Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 ??? First welcome to a place no one wants to be but keeps most of us sane. You are really working with extremely early onset. Let us know what meds and how they came to the decision it is LBD. Usually it is a hard diagnosis to get from the MED profession. Are there meds they are suggesting? I recently hear Aricept is not doing what they thought it would. You have a really long road ahead if this is real. I would wonder how they decided it was LBD. There is a spouse group. We are not chasing you away but giving you even more choices. Make sure you find the legal aspects that need to be addressed earlier than usual. THE 36 HOUR DAY is a good resource for caregivers. (Book) Donna R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 jaymie oh my goodness, my heart goes out to you, with LBD being a possible diagnosis. i truly hope that the doctors can find something else wrong. lbd is a very terrible and heartwrenching disease. my dad was diagnosed in may but has had it for probably 5-7 years. my dad has deterioted very quickly from being able to dothe lbd shuffle walk to now needing a walker and barely walking,soon he will need a wheelchair, my prayers are with you jaymie, where do you live, i am in pensacola florida, we have people from all over the world here, all of us are glad to be here for you, anytime, and you will find since we are all over the world there is rarely a time that someone isnt online, and you can correspond with them, take care and good luck . sharon m a smile a day keeps the meanies away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 jaymie sounds like you are on the right road, but you are right, in my opinion i wouldnt want to wait 9-12 months before starting medicines for dementia. my dad he is 70, recently started exelon and one of the great things it did for him was to help him find his words a little easier. doesnt mean all the time, but much more often than before. my dad has a helicopter pilot for 23 years so his intelligence and speaking capabilites were great. so this is a terrible issue for him. he will add namenda here shortly to help as well, but with lbd patients you can only add/subtract one medication at a time, because you never know how they will react to them, again where do you live, and is there a university hosptial within driving distance for you. i personally go to vanderbilt university medical center in nashville where i lived before moving to florida where dad lives. and i continue to drive to nashville for my own medical care. and i hope to soon convince dady to move up there, but he isnt ready yet. but i would suggest you take him to one. they are very good to try to diagnos an treat and are so thorouogh. after all these are residents (doctors in training under a supervising physician ) and love challenges. good luck sharon m florida a smile a day keeps the meanies away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 In 2001, my husband started experiencing unusual symptoms with his eyes and his legs. He was subsequently diagnosed with Optical Neuritis and myclonic jerks. At first the neurologist was convinced that this was MS, we received several opinions on this and MS was the resounding thought. However, his MRIs never confirmed MS and the neurologist would never issue an official diagnosis and began MS meds. My husband has been taking Clonopin and Depakote to control the jerks. He has recently also started on Levapro for anxiety. About mid-2002, my husband started noticing that he was having difficulty voicing his thoughts, he just could not come up with the right words. Since then, other issues have surfaced: he doesn't work well in a busy environment, he cannot remember numbers, etc. The neurologists ran the test for Alzhimer's, that was negative. At this point, the neurologist said that he has abosolutly no idea what was wrong. So, he sent us to a psychologist to perform cognative testing. The result was LBD, which our neurologist confirmed was in line with what he was thinking, some sort of dementia (hence, the Alzheimer test). He will not start any meds for this until there is a firm diagnosis, which he does not want to give until we run the congative testing again in 9-12 months. I'm concerned that by that time, we may be getting too far down the road. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Jaymie- I am just speechless. Welcome to the caregivers group. May I ask you a few questions?? What symptoms is your husband having? What led you to believe something was wrong/different? Is he taking any medications, and if so, what are they? Does he have a neurologist and/or a neuropsychologist? I will start with these hoping this isn't too many questions from the git-go. Um, my dad was 58 yrs old when diagnosed...and even 'that' was young. I shall say some extra prayers for you and your husband. Hugs to you- Sandie Des Moines, IA -- " jaymiesharp " wrote: I am 28 years old, my husband was recently tentatively diagnosied with LBD. They are hesitant to make a firm diagnosis due to his age, which is 26. I have spent the last few days trying to research this disease. I have not been able to discover anything about early onset and I am wondering if anyone else out there has faced t his at such a young age and what I should expect. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Jaymiesharp Sally here in the UK First of all, where are you and which doctor/hospital has suggested the possibility of LBD so early? I am astounded by your post. In my 2 years here on the site I have never heard of onset so early. My heart goes out to you. I do know that Parkinson's and Alzheimer's does afflict young people so we shouldn't dismiss the possibility of LBD. Could you give us a little more info? What symptoms set you on this path? Does hubby take any medication? I will get straight on to my contact here in the UK - Prof. Ian Mc is the leading expert in LBD. I'll quiz him for you. Thanks for being here. We welcome you with open arms and hope that our love and support will be a blessing to you both. We will help all we can. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Jaymie, My heart goes out to you and your husband. Do you have family and friends around to support you both? I am shocked by how young you both are. Keep at those doctors until they can give you a firm dx. Are you able to see other nuro's for second, third opinions? Sending you both strength. Courage Re: New Diagnosis >In 2001, my husband started experiencing unusual symptoms with his >eyes and his legs. He was subsequently diagnosed with Optical >Neuritis and myclonic jerks. At first the neurologist was convinced >that this was MS, we received several opinions on this and MS was the >resounding thought. However, his MRIs never confirmed MS and the >neurologist would never issue an official diagnosis and began MS >meds. My husband has been taking Clonopin and Depakote to control >the jerks. He has recently also started on Levapro for anxiety. >About mid-2002, my husband started noticing that he was having >difficulty voicing his thoughts, he just could not come up with the >right words. Since then, other issues have surfaced: he doesn't >work well in a busy environment, he cannot remember numbers, etc. >The neurologists ran the test for Alzhimer's, that was negative. At >this point, the neurologist said that he has abosolutly no idea what >was wrong. So, he sent us to a psychologist to perform cognative >testing. The result was LBD, which our neurologist confirmed was in >line with what he was thinking, some sort of dementia (hence, the >Alzheimer test). He will not start any meds for this until there is >a firm diagnosis, which he does not want to give until we run the >congative testing again in 9-12 months. I'm concerned that by that >time, we may be getting too far down the road. > > > > >Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi again Jaymie, I took the liberty of forwarding your husband's test information to Russ who is a Researcher at s Hopkins and is a member or our group. Please see his reply below. Hope this gives you some hope - it may not be LBD (?) or at the very least that your husband is getting the correct testing done. Hang in there you two. For the rest of the group, Russ is moving to Huston and is healing from a leg injury (in a cast that makes his leg look like it belongs to Robo Cop - Gosh, I didn't even know about his injury but it was probably mentioned and my mind has not been with me for the last month and 1/2!). Courage New Diagnosis >I am 28 years old, my husband was recently tentatively diagnosied >with LBD. They are hesitant to make a firm diagnosis due to his age, >which is 26. I have spent the last few days trying to research this >disease. I have not been able to discover anything about early onset >and I am wondering if anyone else out there has faced t his at such a >young age and what I should expect. > > > > >Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
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