update

[Guest guest]

Mitch, have you had a neuropsych evaluation? That can often show which areas of the brain are affected, even if no lesions are seen on Mri. Sometimes the symptoms are from inflammation of the blood vessels, which can be intermittent & not visible on MRI.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mjcv29a@...Date: Fri, 26 Nov 2010 18:55:54 -0500Subject: Re: Update

I'm 49 and trying to figure out if this is the Sarc or getting old. How old is everyone else who's having memory problems? (if you don't mind saying). I'm getting scared because since the last "episode" (I saw the word from below) I had. I have been much worse then ever before. It's actually scaring me. I can't think of simple words and it happens daily. I'm ordering an MRI of my Brain this week because I am petrified that it's the Sarc

Re: UpdateTo: Neurosarcoidosis Date: Sunday, November 21, 2010, 3:55 PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

I'm 61 now (pushing 62, in Feb.) & the worst of my memory problems was 7-8 years ago, when the sarc was very active. I could be driving down a street I knew well, & find myself thinking, "where the heck am I?" Or going to an ATM & looking at the card with no idea what to do with it. I don't remember how many times I went the wrong way on a freeway & miles later had no idea where I was. Those episodes improved with treatment. I've been in remission for about 4 years now & still have problems with word retrieval (thanks, ; it's nice to have a name for it.). It's different from the forgetfulness I've had for 40 years (calling one of my kids by the dog's name, etc.). I worry a bit about early dementia since both of my parents had Alzheimer's. I do the daily crossword & Sodoku puzzles & other brain teasers, take fish oil supplements & hope for the best! I think it's difficult to figure out what is a result of getting older, what is sarc & what is due to other issues (Alzheimer's, etc.). The doctors make it worse, blaming aging or "hormones." I remember telling one of my doctors--this was before I got the NS diagnosis--that I didn't get "older" overnight, but my symptoms appeared almost overnight! He still pooh-poohed it all. Ignorant, arrogant a-hole.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: krumdawg@...Date: Fri, 26 Nov 2010 18:21:20 -0600Subject: Re: Update

Well I am 46 and I believe that my memory issues are the result of my neurosarcoidodis and also prednisone use. I am at 2 mg and will be off prednisone. May the Lord protect us all and bless all.

Greg Sent from my iPhone

I'm 49 and trying to figure out if this is the Sarc or getting old. How old is everyone else who's having memory problems? (if you don't mind saying). I'm getting scared because since the last "episode" (I saw the word from below) I had. I have been much worse then ever before. It's actually scaring me. I can't think of simple words and it happens daily. I'm ordering an MRI of my Brain this week because I am petrified that it's the Sarc

Re: UpdateTo: Neurosarcoidosis Date: Sunday, November 21, 2010, 3:55 PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

Rose,

I've seen and had everything done, everywhere poked, prodded and stuck in the last 10 years. LOL I travel 5 hours round trip every 1-2 months to see my Neurologist who's certified in Clinical Neurophysiology, sleep disorders. Board Certified in Psychiatry and Neurology with added Qualifications in Clinical Neurology and sleep Medicine. LOL I used to be impressed by these things until I got in the field and found you got a new diploma or Certification every time you shake someone's hand. But he's the best I've found. My Pulmonologist I was driving over 2 hours in traffic one way to go see him until he started to call himself a Sarcologist" and tell me over and over again it's a painless disease (now I'm looking for someone closer because between the research that I've done (which dwarfs to the stuff you guys have done) I can lead someone around here through the normal stuff and then I'll find someone Like Baughman in Cincinnati who knows what he's doing.. I take every supplement that's made that has to deal with every part of my body that's effected by the Sarc or by the Meds and more meds then any 50 people should take in a lifetime.

I normally have a decent attitude but after the last two episodes especially the last one it's finally effecting my mind. My body I had a hold on but when you start losing your mind you end up thinking Obama's doing a good job!!!! (sorry, no politics. I apologize to any Obamaphyte's, honestly)

So to make a short answer long. Yes but not since this last episode and I won't have a chance to see him until January so I figure before my insurance goes up to over $2000/month I'll order a few more scans.

Thanks for thinking above the curve as usual. Not sure what I'd do without you

G-d Bless,

Mitch

And I think we should all stop and say a prayer to G-d thanking him for spell check!

Re: Update

To: Neurosarcoidosis

Date: Sunday, November 21, 2010, 3:55 PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]



I just turned sixty in Aug. I have had NS for six years. The memory thing is depressing me because I was a Nurses assistant for twenty years and had to deal with residents and Alzimers. I just talk real slow and tell those around me I have sometimers to please bear with me. lol

I get dizzy a lot and tired but I am pretty stable otherwise.

I cried because I had no shoes until I met the man that had no feet.

Bless you and hang in there

Jackie

Re: UpdateTo: Neurosarcoidosis Date: Sunday, November 21, 2010, 3:55 PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

Mitch said: My body I had a hold on but when you start losing your mind

Mitch, I totally relate to that. If this is a recent change, I'd definitely take a close look for a flare. Gotta try to protect that brain. From adolescence on, my mind was the one thing I could always rely on. When I was in high school I was pathologically shy, family was "close to poor," I wasn't pretty--crooked teeth, ugly glasses & hand-me-down clothes. I was actually very athletic & would have done well in track, but that was before there were organized sports for girls. But I was smart! I lived in a small town & every 6 weeks I couldn't wait to look in the weekly paper for the honor roll. My name started with D, so I was usually the first one listed for my grade if I got all A's. If I got a B, Steve Elliott would be ahead of me. It seems pathetic now, but that was so important to me. Then came nursing school, working a few years, midwifery education & working another 20 years. All those years, even though I had friends, got married, had kids, & developed lots of hobbies & interests, the one thing I could count on was a good brain. So I was almost panicky when that brain began to let me down. I had adjusted to bilateral hearing loss, breathlessness, fatigue, tremors, neuropathic pain, etc., but I couldn't stand the memory loss, many typos even with proofreading 2 or 3 times. That was the nail in the coffin for my career. Nurse-midwives need to be able to juggle lots of balls, and half the time I had no idea where to find the ball, or even what a ball was. By the time I finally gave up & retired, I was only seeing 3-4 patients all day, and still staying at the clinic until 8pm or later charting, because I couldn't remember the dang medical terms!*# & !?$ and it took me forever to check all the lab work.

But it could be worse. I have a friend about my age who has Huntington's disease. His grandfather, an uncle & his mother all have/had HD, so he knew what was coming. This guy had 2 Masters' degrees, was a missionary in Thailand for 11 years & was incredibly intelligent. The last few years of employment he worked as a janitor at a private Christian university so that his two kids could get their degrees tuition-free. He really wasn't able to complete his duties as a janitor the last year or so, but the university kept him on. One day his son asked him how he felt about the whole situation, because he really hadn't said much about it. Marvin thought about it and answered, "Well, I always really liked my mind." That has come back to me so many times. I really liked my mind too, but it's working a whole lot better than Marvin's. Last fall his wife finally had to move him into a small group home. She's a pastor & she just couldn't keep him home any longer. I'd be surprised if I ever deteriorate to that point. So, when I get feeling sorry for myself because I had to retire a lot sooner than I planned, because I won't have the comfortable retirement I anticipated, and definitely won't be joining the Peace Corps like I had hoped, I remember Marvin. One of the good things for him is that he no longer remembers that his son also has the gene for HD & will suffer the same fate unless there is some major progress in research & treatment. Their daughter is free of it. She & her husband are teaching missionaries in Indonesia, with their two small boys; not sure how much of a blessing that is.

Anyway, the point is (I tend to say that a lot; did you notice?!?), many of my cognitive issues improved with treatment, first Pred & Imuran for 2+ years, tapered off first the Pred, then Imuran. After a few months, both the cognitive & neuropathic symptoms worsened, so took MTX for 2 years, seemed to go into remission, so carefully weaned off the MTX, and so far, so good. I've been pretty stable cognitively for the past few years, crossing my fingers & knocking on particle board. I still make typos, which I still miss on proofreading, but usually catch the first or second time (English was my best subject & I was the editor of my high school paper, so it galls me to make those mistakes. I can still spot typos a mile away in my town newspaper!). I was an excellent writer & always hoped to write at least one book; not sure that will ever happen. Right now my priority is going through all my unopened mail & other papers, sorting everything out & trying to decide if I should change insurance carriers or stick with the same one. Then the tax business will be coming up. I need to figure out if my son has paid me back some money he borrowed last year--he's been giving me extra money as he has it, and once in awhile he'll ask me how much he still owes. Heck, I have no idea! He may have already repaid the debt! I have to find the paper that I was recording the payments on. But I hate to even tackle any of that--it's just so exhausting to try to focus on anything that long. I already had problems with focus & organization due to adult ADD when my brain was working at top speed! Now it's just a disaster.

Mitch, I started out trying to answer your questions & try to give you some reassurance. After reading all this flotsam & jetsam, you probably want to jump off a bridge! Please don't. My life isn't as hopeless & useless as it may sound. I find joy everyday & have been forced to develop other aspects of my personality not that I can't rely of my mind so much. And there is always my sick, whacky sense of humor to get me going! When that fails, I remember that God loves me, he created me, mind, warts & all, & I know that He has a purpose through all of this. I rely on 29:11 now, instead of the contents of my skull.

So, remember Bing Crosby and count your blessings instead of sheep & you'll go to sleep! It does work for me, once I can quiet down all the mice skittering around in the attic of my mind.

Okay, I think I'm done now! Talk about distraction & following thoughts here & there. Ramblin' Rose is now Cracklin' Rosie (neck, hip, & wrists!), so time to hit the sack. May pop in the hot tub for a few minutes first.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mjcv29a@...Date: Fri, 26 Nov 2010 20:40:43 -0500Subject: Re: Update

Rose,

I've seen and had everything done, everywhere poked, prodded and stuck in the last 10 years. LOL I travel 5 hours round trip every 1-2 months to see my Neurologist who's certified in Clinical Neurophysiology, sleep disorders. Board Certified in Psychiatry and Neurology with added Qualifications in Clinical Neurology and sleep Medicine. LOL I used to be impressed by these things until I got in the field and found you got a new diploma or Certification every time you shake someone's hand. But he's the best I've found. My Pulmonologist I was driving over 2 hours in traffic one way to go see him until he started to call himself a Sarcologist" and tell me over and over again it's a painless disease (now I'm looking for someone closer because between the research that I've done (which dwarfs to the stuff you guys have done) I can lead someone around here through the normal stuff and then I'll find someone Like Baughman in Cincinnati who knows what he's doing.. I take every supplement that's made that has to deal with every part of my body that's effected by the Sarc or by the Meds and more meds then any 50 people should take in a lifetime.

I normally have a decent attitude but after the last two episodes especially the last one it's finally effecting my mind. My body I had a hold on but when you start losing your mind you end up thinking Obama's doing a good job!!!! (sorry, no politics. I apologize to any Obamaphyte's, honestly)

So to make a short answer long. Yes but not since this last episode and I won't have a chance to see him until January so I figure before my insurance goes up to over $2000/month I'll order a few more scans.

Thanks for thinking above the curve as usual. Not sure what I'd do without you

G-d Bless,

Mitch

And I think we should all stop and say a prayer to G-d thanking him for spell check!

Re: UpdateTo: Neurosarcoidosis Date: Sunday, November 21, 2010, 3:55 PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg