Re: Re: Short Term/Long Term Menory and Sarcoid

[Guest guest]

Hello ,

I have been dxd fall of 01. and at that time before the right treatment, I had severe short term memory and also black outs where i was driving down a street i walked and drove most of my life .. and all of a sudden i didn't know where i was or know anything around me.. that was the scarest thing i ever went through..

as of today my long term memory is great .. but it was funny so here this is a funny at myself, i sneezed and my son said bless u .. and i said did i sneez? ... to this day it makes me laugh...

But i have severe cognitive problems also. but sorry i got off the subject, i started in 01 cognitive theraphy and they helped me learn how to make short term memory be long term..

so u might want to ask ur dr about seeing a neuro psyco. they might be able to help u..

many blessings and hugs

[Guest guest]

Hi ,

I'm in the same situation as you are. I am in a technical support position for scientists (some Nobel prize winners) and have to remember how to troubleshoot software and work with Linux. There are days (like today) when my memory turns into soup. The only way I can function is to carry a notebook with me and document everything important. My short term memory is the most effected, I can walk 10 feet to do something then forget what it was when I get there. I have to hide how serious my memory problems are, I shouldn't be working like this. Good thing I'm not an air traffic controller.

Not having doctors who will listen and take time to evaluate your problems is not good. Look for new doctors. Your memory problems might be because of the drugs your taking, you might try taking your meds after work and seeing if it helps.

BTW, I'm having problems speaking as well, forgetting words or mispronouncing them. This sickness stinks.

best of luck,

Rick

Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis Date: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

I read with heartfelt sadness for everyone who is affected by this disease. While I am not the direct sufferer in our case, being the caregiver is tough as well. jenny suffers with both the cognitive loss and the speech difficulties. When the diagnosis forst hit there was some memory loss and forgetful words. We have progressed to the being unable to work and at times having speech difficulties which leave her speaking nothing but undeteminable words and gibberish. To say that this disease stinks is an under statement. She worked for years in the floral industry meeting and assisting clients, something she can no longer do. I see how frustrating this has made her at times. I pray that some day they will find a cure and that no one will have to suffer any longer. Until that time I offer out my hope

and prayers to everyone who is touched by this illness.Matt

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

Make sure you are taking Folic Acid daily. You should also take a good Vit B complex, to get the dose that works for you, increase it until you get the wonderful Niacin hot flashes, and then take it back to where they back off. That is the dose you need.

All of the immunosuppressants rob our B vitamins-- and many of us have problems with assimilating (sp) different vitamins anyway, so you can be assured that you are low in many of them. B's really work on the memory part of the brain, so they help with memory issues. They also really effect mood.

I've found that playing Scrabble online, or Mahjongg (AARP site has several good, free ones) that the concentration it takes helps keep the cognitive stuff together.

I just went thru an episode where I had to stop my Methotrexate and my Remicade for 10 weeks, and by week 8-- my brain fog was back full force. As soon as I restarted these two, my mind cleared up somewhat. I'm still pickign the wrong words to explain what I mean-- but I tell people to work for the "jest" of the conversation-- most will insert the right words.

Hope this helps

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Saturday, October 10, 2009 9:09:23 AMSubject: Re: Re: Short Term/Long Term Menory and Sarcoid

Hi ,

I'm in the same situation as you are. I am in a technical support position for scientists (some Nobel prize winners) and have to remember how to troubleshoot software and work with Linux. There are days (like today) when my memory turns into soup. The only way I can function is to carry a notebook with me and document everything important. My short term memory is the most effected, I can walk 10 feet to do something then forget what it was when I get there. I have to hide how serious my memory problems are, I shouldn't be working like this. Good thing I'm not an air traffic controller.

Not having doctors who will listen and take time to evaluate your problems is not good. Look for new doctors. Your memory problems might be because of the drugs your taking, you might try taking your meds after work and seeing if it helps.

BTW, I'm having problems speaking as well, forgetting words or mispronouncing them. This sickness stinks.

best of luck,

Rick

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

Thanks for the advice about the B vitamins.

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

Mine started in my lungs also and then spread to other areas. Most of the sarc starts in the lungs -- but not always. It attacks in so many different ways and each person seems to be different. It is important to stay on top of the sarc with regular checkups with your Doctor and be sure to alert him/her with any different symptom you might have. Check out our Archives and the FILES section. We have a lot of very good info there. Hope this helps.

Hugs,

Darlene

NS Co-Owner/Moderator

Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that. > > >

[Guest guest]

I take a sublingual B-12 with ginseng(?) and it gives me some added energy that I desperately needed. At least I can keep the apartment picked up and not sleep for 12 plus hours at a time. It has some B-6 and folic acid in it ,too. S.Life is short...live it to the fullest...to your last living breath.

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

's started in the brain. For many years it caused seizures which now I firmly believe were a symptom of the sarc. The doctors originally treated for the seizures and did not really check anything else. For many years the seizure meds seemed to do the trick of controlling issues and then suddenly everything went bad. It was then that they diagnosed the neurosarcoidosis. Bythis time the damage was well on its way to being done. matt

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term

memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that. > > >

[Guest guest]

You are not alone. My sweet struggles at times to form a complete sentence and I can see the frustration build. There are times I have to stop her and in order to get what she needs reduce her answers to a yes or no, with me trying to fill in the sentence. The doctors have told us that what has been lost is gone, but I keep fighting to get her assistance to hopefully help her speech etc. I can only hope that others suffering with the speech issues will recover. Take careMattSubject: Re: Re: Short Term/Long Term Menory and SarcoidTo:

Neurosarcoidosis Date: Sunday, October 11, 2009, 1:21 PM

--- It's comforting to hear that I'm not alone with this speaking issue and it being related to NS, I was beginning to think I was developing something worse. I guess it's my methotrexate?

Rick

[Guest guest]

Mine started in the brain/nervous system. First came the dizziness, then leg weakness, bells palsy like facial and finally complete lost of motor function on my right side and left lower extremities. Luckily I am able to work most of myself by myself. I still have trouble with balance, and leg and feet muscles. And most of the time I don't even know where my feet are. They are numb that way. I do feel pain in the skin of my feet though.

I had therapy for 2 years before they said sorry we can't do anymore with you. HAH I am doing it myself. I am walking, driving and even swimming. So take that you rehab. therapists.

Jackie

Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that. > > >

[Guest guest]

Rick, it isn't necessarily that the speech problems are being caused by the medications. More than likely the sarcoidosis is causing some inflammation in the part of the brain that controls speech and short term memory. They can check this out with Neuropsych testing.

For many of us, we don't have "granulomas or plaques" on our brains, but we still struggle with cognitive skills. This can be caused by inflammation of the blood vessels in the brain. This inflammation can be in the form of vasculitis. Many times it's transient, meaning that whatever area is getting pressure from the inflammation will show defects on Neuropsych tests. The next time it's tested, it may not be there-- and that can be a day to day process.

Also, if you're taking Ambien to sleep, the long term usage of this drug can cause short-term memory loss-- but by getting off it, the memory improves.

Stopping taking a sleeping pill is a slow process, as our brains do become dependent on them to sleep. You may want to try adding L-tryptophan, and melatonin (add only 1 thing at a time so you know what is different should you have a reaction to any of the herbals or meds) and see how that works. To totally quit cold turkey on any sleep med is not a good thing-- not only will you not sleep, but you increase the risk of seizures as well as depression and increased pain levels.

For me, Plaquenil and Methotrexate seemed to help my cognitive abilities, and I wasn't sure it was, until I stopped them-- (one at a time) and saw what happened. They were definately helping, the plaquenil with my lungs and memory, the MTX with the body joint pain and my breathing. Once we added the Remicade, alot of my cognitive and reasoning came back, and it's mainly when I'm due for an infusion that I start noticing my backsliding now.

It really is a hit and miss drug trial-- and it's important to start with the least offensive -- Prednisone, and then add as needed.

BTW--PRED CANNOT BE STOPPED COLD TURKEY!!!! YOU HAVE TO TRITRATE, OR YOU RISK ADRENAL CRISIS! SO WEAN OFF SLOWLY AND UNDER THE SUPERVISION OF YOUR MD.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sunday, October 11, 2009 7:11:13 PMSubject: Re: Re: Short Term/Long Term Menory and Sarcoid

You are not alone. My sweet struggles at times to form a complete sentence and I can see the frustration build. There are times I have to stop her and in order to get what she needs reduce her answers to a yes or no, with me trying to fill in the sentence. The doctors have told us that what has been lost is gone, but I keep fighting to get her assistance to hopefully help her speech etc. I can only hope that others suffering with the speech issues will recover. Take careMatt

From: Rick Jack <jack11973 (AT) yahoo (DOT) com>Subject: Re: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 1:21 PM

--- It's comforting to hear that I'm not alone with this speaking issue and it being related to NS, I was beginning to think I was developing something worse. I guess it's my methotrexate?

Rick

[Guest guest]

Wow! That B12 with Ginseng would give you a boost. Be careful not to take it at night, it will keep you up-- better than caffeine! Personally, I'd just go with the extra B compound. It won't be as immediate, but it will be effective over time.

Thanks ,

Tracie

To: Neurosarcoidosis Sent: Sunday, October 11, 2009 6:57:22 PMSubject: Re: Re: Short Term/Long Term Menory and Sarcoid

I take a sublingual B-12 with ginseng(?) and it gives me some added energy that I desperately needed. At least I can keep the apartment picked up and not sleep for 12 plus hours at a time. It has some B-6 and folic acid in it ,too. S.Life is short...live it to the fullest...to your last living breath.

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

You're welcome.

To: Neurosarcoidosis Sent: Sunday, October 11, 2009 6:32:08 PMSubject: Re: Re: Short Term/Long Term Menory and Sarcoid

Thanks for the advice about the B vitamins.

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

lol...no, just one in the morning when i am making my breakfast. It has also helped my memory problems a bit. My mom told me that she had B-12 shots years ago and they made her feel better, too. hugs S.Life is short...live it to the fullest....to your last living breath.

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

Hi Dawn,

Congrats on your degree. This reminded me on another problem I'm having.....reading.

I can't concentrate and loose my place very easily. I stopped reading because of it and only read technical manuals as needed for work or hobbies, but even that does not sink in unless I read it at a snails pace or over and over again. I would of never been able to handle a course like you have. I never was like this.

I can't write long emails as well.

Does anyone else have reading problems?

Rick

Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis Date: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term

memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that. > > >

[Guest guest]

hi, to tell the truth I don't really remember how it started. I remember that I was having headaches, trouble parallel parking and walking especially up stairs and then apparently I had a sezuire that led to an MRI. I was going to the doctors a lot prior to that with various symptoms that seemed unrelated at the time but they thought I was just a stressed out work aholic having a relapse of an eating disorder and only being in my early 20's there was no reason to worry. After the MRI and with a family history of NS (my mother) the testing began. 09, zach zinkon wrote:

Subject: Re: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis Date: Sunday, October 11, 2009, 7:22 PM

how did everyone's sarc start. mine, they found in my lungs with no symptoms. i am 32 and is this just the start?

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know

I am not the same as before. How does one deal with that. > > >

[Guest guest]

Thanks for the advice of the B 12 Vtamains nevr took vitamins at all.

Re: Short Term/Long Term Menory and Sarcoid

To: Neurosarcoidosis@ yahoogroups. com

Date: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

MY sar was lung biopsy diagnosis about 12 years ago no treatment until 2008

Re: Short Term/Long Term Menory and Sarcoid

> To: Neurosarcoidosis@ yahoogroups. com

> Date: Saturday, October 10, 2009, 2:35 AM

>

>

>

>

>

>

> It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

>

>

>

[Guest guest]

they say that my sarc is in my lungs, but i'm afraid that it will get worse. i am not symptomatic and they caught it by accident. how long after they found yours did you start being symptomatic

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that. > > >

[Guest guest]

Folic Acid ( is very important to take if your on Methotrexate, it will prevent fever blisters.

From: brianryan_99 <brianryan_99@ yahoo.com>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Saturday, October 10, 2009, 2:35 AM

It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that.

[Guest guest]

Rick

I used to read til 4 in the morning but my attention span got so bad I couldn't concentrate long enough to wat an hour long tv show. I'm able to follow movies now and hope my love of reading will come back too. I can't follow knitting patterns so I have to keep practicing every part separately for a year then it finally sinks in. It must have to get in my long term memory to stick. I'm still recovering from the MRSA surgery on my elbow that doesn't want to heal. This disease really p's me off! My inability to follow procedure changes cost me my job. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

To: Neurosarcoidosis Sent: Mon, October 12, 2009 8:36:54 AMSubject: Re: Re: Short Term/Long Term Menory and Sarcoid

Hi Dawn,

Congrats on your degree. This reminded me on another problem I'm having.....reading.

I can't concentrate and loose my place very easily. I stopped reading because of it and only read technical manuals as needed for work or hobbies, but even that does not sink in unless I read it at a snails pace or over and over again. I would of never been able to handle a course like you have. I never was like this.

I can't write long emails as well.

Does anyone else have reading problems?

Rick

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I

know I am not the same as before. How does one deal with that. > > >

[Guest guest]

,

I'm sorry that NS cost you your position and everything your going through with your elbow. It sounds like your doing the best you can, stay strong in body and mind.

I'm already living out my "bucket list" and keeping as busy as I can with hobbies. It's all we can do.

warm regards,

Rick

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I

know I am not the same as before. How does one deal with that. > > >

[Guest guest]

Rick

Trying to figure out what to do with all the time can get confusing sometimes. I do alot of charity knitting when I'm not feeding the shopaholic side of me. LOL I have lot of requests and plenty of yarn to keep me busy for quite some time. I haven't seen the bucket list movie yet. I guess I should put it on my movie bucket list! I can't believe come November it's been 5 years since I last went to work! Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

To: Neurosarcoidosis Sent: Tue, October 13, 2009 7:58:30 AMSubject: Re: Re: Short Term/Long Term Menory and Sarcoid

,

I'm sorry that NS cost you your position and everything your going through with your elbow. It sounds like your doing the best you can, stay strong in body and mind.

I'm already living out my "bucket list" and keeping as busy as I can with hobbies. It's all we can do.

warm regards,

Rick

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I

know I am not the same as before. How does one deal with that. > > >__________________________________________________

[Guest guest]

Hi Zach,My my sarcoidosis started in my lungs in 2002.I was trying to get a job as a jailer.My intent was to get hired then apply for a counselor position.This job required a physical that included a chest xray. That is how i had sarcoidosis in the lungs.In 2003 i was diagnosed with it in both eyes.The sarcoid arthritis followed and last April I went into the hospital for extreme balance problems and dizziness.I was told i had neurosarcoidosis.I pray that your sarcodosis does not become symptomatic.I haven't gone in remission since I was diagnosed.I had to quit my job as a mental health case manager and apply for disability.I struggled with the note I had to put in tha palm pilot.It took ten to eleven hours to do an eight hour job. I worked with homeless clients that were diagnosed with mental illness and alcohol and

drug addiction.The sarcoid arthritis prevented me from climbming the stairs to get medical charts,I stayed behind on my notes.The supervisor worked with me but I eventually had to resign.BE BLESSED.AS YOUR DAY SO MAY YOUR STRENGTH BE.HELEN

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Short Term/Long Term Menory and SarcoidTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, October 11, 2009, 4:53 PM

Hi Guys,I too suffer from poor short term memory. Since I am an RN, I can't imagine what kind of harm I would do if I went back to work like this. I had to withdraw from school too- I was studying for my master's in nursing but wasn't able to handle the coursework due to memory problems (I graduated college before with a 3.95 gpa). The whole situation depresses me. I hope that they can get my meds under control- we have tried several combos that all have nasty side effects and yet do not seem to slow the progression. I have the sarc now in several sites- lungs, lymph nodes, neuro, joints, and heart. If anyone has any suggestions to help with the short term memory loss I would be willing to try almost anything! I will keep you all in my prayers!Dawn from NY> > > From: brianryan_99 <brianryan_99@ ...>> Subject: Re: Short Term/Long Term Menory and Sarcoid> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, October 10, 2009, 2:35 AM> > > > > > > It seems like some doctor visits are good and bad. Seems like some days they listen and other days they don't. My long term memory seem to be fairly intact, where as my short term memory is Swiss cheese. I am going to try to go back to work at the end of the month, but sort of not sure how my boss and co workers will look at me. I know I am not the same as before. How does one deal with that. > > >

[Guest guest]

Boy can I relate to you. I am making up new words every day. lol It is

really frustrating isn't it. Well we are what we are. I am 59 so I just

chalk it up to age. My family understand and are correcting me all the

time. It doesn't bother me so much any more.

You hang in there and smile with each mistake. Work on your motor skills

more if you can.

Love and prayers

Jackie

Re: Short Term/Long Term Menory and Sarcoid

> > To: Neurosarcoidosis

> > Date: Saturday, October 10, 2009, 2:35 AM

> >

> >

> >

> >

> >

> >

> > It seems like some doctor visits are good and bad. Seems like some days

> > they listen and other days they don't. My long term memory seem to be

> > fairly intact, where as my short term memory is Swiss cheese. I am going

> > to try to go back to work at the end of the month, but sort of not sure

> > how my boss and co workers will look at me. I know I am not the same as

> > before. How does one deal with that.

> >

> >

> >

>

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