Hello Mary, (phmodel)

I was wondering if you could tell me what the Boeve guidelines are? Or maybe Jeanne can too?? I am an LBD patient and still pretty newly diagnosed....It's one of those days were I am wondering if I need to do something more than I am with my local neurologist (who dx me after many years of doctors who missed this including two at Johns Hopkins)......I am on 10 mg of aricept and we will be adding namenda in about three weeks......The aricept has helped a lot but I still feel like I am slipping.....the decline has been especially marked in the last year and 1/2 or so....Maybe I need to be more patient....my onset was very gradual....Thank you all!

Tonya

Tonya,

You can find Dr. Boeve's "Continuum" paper from 2004 here:

http://www.lbda.org/feature/1347&cfid=2 ... bodies.htm
(world's longest links are on lbda.org )

I suggest you download the paper to your PC so that you can consult it often. And, the link periodically changes on lbda.org when they "improve" their website.

Dr. Boeve's guidelines aren't based upon stages. But he's an expert at treating DLB.

Robin

Tonya, I just wanted to mention one thing that Dr. Boeve said this week. There is no evidence that the rate of progression accelerates. People who are on a path of slow decline tend to continue to decline slowly, as far as they know now.

This can be a little tricky to judge, though. Without knowing anything else about the situation it might appear that Coy was heading downward at a whirlwind speed -- he went from no symptoms to a large range of serious symptoms overnight. But the background is that he'd had RBD for decades, and this is indicative of very slow progression. Why did he dive into to deep end of symptoms when Lewy finally moved in? Who knows? Maybe there is something to the theory about possible infammation of the brain. In any case, once the first dreadful symptoms were under control the disease is back to very, very slow progression.

Let us hope that your decline continues to be very gradual, and that you can even slow it further, with treatment. Good luck!

Thank you both!! Yes I would say I have had a slow decline but it has sped up the last 3 yrs - possibly due to stress - hopefully the body can heal some of that.....I am going to fight this thing all the ways I can learn how.......Thanks so much!
Tonya

Tonya,

As you know, I Dr. Boeve's patient also. I will be going back up to see him in a month or so. I will pass on the info that I can.

I just had a HUGE stress removed from my life..I am hoping this is going to make a difference.

Thanks Everyone and good luck Craig with your appt and I am hoping your life will be easier.....I look forward to hearing more about Dr. Boeve as I am considering seeing him but I am a long distance away and the whole Johns Hopkins experience, besides wiping out all savings and then some, was bitterly disappointing and terribly stressful and I don't want to go through anything like that again, as I honestly believe it made me worse....Thank you all for sharing all the positives...I think Craig said it - that we need that so desperately to keep fighting this illness...
Thank you all....
Tonya

Tonya - if I could have transported my dad to see a neurologist, it would have been at Johns Hopkins. Reading your posts makes me glad that I didn't subject him to a day of travel, waiting for drs., etc. to have him seen there! I wonder if there are others who had poor experiences at Hopkins??? I'm sorry you had a bad experience with your medical treatment, on top of all the other things you are having to adjust to. Lynn

Thanks Lynn...I was terribly disappointed by JH - not to discourage others who might have good experiences there, but mine were not...I saw a general neurologist who actually was young and had an inkling of LBD or something like it, but decided to refer me to a "cognitive" specialist - I waited 4 months....her resume was impressive - her performance was not....I was sorely disappointed...I was dx with depression only to explain all my symptoms???....and my local psychologist, whom I saw every week, said I was not depressed to the extent of explaining my cognitive problems......I had this dx enough locally (especially as a female I might add) so it was especially disappointing to get it after blowing all our savings and then some....I'm sure some of the docs at JH would not have treated me this way, so I never want to discourage anyone from the top neurological hospital in the country....but that was just my experience...in the end a local doc (who originally was not local, but came here from Buffalo, NY) dx me in February with LBD....I never want to discourage anyone - anyone who has been through this has probably been through a large number of doctors and specialities as I have - I would imagine there was just as good a chance at getting a top notch dx at JH as not...and after all doctors are only human.....


Tonya

Tonya, do you live in MD? That's where my dad lived and he was on the Eastern Shore which is known for having few specialists and few PCPs for that matter. If you are in MD, what about U of MD or some of the big hospitals in DC? Anyone around there that might be helpful to you?
Lynn

Tonya, I want to share two reactions to your post.

First I want to share my anger at your diagnosis at JH. Of course you were depressed. Who wouldn't be with all the stresses in your life? But to conclude that all the symptoms are the result of depression instead of the other way around makes me mad, mad, mad. A few months after Coy was diagnosed I had a range of annoying-to-serious symptoms, which my PCP assured me were due to "anxiety." She prescribed anti-anxiety meds, one after the other when each one didn't work. I even went in with a written list of my symptoms which she wouldn't let me read, patting my hand and assuring me she'd treat the anxiety. That lasted until I presented myself at an emergency room and found out I had classic symptoms of out-of-control diabetes, easily confirmed by a simple blood test.

When the doctor who was on hospital rounds from my clinic that week visited me he told me this was a common misdiagnosis. When I asked if the same mistake would have been made with a male patient he said it could be but that women were x times more likely to me misdiagnosed with pyschological problems than were men. I don't remember now what x was, but it made my blood boil at the time. He said I should have been more assertive in getting the doctor to listen to all my symptoms. I am a reasonably assertive person (believe me), but it is hard to perform at your best when you've lost 50 pounds in 2 months and can barely put one foot in front of the other and your vision is blurry. Well, in the future, he told me, I should always make sure I had an advocate with me if I didn't feel up to handling the situation myself. Nice how they made the mistake but it turned out to be my fault, huh? Sorry to ramble about my experience, but when I read yours I get all worked up again. My cousin's daughter was also given a "depression" diagnosis when she clearly had diabetes. That it is a "common" medical mistake makes me all the madder. Shouldn't schools be teaching doctors to be cautious about this?

Have you had any contact with the dr at JH since your current dx?

The other topic is based on your spending all your savings. I don't recall if you have mentioned anything about this. Have you consulted an elder law attorney? (Even though you are not elderly, that may be where the expertise about this kind of thing would be.) Have you considered starting the process for applying for MA? I think you said that you work parttime, which is fabulous -- hang on to that as long as you can -- but have you started to look into disability claims? Especially at your age for your sake and your husband's it is important to do the best you can to protect your economic future.

Hang in there!
Jeanne

what is MA in this context?

I got the anxiety diagnosis too…for a long time….lazy doctors….
I too, have lost everything…in the quest for the answer...in the last few days I lost the remaining of everything…after everything…

After spending ten days at Mayo….before seeing Dr. Boeve….the other Neuros were sending me home….with the same diagnosis's that I arrived there with….

I wouldn't leave…..

so….a trip to Mayo….can be just as frustrating and unfruitful….actually harmful and hurtful as a trip to JH or the local lazy quack….a lazy doctor is not limited to any one place…they are everywhere…

even at Mayo….the first neuro wanted to only hear about the top three symptoms…..(how would I pick three out of over a hundred?) (how am I qualified to do that? even I know better than that, or maybe I am the only one that know better than that) he didn't have a year to go through all of them….lazy quack….lazy Mayo quack…

Dr. Boeve let me share with him everything that was on my mind…the whole list….multiple lists…multiple times….I sure hope he isn't a hallucination…that would be my luck….

I am tired….I could talk for a year about this….this system is broke….this needs to be fixed…limbo is an bad unnecesary place in today's world….

I have been looked at as lazy….crazy…and who know what….everything except sick….until now….now I am told I am past sick….and the road to get here destroyed the rest of me….I ran out of money and everything else ….less than a month….after diagnosis….I have arrived…

I know it is a common story…how can we prevent this from happening to those who come after?

MA = medical assistance

Define MA in a broad context?

BC, forgive my intrusion here but I have some important advice for you: Seek the services of a Medical Social Worker. He/she will be able to steer you into assistance programs that are suitable for your situation. Your PCP or other physician can write an order and refer you.

I agree, Pat. Or in some states (like Wisconsin), you don't need a physician referral. You can just contact the county office that manages assistance programs. Start with an office such as social services and you will be directed to the right place.

Julianne