda they gave my MIL Aricept right away. I just find it unconscionable > that these doctors are not working with you knowing what you are going > through. Is there any way you can get around this shared risk company > approval process? Can you go somewhere else? I have to be able to show the denial. That is why I keep demanding they put it in writing. The process seems to be fighting us tooth and nail <f>. I have a serious problem dealing with strangers and being forceful. Unfortunately for my husband.....I am all he has to fight for him. Thank you, I am trying my best to fight back for us Linda Jean > Linda, I just remembered a part of the appeals process I've never had to > pursue (thankfully) but any employer based insurance can be appealed back to [quoted text clipped - 19 lines] > > Karen > I have to be able to show the denial. That is why I keep demanding they put > it in writing. The process seems to be fighting us tooth and nail <f>. I > have a serious problem dealing with strangers and being forceful. I am not a lawyer, and what follows is not legal advice, but simple practical steps to take. One thing I have learned from dealing with either inept or dishonest bureacrats is to document everything, and to do as much business in writing as possible. Haver you been keeping notes, a log, or a journal? As crazy as life gets for caregivers, I understand why many folks don't, but the time is well spent when you need to accurately refer to what you have requested, and when. Following up all verbal or in-person requests with a letter setting forth your understanding of what you were told gets their attention, because they'll then know that you are documenting every encounter. It's often much easier to demand things in writing, too, and it protects your legal rights. In court, such a letter is called a "demand letter". So write to ALL the parties involved, including this mysterious "risk management" company, and demand that they make a decision by a date 7 days hence. Either hand deliver the letter and get a receipt for it, or send it certified mail with a return receipt requested, and save the receipt. Your other alternative, of course, is to pay a personal injury attorney to write such a demand letter. You'd be surprised how fast they'll get moving when they get a letter from "your" lawyer. And what Evelyn said: It's time for a new doctor, if the doc won't push to get this done for the patient's immediate benefit. Good points thank you everyone. I have been kinda upset as you can imagine and I needed advice from people that have been thru this Linda Jean > I am not a lawyer, and what follows is not legal advice, but > simple practical steps to take. One thing I have learned from [quoted text clipped - 26 lines] > And what Evelyn said: It's time for a new doctor, if the doc > won't push to get this done for the patient's immediate benefit. >I agree with Dennis' post below. You are truly suffering with this awful >situation. Somebody has got to help you and unless you get in their face >and be a real PITA, they won't help you. But most of all I think you need >a new doctor. Your doctor is absolutely the most uncaring rat I have ever >heard of. He should have at least given your husband some Aricept or >something right away. My diagnosis was approximately 1 year after I reported memory loss. Until then I was being treated for depression. Frustrating as it was, I sympathise with the doctors who have to make the decisions. I hated Aricept: it made me so nauseaus(sP). Over here, doctors can't prescribe Aricept over here - must come from a neuro. -- 2 + 2 = 5 for sufficiently large values of 2. Where are you? We are in Southern California Linda Jean > My diagnosis was approximately 1 year after I reported memory loss. Until then I > was being treated for depression. Frustrating as it was, I sympathise with the [quoted text clipped - 5 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. >Where are you? We are in Southern California Australia -- 2 + 2 = 5 for sufficiently large values of 2. I sure have tried that. It isn't easy to camp out with him but we did for 5 hours. It did no good. I am working with the insurance company but I need to have each turn down in writing....that is proving to be hard to get. Thanks > i am not a doctor, but from all the symptoms you have reported it > sure sounds like a multi-infarct or vascular dementia, or at [quoted text clipped - 21 lines] > you get your answer. don't take no for an answer, and RAISE HELL > UNTIL THEY DEAL WITH THE PROBLEM. LJ My heart hurts for you. There is, at this time, no test definitive test for AD. It is a matter of elimination. I do not understand why the Dr cannot give some meds for relief of the symptoms your husband is suffering. Could you get him to the ER when he is in this state?... This poor fellow is probably so frightened---& my guess would be, so are you. I started out a little frightened of AD now I am frightened of everything. I have had him in 3 different ERs. The last one said they couldn't do anything as there was no emergency :::sigh::: I keep pointing out that one of these days he is going to have an episode and actually get away from me but they tell me just to call the cops if he is out of his head about something. This is ludicrous! Linda Jean > LJ > My heart hurts for you. There is, at this time, no test definitive test [quoted text clipped - 4 lines] > Could you get him to the ER when he is in this state?... This poor > fellow is probably so frightened---& my guess would be, so are you. Linda, I remember one of the insurance denial cases I read about was with Kaiser in CA. Have you asked your state representative if they can point you to some assistance in this? Perhaps to the State Board of Insurance? Karen > I started out a little frightened of AD now I am frightened of everything. I > have had him in 3 different ERs. The last one said they couldn't do anything [quoted text clipped - 4 lines] > > Linda Jean It may come to that but first step is to have the turn down in writing....I am still trying to get that. Linda Jean > Linda, I remember one of the insurance denial cases I read about was with > Kaiser in CA. Have you asked your state representative if they can point > you to some assistance in this? Perhaps to the State Board of Insurance? > > Karen > It may come to that but first step is to have the turn down in > writing....I am still trying to get that. [quoted text clipped - 6 lines] >> >> Karen LindaJean, I've been reading about your dilemma from Day One, and from what you say, what follows is nothing but a long shot. There was a fly-by poster in this group a year or so ago who had a valuable warning: her "young" (50-ish) husband was some kind of professor (i.e., an intelligent guy) who had been put on (anti-cholesterol) statins for a year or two, which ruined his cognition for at least a few years, maybe more, maybe indefinitely. I wish I remembered more about her few posts. (Caregiver dementia kicking in, here. Sorry.) They were heart-wrenching posts. From what you have said, I don't suppose there's any chance this could be the problem with your husband, but if he's been taking cholesterol lowering statins, it may well be worth mentioning to the docs. I know what you're feeling. It took a Biblical host of doctors 3-and-one- half years to diagnose my mother (in her 70's) with a specific non-Alz dementia after we family members began being PITAs. It was the absolute worst 3-1/2 yrs. of my life. (And I'd had some doozies.) Good news is, once we did get a fairly accurate diagnosis, the meds have mostly done a power of good; not just for my mother, but for all of us. Best, best wishes to you, LindaJean. I don't post here often, but I feel safe in saying that you should never hesitate to bring your frustrations to this group. It's a very supportive, caring bunch. Take what helps you, and leave the rest, if it's too upsetting. You can tell, after a while, who are the helpful posters (even if you don't care for their particular delivery) and who are not. Meanwhile, keep using the group to get help for yourself. That's only an infintessimally close second to getting help for your husband -- really. Deborah The doctors all know he takes the stuff. I will be more pushy about the subject with the new Neuro thanks. I had read it could cause some memory loss. I don't know how much tho. You are all a God sent. Just being able to talk about all this and hear different views is a help. Linda Jean > LindaJean, I've been reading about your dilemma from Day One, and from > what you say, what follows is nothing but a long shot. There was a fly-by [quoted text clipped - 26 lines] > > Deborah > The doctors all know he takes the stuff. I will be more pushy about the > subject with the new Neuro thanks. I had read it could cause some memory > loss. I don't know how much tho. If your husband needs to lower his cholesterol, he probably should be using some other therapy than statins. I just did a google on "statins memory loss" and the results were quite disturbing. You should try it. The current book on the subject is Lipitor: Thief of Memory, Statin Drugs and the Misguided War on Cholesterol (Paperback) by Duane Graveline, MD, MPH Paperback: 162 pages Publisher: Infinity Publishing (January 28, 2004) ISBN: 0741418819 Dr. Duane Graveline, former astronaut, aerospace medical research scientist, flight surgeon, and family doctor, given Lipitor(r) to lower his cholesterol, loses his short-term memory for several hours. He discontinues the drug, but a year later at his annual NASA physical is urged to resume it at half the dose. Six weeks later he loses both short and retrograde memories for half a day and is diagnosed in the ER with transient global amnesia (TGA). Appalled by the medical community's ignorance of the cognitive side effects of the statin drugs, he begins searching for answers to his traumatic experience. Lipitor(r), Thief of Memory, Statin Drugs and the Misguided War On Cholesterol is the "scary, appealingly written" account of his findings. >> The doctors all know he takes the stuff. I will be more pushy about the >> subject with the new Neuro thanks. I had read it could cause some memory [quoted text clipped - 5 lines] >I just did a google on "statins memory loss" and the results were >quite disturbing. You should try it. So, should I worry? Which should I give up the statins or the a.d.? :-) -- 2 + 2 = 5 for sufficiently large values of 2. >>> The doctors all know he takes the stuff. I will be more pushy about the >>> subject with the new Neuro thanks. I had read it could cause some memory [quoted text clipped - 9 lines] > > :-) Give it up for a while and see if your memory improves. If not, then you are not among the part of the population who experiences this symptom. I gave up statins myself, but for another reason. Severe muscle weakness and muscle pain. I have never felt better. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > -- > 2 + 2 = 5 for sufficiently large values of 2. > I just did a google on "statins memory loss" and the results were > quite disturbing. You should try it. [quoted text clipped - 21 lines] > Drugs and the Misguided War On Cholesterol is the "scary, > appealingly written" account of his findings. My husband has been taking omega-3 supplements for years for cholesterol. It definitely helps. I told my brother about it and he told me it really helped bring down his cholesterol count too. I didn't know about the connection between statins and memory loss until this newsgroup. Thanks for the info. I always look for natural remedies to help whenever possible....June >> I just did a google on "statins memory loss" and the results were >> quite disturbing. You should try it. [quoted text clipped - 28 lines] > for the info. I always look for natural remedies to help whenever > possible....June The supplement "Pantethine" made by Jarrow Formulas in the 300 mg size is pretty good for bringing down cholesterol too. I can't take statins myself either. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') My hubby's cardiologist recommended Benecol (full strength, not Benecol light) 1 Tsp/3 times a day when we expressed concerns about the potential side effects of statins. It brought his cholesterol down from 385 to 180 and it's stayed there. The amazing thing is that it actually tastes good. How often does it happen that something good for you tastes good? :-) It seems a bit pricey for a butter substitute, but compared to the co-pay on prescription drugs per month (or the cost of a stroke or heart attack) it seems downright reasonable. Karen > The supplement "Pantethine" made by Jarrow Formulas in the 300 mg size is > pretty good for bringing down cholesterol too. I can't take statins myself > either. thanks :-) LJ > > The doctors all know he takes the stuff. I will be more pushy about the > > subject with the new Neuro thanks. I had read it could cause some memory [quoted text clipped - 28 lines] > Drugs and the Misguided War On Cholesterol is the "scary, > appealingly written" account of his findings. LJ Perhaps the ER was trying to tell you something when callng the police was suggested. If the police see your husband acting abnormally and you in anguish the police may want to call an ambulance. Let them Don't say no to any help or suggestion. Try to get him admitted. Good luck. My health plan says you must report the emergency ASAP {24 hrs) to cover costs ambulance & ER. If he is kept in hospital .that hopefully should get things going. oh! I didn't think of that. Thank you LJ > LJ > Perhaps the ER was trying to tell you something when callng the police [quoted text clipped - 7 lines] > costs ambulance & ER. If he is kept in hospital .that hopefully > should get things going. > LJ > Perhaps the ER was trying to tell you something when callng the police [quoted text clipped - 7 lines] > costs ambulance & ER. If he is kept in hospital .that hopefully > should get things going. What they are hinting at is if it seems your husband is a danger to himself or others, and the police think it is rises to the level where medical intervention is in order, he must be evaluated to see whether commitment to a mental facility is in order. Now this seems drastic, but it's a way to force the insurance company's hand by taking the decision away from them. The needs of public safety now say the diagnostic tests are necessary. The following should not be considered legal advice. It is simply information you can take or leave as you choose. Remember, the laws in your state may vary from what is written and you should research whether anything below is applicable in your specific case. There is a 'bad faith in insurance practices' law that others have hinted at. In Massachusetts, an insurance company who does not fulfill the terms of their contract (sticking to deadlines for determining things, etc.) can be assessed treble damages (having an award tripled. Insurance companies hate it) for their failure to deal in good faith. Not sure whether this is true in CA, but I would bet it is as CA is often the first in the nation to create these kinds of laws (most liberal legislature). That demand letter Dennis mentioned is key. You need to drag out your policy and a magnifying glass. Find all the time limits by when things in the approval process must happen (won't be easy. you may need to just list them and create a timeline in whatever way makes sense to you.). *Not getting a decision doesn't mean the power is all in their hands. The avoidance of the decision to prevent certain deadlines from kicking in is also bad faith.* Then write the letter and send it certified, Return Receipt. In your demand letter, list as specifically as possible dates of appointments and phone calls, along with their purpose, to whom you spoke, etc. If you don't have that info, do your best, and from now on log the date, time and person to whom you spoke for every phone call (yes, even every time you are transferred to another dept.) If there is no time limit that specifically applies, you need to use the term reasonable in a statement - something, like 'waiting x weeks for a diagnostic test before treatment can even be started is so far beyond reasonable for a person who acts in a menacing manner that it is unconscionable.' Give them a reasonable time to answer (5 business days?) from receipt of your letter to issue a decision and notify you immediately. You should also say you will be forced to take legal action if they don't comply. A cc to his doctors might not be a bad idea. It might get them thinking malpractice for failure to push for timely treatment. Adelle (an atty in her incarnation before kids, but who has not practiced law in 15 years and is not currently registered to practice law) >> LJ >> Perhaps the ER was trying to tell you something when callng the police [quoted text clipped - 57 lines] > (an atty in her incarnation before kids, but who has not practiced law in > 15 years and is not currently registered to practice law) Hi Adelle, You may not any longer be registered, but so many times you have offered helpful advice here, and shed light on many complicated situations. Your knowledge is way above the average "Joe" or "Jill" on these matters. In my opinion what they are doing to that couple is absolutely shameful, and all of them are guilty of causing great pain. I don't know if she has any legal recourse either, but the whole scenario is so shockingly negligent that I think she ought to call an attorney about it and find out if there is. At the very least they should expedite the process of coming up with a diagnosis, or prescribe some anti-depressants to keep the poor man from going through so much mental misery over it all. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Great advice! One suggestion -- if you send something by "Registered Mail, Return Receipt Requested" spring for the extra $0.40 or so and get the internet trackable option. I've had the little green cards go missing and not come back to me. It doesn't happen often but when it happened to me, the USPS was not a tremendous help. Karen > What they are hinting at is if it seems your husband is a danger to himself > or others, and the police think it is rises to the level where medical [quoted text clipped - 20 lines] > approval process must happen (won't be easy. you may need to just list them > and create a timeline in whatever way makes sense to you.). *Not getting a > decision doesn't mean the power is all in their hands. The avoidance of the > decision to prevent certain deadlines from kicking in is also bad faith.* [quoted text clipped - 19 lines] > (an atty in her incarnation before kids, but who has not practiced law in 15 > years and is not currently registered to practice law) |
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