Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Dear Claude; I am sorry you are having so many problems. I have a lot of the same problems you do and on two occasions I have not been able to speak for hours even though I could still understand what was being said and I could answer with writing. I had to leave my job because after about three hours of multitasking I would start stuttering, I would feel disconnected from my body and would have a hard time driving myself home. I still have problems with speech when I get tired but now that I am not multi-tasking things are a lot better. As far as the neuropsych tests, they are pretty boring but can be very helpful in determining which areas of the brain are affected by the NS. You will go through different mental exercises such as repeating what is said to you ie stories, numbers, lists and so on. There will be puzzles where you have to make the same pattern with blocks as you see in a photo. They will also probably do a very long " personality " test where you have to answer 500 questions. I go this Thursday for my results...this is my second go around - woo hoo. I personally do not have the diagnosis but it is suggested that I have NS and am sorry that you do. The owners and moderators of this site are a wealth of knowledge and all of the members have such great insight into different problems and issues so feel free to ask any question...no matter what. Take care. Terri G. > > I have been having trouble with my memory, been getting worse as time > goes on, and also problems with processing information (decision > making, etc0 that is affecting my job. I've been diagnosed since the > fall of '98 with neurosarc. Finally my neurologist suggested some > neuropsych tests that I will have on May 4th. I have been in my job > for 24 years but am finally having some real problems in accomplishing > my goals at work and worried about the consequences. Can anyone tell > me what I might expect from this type of test and what my next step > should be after? I also have numbness in my lower left leg that is > getting worse, especially the more I walk the more numb it becomes and > after a time causes me to limp. I also have balance problems which > cause me to stumble at least a few times everyday. Sometimes when I am > asked a question I can't even speak and feel like a deer in headlights > because my mind can't process the question right away, I guess I must > look crazy with just a blank stare when that happens. Can anyone tell > me if they have these problems? Thanks and I hope that everyone has a > better day today. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Hi Claude, My heart goes out to you as I know how difficult these symptoms are to deal with. Carrying on life as normal seems like a dream, let alone answer a question that would have been easy to answer years back. Know that you aren't alone, many of us suffering from NS have the exact same challenges. Also know that you do have legal rights - especially having been at your job for 24 years. In the beginning of this, I was so afraid I was going to lose my job. However, thankfully, my workplace is very legally compliant and explained my options in very much detail. I do know that it differentiates based on state regulations, so you might want to see how your state handles disabilities. In my case, I am eligible for FMLA (Family medical leave act), which secures my job while I go through testing and treatment. I am also lucky to have short term disability, which will help cover some of my salary. Understand though, that the two serve separate purposes. As I understanad it, you cannot have STD withough being on FMLA. Check with your HR department. They should provide you with the appropriate FMLA paperwork, which you will then need to submit to your doctor. Primary care physicians seem reluctant to complete this paperwork - but my pulmonary doctor who is familiar with and diagnosed the sarcoid did. Feel free to email me with any questions. kimpellett@.... My thoughts and prayers are with you. Kim > > > > I have been having trouble with my memory, been getting worse as time > > goes on, and also problems with processing information (decision > > making, etc0 that is affecting my job. I've been diagnosed since the > > fall of '98 with neurosarc. Finally my neurologist suggested some > > neuropsych tests that I will have on May 4th. I have been in my job > > for 24 years but am finally having some real problems in accomplishing > > my goals at work and worried about the consequences. Can anyone tell > > me what I might expect from this type of test and what my next step > > should be after? I also have numbness in my lower left leg that is > > getting worse, especially the more I walk the more numb it becomes and > > after a time causes me to limp. I also have balance problems which > > cause me to stumble at least a few times everyday. Sometimes when I am > > asked a question I can't even speak and feel like a deer in headlights > > because my mind can't process the question right away, I guess I must > > look crazy with just a blank stare when that happens. Can anyone tell > > me if they have these problems? Thanks and I hope that everyone has a > > better day today. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi Claude - I'm relatively new to the group, but I just want to tell you that when I read your email this morning, I cried. I know that I, too, am headed in the same health direction, and I'm scared as "h - e - double hockeysticks," as my son would say, so I can't even imagine what you're going through! I'm praying for you. Hugs, JeannieClaude Manzanares wrote: I have been having trouble with my memory, been getting worse as time goes on, and also problems with processing information (decision making, etc0 that is affecting my job. I've been diagnosed since the fall of '98 with neurosarc. Finally my neurologist suggested some neuropsych tests that I will have on May 4th. I have been in my job for 24 years but am finally having some real problems in accomplishing my goals at work and worried about the consequences. Can anyone tell me what I might expect from this type of test and what my next step should be after? I also have numbness in my lower left leg that is getting worse, especially the more I walk the more numb it becomes and after a time causes me to limp. I also have balance problems which cause me to stumble at least a few times everyday. Sometimes when I am asked a question I can't even speak and feel like a deer in headlights because my mind can't process the question right away, I guess I must look crazy with just a blank stare when that happens. Can anyone tell me if they have these problems? Thanks and I hope that everyone has a better day today.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi Claude - I'm relatively new to the group, but I just want to tell you that when I read your email this morning, I cried. I know that I, too, am headed in the same health direction, and I'm scared as "h - e - double hockeysticks," as my son would say, so I can't even imagine what you're going through! I'm praying for you. Hugs, JeannieClaude Manzanares wrote: I have been having trouble with my memory, been getting worse as time goes on, and also problems with processing information (decision making, etc0 that is affecting my job. I've been diagnosed since the fall of '98 with neurosarc. Finally my neurologist suggested some neuropsych tests that I will have on May 4th. I have been in my job for 24 years but am finally having some real problems in accomplishing my goals at work and worried about the consequences. Can anyone tell me what I might expect from this type of test and what my next step should be after? I also have numbness in my lower left leg that is getting worse, especially the more I walk the more numb it becomes and after a time causes me to limp. I also have balance problems which cause me to stumble at least a few times everyday. Sometimes when I am asked a question I can't even speak and feel like a deer in headlights because my mind can't process the question right away, I guess I must look crazy with just a blank stare when that happens. Can anyone tell me if they have these problems? Thanks and I hope that everyone has a better day today.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi Claude - I'm relatively new to the group, but I just want to tell you that when I read your email this morning, I cried. I know that I, too, am headed in the same health direction, and I'm scared as "h - e - double hockeysticks," as my son would say, so I can't even imagine what you're going through! I'm praying for you. Hugs, JeannieClaude Manzanares wrote: I have been having trouble with my memory, been getting worse as time goes on, and also problems with processing information (decision making, etc0 that is affecting my job. I've been diagnosed since the fall of '98 with neurosarc. Finally my neurologist suggested some neuropsych tests that I will have on May 4th. I have been in my job for 24 years but am finally having some real problems in accomplishing my goals at work and worried about the consequences. Can anyone tell me what I might expect from this type of test and what my next step should be after? I also have numbness in my lower left leg that is getting worse, especially the more I walk the more numb it becomes and after a time causes me to limp. I also have balance problems which cause me to stumble at least a few times everyday. Sometimes when I am asked a question I can't even speak and feel like a deer in headlights because my mind can't process the question right away, I guess I must look crazy with just a blank stare when that happens. Can anyone tell me if they have these problems? Thanks and I hope that everyone has a better day today.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 im going throw some same problems i found out 6mos that had been living with somthing for 10years i realize i been working two jobs all my life i would make more in disable than working and that to protect me i can always work again but walking long dis,standing ive lost 40% of lung use ,it very hard for me becuse i like working doing things ,but it i must enjoy life ,what i will tell you is to pray ,and give it to god .its a train ride but only you can reduce the speed . adrian goiClaude Manzanares wrote: I have been having trouble with my memory, been getting worse as time goes on, and also problems with processing information (decision making, etc0 that is affecting my job. I've been diagnosed since the fall of '98 with neurosarc. Finally my neurologist suggested some neuropsych tests that I will have on May 4th. I have been in my job for 24 years but am finally having some real problems in accomplishing my goals at work and worried about the consequences. Can anyone tell me what I might expect from this type of test and what my next step should be after? I also have numbness in my lower left leg that is getting worse, especially the more I walk the more numb it becomes and after a time causes me to limp. I also have balance problems which cause me to stumble at least a few times everyday. Sometimes when I am asked a question I can't even speak and feel like a deer in headlights because my mind can't process the question right away, I guess I must look crazy with just a blank stare when that happens. Can anyone tell me if they have these problems? Thanks and I hope that everyone has a better day today. Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
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