Re: (Rose)Misc. answers & comments - hearing loss

August 15, 2006

Hi Rose,

Good to see your back in action again with ole Sparky!

Hey I see you said you lost your hearing in your right ear 7 years ago? I started losing my hearing about 9 years ago in both ears equally. I've completely lost the high pitched hearing in both ears now. All docs tell me it has nothing to do with the sarc. I say it's a bunch of malarky! Ever since I was diagnosed with the sarc I told them all it was from that. If my memory serves me correct (which would be a miracle!), someone else in the group mentioned hearing loss? How do they see it's caused from the sarc? Right before the hearing loss they thought I had a brain tumor because I had a 24/7 migraine headache for over 3 months straight. I was in California at the time and had horrible docs. By the time I was at the tail end of the headache they finally did a CT scan and found nothing. I believe an MRI would have showed them something. They might have seen some the beginning of my sarc that started my hearing loss. Guess it doesn't really matter now does it? It will always be a question in my mind as to when it all actually started for sure.

Do you have a hearing aid? If so does it help? Having the hearing loss that I do, it's very difficult to hear certain people talk, especially little kids. I had hearing aids made and paid for by insurance 7 years ago, but they are worthless today. They are computerized and way outdated and no program anymore to fix them. Now this insurance won't even give me a hearing test if you have health related hearing loss! You'd think that's when they would right? Oh well.

Rose, I hope you're doing good and your computer stays healthy. Tracie is right, you should use AVG and the SPY ware stuff. I use both of those programs faithfully. Mine stays healthy.

Hugs and Blessings!

Diane in TX

Yeah, Connie, I knew that. I thought they retired it after it malfunctioned & set some guy's hair on fire. I named my computer Sparky a few years ago because it kept doing weird things that my computer geek friends had never seen. I said it was probably going to blow up in my face one day, which it hasn't, but it keeps doing weird things. But hey, it's still going after 6+ years.

You know what--I just realized that it's been 7 years since NS sneaked up on me & wiped out the hearing in my right ear. Of course, at the time no one realized it was NS. NS, hinky computer . . . . . coincidence? I think not.

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Misc. answers & commentsDate: Tue, 15 Aug 2006 20:21:59 -0700 (PDT)

Hey Rose,Do you happen to know who "ol sparky" is in Florida?Gracious girl, it's the electric chair at raifordprison. Me thinks it's time to rename the computer. (forgive me i'm feeling mischievious - but that reallyis that things name) Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------I've been reading the mail but couldn't respond for acouple of days; ol' Sparky was having one of his fits.Finally got him scanned & plucked (couple of viruses) & now I can type! Before when I tried to typeanything, weird stuff would come up on the screen & Iwould lose my email. Seems okay now though. Soinstead of individual messages, y'all are getting onebig one!Ron, I agree with everyone else about the toe jam. You know that you should be checking those suckersevery day, don't you? Use a mirror if you aren'tagile enough to see the bottoms of your feet. Otay? Otay!, you go girl! You are right, that kind ofnews perks everybody up! You deserve good things inyour life. And you'll get free vet care. Angie & Diane, good to meet another camper from CampBaughman! I just saw him in July. A few months ago Itried to get everybody who sees him to coordinate ourvisits so we could have a party, but couldn't get itdone. Diane, if Cincinnati is a tad far for you to gofor regular visits, see if you can make it for aconsultation visit. Baughman is willing to work withyour local doctors, as long as they have any sense. Angie, where is Lancaster?Tracie, does a person have to be "normal" to help withthe "normal" chats? I might not be eligible. I'mgoing to try very hard to make the faith chat on Wed.,and I'll try really hard to make the "normal" chat onThurs. The only catch there is that my cousin Lulu iscoming from San Diego with at least 2 of her kids, andshe might be getting in Thurs. evening. If so, Idoubt I'll make it to the chat. But I am putting asticky note on the computer right now to remindmyself!Quint, my memory must have failed me about the grits & ants. I'm sorry, Godfather. Please don't punish me! Wayne, welcome to the group! We are always glad whenpeople find us; just wish it was for another reason. Do you mind a few questions? Where do you live? Areyou working? How long have you had symptoms? Howwere you diagnosed & do you feel comfortable with yourhealth care providers? How is the NS affecting younow? Do you have good family support? Are you a Cubsfan? (slipped that one in to see if you were stillawake!) Don't worry if responses are a little slow;we are all sick ourselves & sometimes it takes awhileto answer.Hey to Marla, Connie, Barb, , , ,, Matt & anybody I left out!A big cyber hug to Darlene & family! So glad that youare doing better. Hope you are back with us soon. Ramblin' RoseModerator---------------------------------Get real-time traffic reports with Windows Live LocalSearch __________________________________________________

August 16, 2006

Diane, I have bilateral hearing loss, the left ear went 6 months after the right one. Ron also has hearing loss and I know there are others. I also have trouble with the higher pitches. I had hearing aids for both ears, but lost the right one last year. When I bought them in 1999-2000, they were $1600 each. Now it would cost $2200 for a comparable aid and more like $2600+ for the newer ones. My insurance didn't pay anything on mine and of course Medicare doesn't cover them, so unless I inherit some money or something, I'll just go with the one. They do help quite a lot, especially when I had both! The problem for me is that by having to amplify the higher tones so I can hear them is that it amplifies everything, including those little kids! Ohhhh, I can't stand to hear little kids crying or screaming; I have to turn my hearing aid off.

Why do your doctors say sarc didn't cause the hearing loss? What kind of doctors are they, anyway? The auditory nerves are favorite targets of sarc. This is from the Medline article on neurosarcoidosis (in Links):

Neurosarcoidosis may affect any part of the nervous system. Sudden, transient facial palsy (facial weakness) is common with involvement of cranial nerve VII. Any nerve can be affected, including the nerves of the eye and the nerves that control taste, smell, or hearing.

Maybe you can print that article out, along with some of the others that discuss hearing loss with NS. That headache episode along with the hearing loss sure sounds like something going on in your central nervous system, doesn't it? I think most doctors now are just so dependent on technology that they don't trust themselves to make a diagnosis without test results to back it up. Actually, when I had the second ear go kaput, the big concern was MS; I had an MRI to rule that out. Nobody thought of NS, even though I'd had a positive lymph node biopsy 5 years earlier. I've always wondered what an ACE level would have been back then.

Diane, doesn't it stink that insurance doesn't cover something as basic & important as hearing loss? One thing you might check into is a reconditioned aid. My audiologist has one that is essentially the same as the one I have; I can get it for $500, but I don't have the $500. She's going to hold it for me for awhile, but between heartworm treatment for my Annie dog and a wheel bearing for my car, there doesn't seem to be any extra money floating around.

BTW, I do have the Ad-Aware/Lavasoft program & Avast Anti-virus. They are very good, but I haven't figured out a way to get them to run automatically, so I have to remember to do it.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Re: (Rose)Misc. answers & comments - hearing lossDate: Tue, 15 Aug 2006 23:40:20 -0500

Hi Rose,

Good to see your back in action again with ole Sparky!

Hey I see you said you lost your hearing in your right ear 7 years ago? I started losing my hearing about 9 years ago in both ears equally. I've completely lost the high pitched hearing in both ears now. All docs tell me it has nothing to do with the sarc. I say it's a bunch of malarky! Ever since I was diagnosed with the sarc I told them all it was from that. If my memory serves me correct (which would be a miracle!), someone else in the group mentioned hearing loss? How do they see it's caused from the sarc? Right before the hearing loss they thought I had a brain tumor because I had a 24/7 migraine headache for over 3 months straight. I was in California at the time and had horrible docs. By the time I was at the tail end of the headache they finally did a CT scan and found nothing. I believe an MRI would have showed them something. They might have seen some the beginning of my sarc that started my hearing loss. Guess it doesn't really matter now does it? It will always be a question in my mind as to when it all actually started for sure.

Do you have a hearing aid? If so does it help? Having the hearing loss that I do, it's very difficult to hear certain people talk, especially little kids. I had hearing aids made and paid for by insurance 7 years ago, but they are worthless today. They are computerized and way outdated and no program anymore to fix them. Now this insurance won't even give me a hearing test if you have health related hearing loss! You'd think that's when they would right? Oh well.

Rose, I hope you're doing good and your computer stays healthy. Tracie is right, you should use AVG and the SPY ware stuff. I use both of those programs faithfully. Mine stays healthy.

Hugs and Blessings!

Diane in TX

Yeah, Connie, I knew that. I thought they retired it after it malfunctioned & set some guy's hair on fire. I named my computer Sparky a few years ago because it kept doing weird things that my computer geek friends had never seen. I said it was probably going to blow up in my face one day, which it hasn't, but it keeps doing weird things. But hey, it's still going after 6+ years.

You know what--I just realized that it's been 7 years since NS sneaked up on me & wiped out the hearing in my right ear. Of course, at the time no one realized it was NS. NS, hinky computer . . . . . coincidence? I think not.

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Misc. answers & commentsDate: Tue, 15 Aug 2006 20:21:59 -0700 (PDT)

Hey Rose,Do you happen to know who "ol sparky" is in Florida?Gracious girl, it's the electric chair at raifordprison. Me thinks it's time to rename the computer. (forgive me i'm feeling mischievious - but that reallyis that things name) Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------I've been reading the mail but couldn't respond for acouple of days; ol' Sparky was having one of his fits.Finally got him scanned & plucked (couple of viruses) & now I can type! Before when I tried to typeanything, weird stuff would come up on the screen & Iwould lose my email. Seems okay now though. Soinstead of individual messages, y'all are getting onebig one!Ron, I agree with everyone else about the toe jam. You know that you should be checking those suckersevery day, don't you? Use a mirror if you aren'tagile enough to see the bottoms of your feet. Otay? Otay!, you go girl! You are right, that kind ofnews perks everybody up! You deserve good things inyour life. And you'll get free vet care. Angie & Diane, good to meet another camper from CampBaughman! I just saw him in July. A few months ago Itried to get everybody who sees him to coordinate ourvisits so we could have a party, but couldn't get itdone. Diane, if Cincinnati is a tad far for you to gofor regular visits, see if you can make it for aconsultation visit. Baughman is willing to work withyour local doctors, as long as they have any sense. Angie, where is Lancaster?Tracie, does a person have to be "normal" to help withthe "normal" chats? I might not be eligible. I'mgoing to try very hard to make the faith chat on Wed.,and I'll try really hard to make the "normal" chat onThurs. The only catch there is that my cousin Lulu iscoming from San Diego with at least 2 of her kids, andshe might be getting in Thurs. evening. If so, Idoubt I'll make it to the chat. But I am putting asticky note on the computer right now to remindmyself!Quint, my memory must have failed me about the grits & ants. I'm sorry, Godfather. Please don't punish me! Wayne, welcome to the group! We are always glad whenpeople find us; just wish it was for another reason. Do you mind a few questions? Where do you live? Areyou working? How long have you had symptoms? Howwere you diagnosed & do you feel comfortable with yourhealth care providers? How is the NS affecting younow? Do you have good family support? Are you a Cubsfan? (slipped that one in to see if you were stillawake!) Don't worry if responses are a little slow;we are all sick ourselves & sometimes it takes awhileto answer.Hey to Marla, Connie, Barb, , , ,, Matt & anybody I left out!A big cyber hug to Darlene & family! So glad that youare doing better. Hope you are back with us soon. Ramblin' RoseModerator---------------------------------Get real-time traffic reports with Windows Live LocalSearch __________________________________________________

August 17, 2006

Rose, I have some questions if you don't mind. My neurologist sent me to a neuro-psychologist for the testing. Found out I do have memory loss problems, some impairment of my dominant right hand, etc. (I haven't gotten to read the report for myself yet, but the neuro-psy went over the hightlights with me). The spinal tap didn't show some inflammatory process the neurologist was looking for but my albumin is not right and I think he said something else was not right. He said my blood work wasn't in there, but when I started to leave the girl just said he missed it. He has never done a gallium scan, but won't right now, he says because the ACE is not high in the spinal tap. But then he said that a positive gallium and elevated ACE are definitive diagnosis makers of neurosarc. To my knowledge, even when they thought I had a major case of lymphoma, hugh lymphs nodes/hilar, etc &

biopsied positive for sarc, I didn't have abnormal ace. Does taking prednisone everyday scew an ACE test? I don't want anymore trouble, but something isn't right - the neuropsychologist talked very straight forward to me and told me I would get worse. OK so what is up. Have you got any ideas, the neurologist told me he would see me in 6 mths, and to let him know if it got worse. He said he was not comfortable treating anything without definitely knowing because of side affects. My headaches are getting worse, my memory is getting to to be a torment especially at work, my speech problems seem to be increasing, I have these wierd shooting pains in my head, in my feet, my chest and 65 crickets singing in my ears. My breathing again appears to be deteriorating with that wierd little coughing for no reason every little bit and my heart is acting like a crazy, miswired piece of junk, i'm swelling to beat the band

(I'm a solid 4+ edema & I know how to measure that), my bp is going up even though i'm on (2) heart meds, and my joints feel like a painful rigomortis is trying to set in. (Please excuse the venting here, it's just kinda getting on my last nerve right now - I started to erase all of this, because I can name dozens of you that go through a whale of alot more than I do, and I trully know that; but just this once I won't. Wait a minute I'll handle this.....SHUT UP CONNIE!!! - There that works) Whatever.....Not much I can do I guess; it's just that I deal better with what I know straight up and out in front of me. I hate sneak attacks. Thank you Rose and all of you for all your help, grief I don't know what I would do if I couldn't ask someone some of the questions that are going through my head, and let some of the

pain & steam off. I avoid saying to much of anything at home, my family worries and it just makes them upset & I can't stand to be the cause of that. Thank you from the bottom of my heart..........Sincerely, ConnieRose wrote: Diane, I have bilateral hearing loss, the left ear went 6 months after the right one. Ron also has hearing loss and I know there are others. I also have trouble with

the higher pitches. I had hearing aids for both ears, but lost the right one last year. When I bought them in 1999-2000, they were $1600 each. Now it would cost $2200 for a comparable aid and more like $2600+ for the newer ones. My insurance didn't pay anything on mine and of course Medicare doesn't cover them, so unless I inherit some money or something, I'll just go with the one. They do help quite a lot, especially when I had both! The problem for me is that by having to amplify the higher tones so I can hear them is that it amplifies everything, including those little kids! Ohhhh, I can't stand to hear little kids crying or screaming; I have to turn my hearing aid off. Why do your doctors say sarc didn't cause the hearing loss? What kind of doctors are they, anyway? The auditory nerves are favorite targets of sarc. This is from the Medline article on neurosarcoidosis (in

Links): Neurosarcoidosis may affect any part of the nervous system. Sudden, transient facial palsy (facial weakness) is common with involvement of cranial nerve VII. Any nerve can be affected, including the nerves of the eye and the nerves that control taste, smell, or hearing. Maybe you can print that article out, along with some of the others that discuss hearing loss with NS. That headache episode along with the hearing loss sure sounds like something going on in your central nervous system, doesn't it? I think most doctors now are just so dependent on technology that they don't trust themselves to make a diagnosis without test results to back it up. Actually,

when I had the second ear go kaput, the big concern was MS; I had an MRI to rule that out. Nobody thought of NS, even though I'd had a positive lymph node biopsy 5 years earlier. I've always wondered what an ACE level would have been back then. Diane, doesn't it stink that insurance doesn't cover something as basic & important as hearing loss? One thing you might check into is a reconditioned aid. My audiologist has one that is essentially the same as the one I have; I can get it for $500, but I don't have the $500. She's going to hold it for me for awhile, but between heartworm treatment for my Annie dog and a wheel bearing for my car, there doesn't seem to be any extra money floating around. BTW, I do have the Ad-Aware/Lavasoft program & Avast Anti-virus. They are very good, but I haven't figured out a way to get them to run automatically, so I have to remember to

do it. Ramblin' Rose Moderator From: "Diane Aja" <dianeaja (AT) comcast (DOT) net>Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Re: (Rose)Misc. answers & comments - hearing lossDate: Tue, 15 Aug 2006 23:40:20 -0500 Hi Rose, Good to see your back in action again with ole Sparky! Hey I see you said you lost your hearing in your right ear 7 years ago? I started losing my hearing about 9 years ago in both ears equally. I've completely lost the high pitched hearing in both ears now. All docs tell me it has nothing to do with the sarc. I say it's a bunch of malarky! Ever since I was diagnosed with the sarc I told them all it was from that. If my memory serves me correct (which would be a miracle!), someone else in the group mentioned hearing loss? How do they see it's caused from the sarc? Right before the hearing loss they thought I had a brain tumor because I had a 24/7 migraine headache for over 3 months straight. I was in California at the time and had horrible docs. By the time I was at the tail end of the headache they finally did a CT scan and found nothing. I believe an

MRI would have showed them something. They might have seen some the beginning of my sarc that started my hearing loss. Guess it doesn't really matter now does it? It will always be a question in my mind as to when it all actually started for sure. Do you have a hearing aid? If so does it help? Having the hearing loss that I do, it's very difficult to hear certain people talk, especially little kids. I had hearing aids made and paid for by insurance 7 years ago, but they are worthless today. They are computerized and way outdated and no program anymore to fix them. Now this insurance won't even give me a hearing test if you have health related hearing loss! You'd think that's when they would right? Oh well. Rose, I hope you're doing good and your computer stays healthy. Tracie is right, you should use AVG and the SPY

ware stuff. I use both of those programs faithfully. Mine stays healthy. Hugs and Blessings! Diane in TX Yeah, Connie, I knew that. I thought they retired it after it malfunctioned & set some guy's hair on fire. I named my computer Sparky a few years ago because it kept doing weird things that my computer geek friends had never seen. I said it was probably

going to blow up in my face one day, which it hasn't, but it keeps doing weird things. But hey, it's still going after 6+ years. You know what--I just realized that it's been 7 years since NS sneaked up on me & wiped out the hearing in my right ear. Of course, at the time no one realized it was NS. NS, hinky computer . . . . . coincidence? I think not. Ramblin' Rose Moderator From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Misc. answers & commentsDate: Tue, 15 Aug 2006 20:21:59 -0700 (PDT) Hey Rose,Do you happen to know who "ol sparky" is in Florida?Gracious girl, it's the electric chair at raifordprison. Me thinks it's time to rename the computer. (forgive me i'm feeling mischievious - but that reallyis that things name) Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------I've been reading the mail but couldn't respond for acouple of days; ol' Sparky was having one of his fits.Finally got him scanned & plucked (couple of viruses) & now I can type! Before when I tried to

typeanything, weird stuff would come up on the screen & Iwould lose my email. Seems okay now though. Soinstead of individual messages, y'all are getting onebig one!Ron, I agree with everyone else about the toe jam. You know that you should be checking those suckersevery day, don't you? Use a mirror if you aren'tagile enough to see the bottoms of your feet. Otay? Otay!, you go girl! You are right, that kind ofnews perks everybody up! You deserve good things inyour life. And you'll get free vet care. Angie & Diane, good to meet another camper from CampBaughman! I just saw him in July. A few months ago Itried to get everybody who sees him to coordinate ourvisits so we could have a party, but couldn't get itdone. Diane, if Cincinnati is a tad far for you to gofor regular visits, see if you can make it for aconsultation visit. Baughman is willing to work withyour local

doctors, as long as they have any sense. Angie, where is Lancaster?Tracie, does a person have to be "normal" to help withthe "normal" chats? I might not be eligible. I'mgoing to try very hard to make the faith chat on Wed.,and I'll try really hard to make the "normal" chat onThurs. The only catch there is that my cousin Lulu iscoming from San Diego with at least 2 of her kids, andshe might be getting in Thurs. evening. If so, Idoubt I'll make it to the chat. But I am putting asticky note on the computer right now to remindmyself!Quint, my memory must have failed me about the grits & ants. I'm sorry, Godfather. Please don't punish me! Wayne, welcome to the group! We are always glad whenpeople find us; just wish it was for another reason. Do you mind a few questions? Where do you live? Areyou working? How long have you had symptoms? Howwere you diagnosed & do you feel comfortable with

yourhealth care providers? How is the NS affecting younow? Do you have good family support? Are you a Cubsfan? (slipped that one in to see if you were stillawake!) Don't worry if responses are a little slow;we are all sick ourselves & sometimes it takes awhileto answer.Hey to Marla, Connie, Barb, , , ,, Matt & anybody I left out!A big cyber hug to Darlene & family! So glad that youare doing better. Hope you are back with us soon. Ramblin' RoseModerator---------------------------------Get real-time traffic reports with Windows Live LocalSearch __________________________________________________

August 17, 2006

Connie, do you have a primary care doc (who's not listed on idiotsmoronsbozosMD.com) that can evaluate the b/p, swelling, heart stuff,etc? How about a pulmonologist to evaluate your breathing? An ENT to check your tinnitis (aks crickets. Do they sing in harmony? I love Southern Gospel.) Is the neuropsych guy going to send these results to your neurologist? The neurologist said to call if things got worse, right? Well, channel Helen Reddy and let him know you are worse, your work is suffering & you need an appt. Remember, "I am Woman! Hear me roar!" I forget if you've seen a sarc specialist or live near one. Think of a friend or relative who could & would be an advocate for you; help you do these things that you are hesitant to do for yourself. They don't have to be in the health care field; just be intelligent, curious, willing to confront bullshit, and have your best interest in mind.

Let me know how things go in the next few days.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: (Rose)Misc. answers & comments - hearing lossDate: Thu, 17 Aug 2006 15:49:32 -0700 (PDT)

Rose,

I have some questions if you don't mind. My neurologist sent me to a neuro-psychologist for the testing. Found out I do have memory loss problems, some impairment of my dominant right hand, etc. (I haven't gotten to read the report for myself yet, but the neuro-psy went over the hightlights with me). The spinal tap didn't show some inflammatory process the neurologist was looking for but my albumin is not right and I think he said something else was not right. He said my blood work wasn't in there, but when I started to leave the girl just said he missed it. He has never done a gallium scan, but won't right now, he says because the ACE is not high in the spinal tap. But then he said that a positive gallium and elevated ACE are definitive diagnosis makers of neurosarc. To my knowledge, even when they thought I had a major case of lymphoma, hugh lymphs nodes/hilar, etc & biopsied positive for sarc, I didn't have abnormal ace. Does taking prednisone everyday scew an ACE test? I don't want anymore trouble, but something isn't right - the neuropsychologist talked very straight forward to me and told me I would get worse. OK so what is up. Have you got any ideas, the neurologist told me he would see me in 6 mths, and to let him know if it got worse. He said he was not comfortable treating anything without definitely knowing because of side affects.

My headaches are getting worse, my memory is getting to to be a torment especially at work, my speech problems seem to be increasing, I have these wierd shooting pains in my head, in my feet, my chest and 65 crickets singing in my ears. My breathing again appears to be deteriorating with that wierd little coughing for no reason every little bit and my heart is acting like a crazy, miswired piece of junk, i'm swelling to beat the band (I'm a solid 4+ edema & I know how to measure that), my bp is going up even though i'm on (2) heart meds, and my joints feel like a painful rigomortis is trying to set in. (Please excuse the venting here, it's just kinda getting on my last nerve right now - I started to erase all of this, because I can name dozens of you that go through a whale of alot more than I do, and I trully know that; but just this once I won't.

Wait a minute I'll handle this.....SHUT UP CONNIE!!! - There that works)

Whatever.....Not much I can do I guess; it's just that I deal better with what I know straight up and out in front of me. I hate sneak attacks.

Thank you Rose and all of you for all your help, grief I don't know what I would do if I couldn't ask someone some of the questions that are going through my head, and let some of the pain & steam off. I avoid saying to much of anything at home, my family worries and it just makes them upset & I can't stand to be the cause of that.

Thank you from the bottom of my heart..........Sincerely, ConnieRose <mamadogrose (AT) hotmail (DOT) com> wrote:

Diane, I have bilateral hearing loss, the left ear went 6 months after the right one. Ron also has hearing loss and I know there are others. I also have trouble with the higher pitches. I had hearing aids for both ears, but lost the right one last year. When I bought them in 1999-2000, they were $1600 each. Now it would cost $2200 for a comparable aid and more like $2600+ for the newer ones. My insurance didn't pay anything on mine and of course Medicare doesn't cover them, so unless I inherit some money or something, I'll just go with the one. They do help quite a lot, especially when I had both! The problem for me is that by having to amplify the higher tones so I can hear them is that it amplifies everything, including those little kids! Ohhhh, I can't stand to hear little kids crying or screaming; I have to turn my hearing aid off.

Why do your doctors say sarc didn't cause the hearing loss? What kind of doctors are they, anyway? The auditory nerves are favorite targets of sarc. This is from the Medline article on neurosarcoidosis (in Links):

Neurosarcoidosis may affect any part of the nervous system. Sudden, transient facial palsy (facial weakness) is common with involvement of cranial nerve VII. Any nerve can be affected, including the nerves of the eye and the nerves that control taste, smell, or hearing.

Maybe you can print that article out, along with some of the others that discuss hearing loss with NS. That headache episode along with the hearing loss sure sounds like something going on in your central nervous system, doesn't it? I think most doctors now are just so dependent on technology that they don't trust themselves to make a diagnosis without test results to back it up. Actually, when I had the second ear go kaput, the big concern was MS; I had an MRI to rule that out. Nobody thought of NS, even though I'd had a positive lymph node biopsy 5 years earlier. I've always wondered what an ACE level would have been back then.

Diane, doesn't it stink that insurance doesn't cover something as basic & important as hearing loss? One thing you might check into is a reconditioned aid. My audiologist has one that is essentially the same as the one I have; I can get it for $500, but I don't have the $500. She's going to hold it for me for awhile, but between heartworm treatment for my Annie dog and a wheel bearing for my car, there doesn't seem to be any extra money floating around.

BTW, I do have the Ad-Aware/Lavasoft program & Avast Anti-virus. They are very good, but I haven't figured out a way to get them to run automatically, so I have to remember to do it.

Ramblin' Rose

Moderator

From: "Diane Aja" <dianeaja (AT) comcast (DOT) net>Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Re: (Rose)Misc. answers & comments - hearing lossDate: Tue, 15 Aug 2006 23:40:20 -0500

Hi Rose,

Good to see your back in action again with ole Sparky!

Hey I see you said you lost your hearing in your right ear 7 years ago? I started losing my hearing about 9 years ago in both ears equally. I've completely lost the high pitched hearing in both ears now. All docs tell me it has nothing to do with the sarc. I say it's a bunch of malarky! Ever since I was diagnosed with the sarc I told them all it was from that. If my memory serves me correct (which would be a miracle!), someone else in the group mentioned hearing loss? How do they see it's caused from the sarc? Right before the hearing loss they thought I had a brain tumor because I had a 24/7 migraine headache for over 3 months straight. I was in California at the time and had horrible docs. By the time I was at the tail end of the headache they finally did a CT scan and found nothing. I believe an MRI would have showed them something. They might have seen some the beginning of my sarc that started my hearing loss. Guess it doesn't really matter now does it? It will always be a question in my mind as to when it all actually started for sure.

Do you have a hearing aid? If so does it help? Having the hearing loss that I do, it's very difficult to hear certain people talk, especially little kids. I had hearing aids made and paid for by insurance 7 years ago, but they are worthless today. They are computerized and way outdated and no program anymore to fix them. Now this insurance won't even give me a hearing test if you have health related hearing loss! You'd think that's when they would right? Oh well.

Rose, I hope you're doing good and your computer stays healthy. Tracie is right, you should use AVG and the SPY ware stuff. I use both of those programs faithfully. Mine stays healthy.

Hugs and Blessings!

Diane in TX

Yeah, Connie, I knew that. I thought they retired it after it malfunctioned & set some guy's hair on fire. I named my computer Sparky a few years ago because it kept doing weird things that my computer geek friends had never seen. I said it was probably going to blow up in my face one day, which it hasn't, but it keeps doing weird things. But hey, it's still going after 6+ years.

You know what--I just realized that it's been 7 years since NS sneaked up on me & wiped out the hearing in my right ear. Of course, at the time no one realized it was NS. NS, hinky computer . . . . . coincidence? I think not.

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Misc. answers & commentsDate: Tue, 15 Aug 2006 20:21:59 -0700 (PDT)

Hey Rose,Do you happen to know who "ol sparky" is in Florida?Gracious girl, it's the electric chair at raifordprison. Me thinks it's time to rename the computer. (forgive me i'm feeling mischievious - but that reallyis that things name) Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------I've been reading the mail but couldn't respond for acouple of days; ol' Sparky was having one of his fits.Finally got him scanned & plucked (couple of viruses) & now I can type! Before when I tried to typeanything, weird stuff would come up on the screen & Iwould lose my email. Seems okay now though. Soinstead of individual messages, y'all are getting onebig one!Ron, I agree with everyone else about the toe jam. You know that you should be checking those suckersevery day, don't you? Use a mirror if you aren'tagile enough to see the bottoms of your feet. Otay? Otay!, you go girl! You are right, that kind ofnews perks everybody up! You deserve good things inyour life. And you'll get free vet care. Angie & Diane, good to meet another camper from CampBaughman! I just saw him in July. A few months ago Itried to get everybody who sees him to coordinate ourvisits so we could have a party, but couldn't get itdone. Diane, if Cincinnati is a tad far for you to gofor regular visits, see if you can make it for aconsultation visit. Baughman is willing to work withyour local doctors, as long as they have any sense. Angie, where is Lancaster?Tracie, does a person have to be "normal" to help withthe "normal" chats? I might not be eligible. I'mgoing to try very hard to make the faith chat on Wed.,and I'll try really hard to make the "normal" chat onThurs. The only catch there is that my cousin Lulu iscoming from San Diego with at least 2 of her kids, andshe might be getting in Thurs. evening. If so, Idoubt I'll make it to the chat. But I am putting asticky note on the computer right now to remindmyself!Quint, my memory must have failed me about the grits & ants. I'm sorry, Godfather. Please don't punish me! Wayne, welcome to the group! We are always glad whenpeople find us; just wish it was for another reason. Do you mind a few questions? Where do you live? Areyou working? How long have you had symptoms? Howwere you diagnosed & do you feel comfortable with yourhealth care providers? How is the NS affecting younow? Do you have good family support? Are you a Cubsfan? (slipped that one in to see if you were stillawake!) Don't worry if responses are a little slow;we are all sick ourselves & sometimes it takes awhileto answer.Hey to Marla, Connie, Barb, , , ,, Matt & anybody I left out!A big cyber hug to Darlene & family! So glad that youare doing better. Hope you are back with us soon. Ramblin' RoseModerator---------------------------------Get real-time traffic reports with Windows Live LocalSearch __________________________________________________

August 18, 2006

Hi Rose, My primary is one of the good guys, but is a little scared of me and farms me out to approx. 9 different specialists. The cardiologist is frustrated right now because he can't figure out the extreme swelling - even though he has righteous documentation. I am part of a program called cardiocom, my ins put a high tech scale connected to a computer that asks questions & records the extreme weight variances. Diuretics only work at night when I lay down and get still and quiet. I have lost 8lbs in 8 hrs per the high tech (you weigh every morning, same clothes, before eating, etc.) after taking the diuretic, but I get no sleep when I do this. Then I have to try to drive to work and work all day when I am so tired I want to cry. The diuretics do not work during the day, we trying changing but it doesn't help. I went fm lasix to dimedex. The irregular rhythm is probably my little

friends, according to the dr that did the last arteriogram, it's that blankety blank sarcoid. I see the pulmonologist Monday, I'm afraid he is going to want to go up on the roids because I am having to many problems right now. The last time I coughed like this my bronchial tubes were full of granulomas - or as he put it "you were a very sick girl". He is totally pred when it comes to sarc, but the side affects at the higher doses tear me up. The neuro-psychologist did send his report to my neuro along with the recommendations, etc. But he just sort of pasted it off, because of the ACE. How much more damage in 6 mths? The neuro-psy says I'm good at working around and compensating for the glitches, but how long am I going to be able to do this? There are sarc specialist in ville at Mayo, but they don't accept my insurance even though my insurance will pay them because I

don't have access to a doctor that belongs to them. That's how I saw the neuro-psychologist, AvMed didn't have one so they did an exception and paid him to see me. Mayo refuses to accept this, and told me I could pay them cash and let my insurance reimburse me. Needless to say I don't even have that kind of money, and there is no where to get it. It'll all come out in the wash though, & I will persevere. Thanks for the answers, I had not thought about who could straighten out my ears, I just deal with it. Thanks again.....ConnieRose wrote: Connie, do you have a primary care doc (who's not listed on idiotsmoronsbozosMD.com) that can evaluate the b/p, swelling, heart stuff,etc? How about a pulmonologist to evaluate your breathing? An ENT to check your tinnitis (aks crickets. Do they sing in harmony? I love Southern Gospel.) Is the neuropsych guy going to send these results to your neurologist? The neurologist said to call if things got worse, right? Well, channel Helen Reddy and let him know you are worse, your work is suffering & you need an appt. Remember, "I am Woman! Hear me roar!" I forget if you've seen a sarc specialist or live near one. Think of a friend or relative who could & would be an advocate for you; help you do these things that you are

hesitant to do for yourself. They don't have to be in the health care field; just be intelligent, curious, willing to confront bullshit, and have your best interest in mind. Let me know how things go in the next few days. Ramblin' Rose Moderator From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: (Rose)Misc. answers & comments

- hearing lossDate: Thu, 17 Aug 2006 15:49:32 -0700 (PDT) Rose, I have some questions if you don't mind. My neurologist sent me to a neuro-psychologist for the testing. Found out I do have memory loss problems, some impairment of my dominant right hand, etc. (I haven't gotten to read the report for myself yet, but the neuro-psy went over the hightlights with me). The spinal tap didn't show some inflammatory process the neurologist was looking for but my albumin is not right and I think he said something else was not right. He said my blood work wasn't in there, but when I started to leave the girl just said he missed it. He has never done a gallium scan, but won't right now, he says because the ACE is not high in the spinal tap. But then he said that a positive gallium and elevated ACE are definitive

diagnosis makers of neurosarc. To my knowledge, even when they thought I had a major case of lymphoma, hugh lymphs nodes/hilar, etc & biopsied positive for sarc, I didn't have abnormal ace. Does taking prednisone everyday scew an ACE test? I don't want anymore trouble, but something isn't right - the neuropsychologist talked very straight forward to me and told me I would get worse. OK so what is up. Have you got any ideas, the neurologist told me he would see me in 6 mths, and to let him know if it got worse. He said he was not comfortable treating anything without definitely knowing because of side affects. My headaches are getting worse, my memory is getting to to be a torment especially at work, my speech problems seem to be increasing, I have these wierd shooting pains in my head, in my feet, my chest and 65 crickets singing in my ears. My breathing again appears to be deteriorating with

that wierd little coughing for no reason every little bit and my heart is acting like a crazy, miswired piece of junk, i'm swelling to beat the band (I'm a solid 4+ edema & I know how to measure that), my bp is going up even though i'm on (2) heart meds, and my joints feel like a painful rigomortis is trying to set in. (Please excuse the venting here, it's just kinda getting on my last nerve right now - I started to erase all of this, because I can name dozens of you that go through a whale of alot more than I do, and I trully know that; but just this once I won't. Wait a minute I'll handle this.....SHUT UP CONNIE!!! - There that works) Whatever.....Not much I can do I guess; it's just that I deal better with what I know straight up and out in front of me. I hate sneak attacks. Thank you Rose and all of you for all

your help, grief I don't know what I would do if I couldn't ask someone some of the questions that are going through my head, and let some of the pain & steam off. I avoid saying to much of anything at home, my family worries and it just makes them upset & I can't stand to be the cause of that. Thank you from the bottom of my heart..........Sincerely, ConnieRose <mamadogrose (AT) hotmail (DOT) com> wrote: Diane, I have bilateral hearing loss, the left ear went 6 months after the right one. Ron also has hearing loss and I know there are others. I also have trouble with the higher pitches. I had hearing aids for both ears, but lost the right one last year. When I bought them in 1999-2000, they were $1600 each. Now it

would cost $2200 for a comparable aid and more like $2600+ for the newer ones. My insurance didn't pay anything on mine and of course Medicare doesn't cover them, so unless I inherit some money or something, I'll just go with the one. They do help quite a lot, especially when I had both! The problem for me is that by having to amplify the higher tones so I can hear them is that it amplifies everything, including those little kids! Ohhhh, I can't stand to hear little kids crying or screaming; I have to turn my hearing aid off. Why do your doctors say sarc didn't cause the hearing loss? What kind of doctors are they, anyway? The auditory nerves are favorite targets of sarc. This is from the Medline article on neurosarcoidosis (in Links): Neurosarcoidosis may affect any part of the nervous system. Sudden, transient facial palsy (facial weakness) is common with involvement of cranial nerve VII. Any nerve can be affected, including the nerves of the eye and the nerves that control taste, smell, or hearing. Maybe you can print that article out, along with some of the others that discuss hearing loss with NS. That headache episode along with the hearing loss sure sounds like something going on in your central nervous system, doesn't it? I think most doctors now are just so dependent on technology that they don't trust themselves to make a diagnosis without test results to back it up. Actually, when I had the second ear go kaput, the big concern was MS; I had an MRI to rule that out. Nobody thought of NS, even though I'd had a positive lymph node biopsy 5

years earlier. I've always wondered what an ACE level would have been back then. Diane, doesn't it stink that insurance doesn't cover something as basic & important as hearing loss? One thing you might check into is a reconditioned aid. My audiologist has one that is essentially the same as the one I have; I can get it for $500, but I don't have the $500. She's going to hold it for me for awhile, but between heartworm treatment for my Annie dog and a wheel bearing for my car, there doesn't seem to be any extra money floating around. BTW, I do have the Ad-Aware/Lavasoft program & Avast Anti-virus. They are very good, but I haven't figured out a way to get them to run automatically, so I have to remember to do it. Ramblin' Rose Moderator From: "Diane Aja" <dianeaja (AT) comcast (DOT) net>Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Re: (Rose)Misc. answers & comments - hearing lossDate: Tue, 15 Aug 2006 23:40:20 -0500 Hi Rose, Good to see your back in action again with ole Sparky! Hey I see you said you

lost your hearing in your right ear 7 years ago? I started losing my hearing about 9 years ago in both ears equally. I've completely lost the high pitched hearing in both ears now. All docs tell me it has nothing to do with the sarc. I say it's a bunch of malarky! Ever since I was diagnosed with the sarc I told them all it was from that. If my memory serves me correct (which would be a miracle!), someone else in the group mentioned hearing loss? How do they see it's caused from the sarc? Right before the hearing loss they thought I had a brain tumor because I had a 24/7 migraine headache for over 3 months straight. I was in California at the time and had horrible docs. By the time I was at the tail end of the headache they finally did a CT scan and found nothing. I believe an MRI would have showed them something. They might have seen some the beginning of my sarc that started my hearing loss.

Guess it doesn't really matter now does it? It will always be a question in my mind as to when it all actually started for sure. Do you have a hearing aid? If so does it help? Having the hearing loss that I do, it's very difficult to hear certain people talk, especially little kids. I had hearing aids made and paid for by insurance 7 years ago, but they are worthless today. They are computerized and way outdated and no program anymore to fix them. Now this insurance won't even give me a hearing test if you have health related hearing loss! You'd think that's when they would right? Oh well. Rose, I hope you're doing good and your computer stays healthy. Tracie is right, you should use AVG and the SPY ware stuff. I use both of those programs faithfully. Mine stays healthy. Hugs and Blessings! Diane in TX Yeah, Connie, I knew that. I thought they retired it after it malfunctioned & set some guy's hair on fire. I named my computer Sparky a few years ago because it kept doing weird things that my computer geek friends had never seen. I said it was probably going to blow up in my face one day, which it hasn't, but it keeps doing weird things. But hey, it's still going after 6+

years. You know what--I just realized that it's been 7 years since NS sneaked up on me & wiped out the hearing in my right ear. Of course, at the time no one realized it was NS. NS, hinky computer . . . . . coincidence? I think not. Ramblin' Rose Moderator From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re:

Misc. answers & commentsDate: Tue, 15 Aug 2006 20:21:59 -0700 (PDT) Hey Rose,Do you happen to know who "ol sparky" is in Florida?Gracious girl, it's the electric chair at raifordprison. Me thinks it's time to rename the computer. (forgive me i'm feeling mischievious - but that reallyis that things name) Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------I've been reading the mail but couldn't respond for acouple of days; ol' Sparky was having one of his fits.Finally got him scanned & plucked (couple of viruses) & now I can type! Before when I tried to typeanything, weird stuff would come up on the screen & Iwould lose my email. Seems okay now though. Soinstead of individual messages, y'all

are getting onebig one!Ron, I agree with everyone else about the toe jam. You know that you should be checking those suckersevery day, don't you? Use a mirror if you aren'tagile enough to see the bottoms of your feet. Otay? Otay!, you go girl! You are right, that kind ofnews perks everybody up! You deserve good things inyour life. And you'll get free vet care. Angie & Diane, good to meet another camper from CampBaughman! I just saw him in July. A few months ago Itried to get everybody who sees him to coordinate ourvisits so we could have a party, but couldn't get itdone. Diane, if Cincinnati is a tad far for you to gofor regular visits, see if you can make it for aconsultation visit. Baughman is willing to work withyour local doctors, as long as they have any sense. Angie, where is Lancaster?Tracie, does a person have to be "normal" to help withthe "normal" chats? I

might not be eligible. I'mgoing to try very hard to make the faith chat on Wed.,and I'll try really hard to make the "normal" chat onThurs. The only catch there is that my cousin Lulu iscoming from San Diego with at least 2 of her kids, andshe might be getting in Thurs. evening. If so, Idoubt I'll make it to the chat. But I am putting asticky note on the computer right now to remindmyself!Quint, my memory must have failed me about the grits & ants. I'm sorry, Godfather. Please don't punish me! Wayne, welcome to the group! We are always glad whenpeople find us; just wish it was for another reason. Do you mind a few questions? Where do you live? Areyou working? How long have you had symptoms? Howwere you diagnosed & do you feel comfortable with yourhealth care providers? How is the NS affecting younow? Do you have good family support? Are you a Cubsfan? (slipped that one in to see if you

were stillawake!) Don't worry if responses are a little slow;we are all sick ourselves & sometimes it takes awhileto answer.Hey to Marla, Connie, Barb, , , ,, Matt & anybody I left out!A big cyber hug to Darlene & family! So glad that youare doing better. Hope you are back with us soon. Ramblin' RoseModerator---------------------------------Get real-time traffic reports with Windows Live LocalSearch __________________________________________________

August 18, 2006

Found out I do have memory loss problems, some impairment of my dominant right hand, etc.

This will make it easier to get the SSDI if you find you can no longer work. Most jobs aren't too effective when it starts taking 3 or more trips just to get the inkpen, then the paper, then the envelopes, then the customer's name, then ask (again) why they called-- hmmm-- can we say fired.

The spinal tap didn't show some inflammatory process the neurologist was looking for but my albumin is not right and I think he said something else was not right.

Connie, as you know- he was looking for the bands of protein that signify MS. The fact that those aren't there is good- it means you don't have MS-- but it isn't telling him you have NS either. Also, since you are on Prednisone-- that can lower the ACE levels--and so the fact that you don't at this time have inflammation in the spinal fluid- doesn't mean you don't have it in other areas.

He said my blood work wasn't in there, but when I started to leave the girl just said he missed it.

I'd be getting on the phone with him, (first have them fax you a copy so that you can be looking at it) and make him go over it with you. She should have taken you back into the room- and pointed the lab out to him-- so that it could have been covered then.

Also, with the spinal fluid, they should have run IGg, IGe, and ANA tests. These tell them if we have Lymes, or some other forms of autoimmune disease that they're missing altogether.

He has never done a gallium scan, but won't right now, he says because

the ACE is not high in the spinal tap. But then he said that a positive gallium and elevated ACE are definitive diagnosis makers of neurosarc.

Gallium scans and ACE are both signifiers of systemic inflammation, and the Gallium just tells them where there may be some whitecell or lymph infiltrates-- it doesn't tell them why there is infilitration- or what that infiltration is. Since you already have biopsy proven sarc-- then they can Deduct that it's probably sarcoidosis-- (and should deduct it from that fact),

To my knowledge, even when they thought I had a major case of lymphoma, hugh

lymphs nodes/hilar, etc & biopsied positive for sarc, I didn't have abnormal ace. Does taking prednisone everyday scew an ACE test?

YES!!!!!

I don't want anymore trouble, but something isn't right - the neuropsychologist

talked very straight forward to me and told me I would get worse. OK so what is up. Have you got any ideas, the neurologist told me he would see me in 6 mths, and to let him know if it got worse. He said he was not comfortable treating anything without definitely knowing because of side affects.

Get him (Neuropsych) the info from the ARCHIVES on NS. You need treatment, and waiting another 6 months is bullshit. These guys need to stop the "comfort zone" thing-- and get you on a prednisone alternative.

My headaches are getting worse, my memory is getting to to be a torment especially at work, my speech problems seem to be increasing, I have these wierd shooting pains in my head, in my feet, my chest and 65 crickets singing in my ears. My breathing again appears to be deteriorating with that wierd little coughing for no reason every little bit and my heart is acting like a crazy, miswired piece of junk, i'm swelling to beat the band (I'm a solid 4+ edema & I know how to measure that), my bp is going up even though i'm on (2) heart meds, and my joints feel like a painful rigomortis is trying to set in. (Please excuse the venting here, it's just kinda getting on my last nerve right now - I started to erase all of this, because I can name dozens of you that go through a whale of alot more than I do, and I trully know that; but just this once I won't.

Wait a minute I'll handle this.....SHUT UP CONNIE!!! - There that works)

Connie, this is nuts. You have to speak up. You don't have to do this alone-- none of us need to do it alone, and we actually create more problems by not allowing our families in. They want to understand, and help you. They just don't know how.

Methotrexate, Imuran, Arava, Enbrel, Humira, Plaquenil (which is very effective for the lung involvement) are all other choices. It will take a combination of meds to get you back undercontrol. But it's possible.

The edema you're talking about is not only heart/lung related--it is a very significant sign that the prednisone is doing more harm than good.

Pred makes us retain water-- your heart is beating irregularly, probably due to some sarc spots on the heart muscle itself, but also if your breathing is screwed up- and your wheezing and coughing, and short of breath, then your heart is saying it needs more oxygen, so it's pumping harder, yet working less effectively.

The lungs are suffering from scarring and inflammation, so the air you breath in isn't getting across the lung tissue to be picked up by the red blood cells, where it goes back to the heart and out to the body as oxygen --and the air is getting trapped in your lungs. It turns to carbon dioxide, and you end up hyperventiling. Then the numbness, tingling, burning sensations increase, and the neuropathy increases.

After the years of steroids-- we end up with this additional cycles, and so it's time for pulmonologist to pull his head out of his arse and study up on multi-system sarc.

and I'm not getting down off my soapbox,

Tracie

NS co-owner/moderator

August 19, 2006

Connie,

Sometimes

when I’m reading others posts, I think didn’t I just write this

myself? Know what I mean, and then I realized no, it’s not me this time,

but the words are all so familiar. I had many of the same things you wrote

about and had a Doc, Neuro that said the same thing, but I kept at them because

I knew that I needed more treatment, not someone trying to tell me I’m

not sick enough. I know they are weighing the possible side effects vs. no

treatment. I finally told my doc to give me wavier releasing him from the responsibility

of something happening because I am on the medication. That was when he said,

OK it’s time to treat, and I didn’t have to sign anything. I started

with Neuro symptoms in Aug, and didn’t get on a different treatment until

May, it was very discouraging, but I’m glad I kept at them. He put me on

Methotrexate, it took a few months to notice a difference but it did, I have

now been on the medication for 2 ½ years. Do I still have problems and

symptoms yes, but still I am much better, and glad I didn’t give up. I

was told it was depression, of which I was already being treated for, anyway

don’t give up, checking back with the doctor in 6 months is crazy, stay

on top of things. You are in my prayers.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis

Sent: Thursday, August 17, 2006

3:50 PM

To: Neurosarcoidosis

Subject: Re:

(Rose)Misc. answers & comments - hearing loss

Rose,

I have some questions if you don't mind. My neurologist sent me

to a neuro-psychologist for the testing. Found out I do have memory loss

problems, some impairment of my dominant right hand, etc. (I haven't gotten

to read the report for myself yet, but the neuro-psy went over the hightlights

with me). The spinal tap didn't show some inflammatory process the

neurologist was looking for but my albumin is not right and I think he said

something else was not right. He said my blood work wasn't in there, but

when I started to leave the girl just said he missed it. He has never

done a gallium scan, but won't right now, he says because the ACE is not high

in the spinal tap. But then he said that a positive gallium and

elevated ACE are definitive diagnosis makers of neurosarc. To my

knowledge, even when they thought I had a major case of lymphoma, hugh lymphs

nodes/hilar, etc & biopsied positive for sarc, I didn't have abnormal

ace. Does taking prednisone everyday scew an ACE test? I don't want

anymore trouble, but something isn't right - the neuropsychologist talked very

straight forward to me and told me I would get worse. OK so what is up.

Have you got any ideas, the neurologist told me he would see me in 6 mths, and

to let him know if it got worse. He said he was not comfortable treating

anything without definitely knowing because of side affects.

My headaches are getting worse, my memory is getting to to be a torment

especially at work, my speech problems seem to be increasing, I have these

wierd shooting pains in my head, in my feet, my chest and 65 crickets singing

in my ears. My breathing again appears to be deteriorating with that

wierd little coughing for no reason every little bit and my heart is acting

like a crazy, miswired piece of junk, i'm swelling to beat the band (I'm a

solid 4+ edema & I know how to measure that), my bp is going up even

though i'm on (2) heart meds, and my joints feel like a painful rigomortis

is trying to set in. (Please excuse the venting here, it's just

kinda getting on my last nerve right now - I started to erase all of this,

because I can name dozens of you that go through a whale of alot more than I

do, and I trully know that; but just this once I won't.

Wait a minute I'll handle this.....SHUT UP CONNIE!!! - There that

works)

Whatever.....Not much I can do I guess; it's just that I deal

better with what I know straight up and out in front of me. I hate sneak

attacks.

Thank you Rose and all of you for all your help,

grief I don't know what I would do if I couldn't ask someone some of the

questions that are going through my head, and let some of the pain & steam

off. I avoid saying to much of anything at home, my family worries and it

just makes them upset & I can't stand to be the cause of that.

Thank you from the bottom of my heart..........Sincerely, Connie

Rose

<mamadogrose (AT) hotmail (DOT) com> wrote:

Diane, I have bilateral hearing loss, the left ear went 6 months after

the right one. Ron also has hearing loss and I know there are

others. I also have trouble with the higher pitches. I had hearing

aids for both ears, but lost the right one last year. When I bought them

in 1999-2000, they were $1600 each. Now it would cost $2200 for a

comparable aid and more like $2600+ for the newer ones. My insurance

didn't pay anything on mine and of course Medicare doesn't cover them, so

unless I inherit some money or something, I'll just go with the one. They

do help quite a lot, especially when I had both! The problem for me is

that by having to amplify the higher tones so I can hear them is that it

amplifies everything, including those little kids! Ohhhh, I can't stand

to hear little kids crying or screaming; I have to turn my hearing aid off.

Why do your doctors say sarc didn't cause the hearing loss? What

kind of doctors are they, anyway? The auditory nerves are favorite

targets of sarc. This is from the Medline article on neurosarcoidosis (in

Links):

Neurosarcoidosis may affect any part of

the nervous system. Sudden, transient facial palsy (facial weakness) is common with

involvement of cranial nerve VII. Any nerve can be affected, including the

nerves of the eye and the nerves that control taste, smell, or hearing.

Maybe you can print that article out, along with some of the others

that discuss hearing loss with NS. That headache episode along with the

hearing loss sure sounds like something going on in your central nervous system,

doesn't it? I think most doctors now are just so dependent on technology

that they don't trust themselves to make a diagnosis without test results to

back it up. Actually, when I had the second ear go kaput, the big concern

was MS; I had an MRI to rule that out. Nobody thought of NS, even though

I'd had a positive lymph node biopsy 5 years earlier. I've always

wondered what an ACE level would have been back then.

Diane, doesn't it stink that insurance doesn't cover something as basic

& important as hearing loss? One thing you might check into is a

reconditioned aid. My audiologist has one that is essentially the same as

the one I have; I can get it for $500, but I don't have the $500. She's

going to hold it for me for awhile, but between heartworm treatment for my

Annie dog and a wheel bearing for my car, there doesn't seem to be any extra

money floating around.

BTW, I do have the

Ad-Aware/Lavasoft program & Avast Anti-virus. They are very good, but

I haven't figured out a way to get them to run automatically, so I have to

remember to do it.

Ramblin' Rose

Moderator

From: " Diane Aja " <dianeaja (AT) comcast (DOT) net>

Reply-To: Neurosarcoidosis

To: <Neurosarcoidosis >

Subject: Re: (Rose)Misc.

answers & comments - hearing loss

Date: Tue, 15 Aug 2006 23:40:20 -0500

Hi Rose,

Good to see your back in action again with ole Sparky!

Hey I see you said you lost your hearing in your right ear 7

years ago? I started losing my hearing about 9 years ago in both ears

equally. I've completely lost the high pitched hearing in both ears

now. All docs tell me it has nothing to do with the sarc. I say

it's a bunch of malarky! Ever since I was diagnosed with the sarc I told

them all it was from that. If my memory serves me correct (which would be

a miracle!), someone else in the group mentioned hearing loss? How do they

see it's caused from the sarc? Right before the hearing loss they thought

I had a brain tumor because I had a 24/7 migraine headache for over 3 months

straight. I was in California

at the time and had horrible docs. By the time I was at the tail end of

the headache they finally did a CT scan and found nothing. I believe an

MRI would have showed them something. They might have seen some the

beginning of my sarc that started my hearing loss. Guess it doesn't

really matter now does it? It will always be a question in my mind as to

when it all actually started for sure.

Do you have a hearing aid? If so does it help?

Having the hearing loss that I do, it's very difficult to hear certain people

talk, especially little kids. I had hearing aids made and paid for by

insurance 7 years ago, but they are worthless today. They are

computerized and way outdated and no program anymore to fix them. Now

this insurance won't even give me a hearing test if you have health related

hearing loss! You'd think that's when they would right? Oh well.

Rose, I hope you're doing good and your computer stays

healthy. Tracie is right, you should use AVG and the SPY ware

stuff. I use both of those programs faithfully. Mine stays

healthy.

Hugs and Blessings!

Diane in TX

Yeah, Connie, I knew that. I thought they retired it

after it malfunctioned & set some guy's hair on fire. I named my

computer Sparky a few years ago because it kept doing weird things that my

computer geek friends had never seen. I said it was probably going to

blow up in my face one day, which it hasn't, but it keeps doing weird things.

But hey, it's still going after 6+ years.

You know what--I just realized that it's been 7 years since

NS sneaked up on me & wiped out the hearing in my right ear. Of course,

at the time no one realized it was NS. NS, hinky computer . . . . .

coincidence? I think not.

Ramblin' Rose

Moderator

From: Connie Griffis <conaugusta (AT) yahoo (DOT) com>

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: Re: Misc.

answers & comments

Date: Tue, 15 Aug 2006 20:21:59 -0700 (PDT)

Hey Rose,

Do you happen to know who " ol sparky " is in Florida?

Gracious girl, it's the electric chair at raiford

prison. Me thinks it's time to rename the computer.

(forgive me i'm feeling mischievious - but that really

is that things name) Connie

--- Rose <mamadogrose (AT) hotmail (DOT) com>

wrote:

---------------------------------

I've been reading the mail but couldn't respond for a

couple of days; ol' Sparky was having one of his fits.

Finally got him scanned & plucked (couple of viruses)

& now I can type! Before when I tried to type

anything, weird stuff would come up on the screen & I

would lose my email. Seems okay now though. So

instead of individual messages, y'all are getting one

big one!

Ron, I agree with everyone else about the toe jam.

You know that you should be checking those suckers

every day, don't you? Use a mirror if you aren't

agile enough to see the bottoms of your feet. Otay?

Otay!

, you go girl! You are right, that kind of

news perks everybody up! You deserve good things in

your life. And you'll get free vet care.

Angie & Diane, good to meet another camper from Camp

Baughman! I just saw him in July. A few months ago I

tried to get everybody who sees him to coordinate our

visits so we could have a party, but couldn't get it

done. Diane, if Cincinnati

is a tad far for you to go

for regular visits, see if you can make it for a

consultation visit. Baughman is willing to work with

your local doctors, as long as they have any sense.

Angie, where is Lancaster?

Tracie, does a person have to be " normal " to help with

the " normal " chats? I might not be eligible. I'm

going to try very hard to make the faith chat on Wed.,

and I'll try really hard to make the " normal " chat on

Thurs. The only catch there is that my cousin Lulu is

coming from San Diego

with at least 2 of her kids, and

she might be getting in Thurs. evening. If so, I

doubt I'll make it to the chat. But I am putting a

sticky note on the computer right now to remind

myself!

Quint, my memory must have failed me about the grits &

ants. I'm sorry, Godfather. Please don't punish me!

Wayne, welcome

to the group! We are always glad when

people find us; just wish it was for another reason.

Do you mind a few questions? Where do you live? Are

you working? How long have you had symptoms? How

were you diagnosed & do you feel comfortable with your

health care providers? How is the NS affecting you

now? Do you have good family support? Are you a Cubs

fan? (slipped that one in to see if you were still

awake!) Don't worry if responses are a little slow;

we are all sick ourselves & sometimes it takes awhile

to answer.

Hey to Marla, Connie, Barb, , , ,

, Matt & anybody I left out!

A big cyber hug to Darlene & family! So glad that you

are doing better. Hope you are back with us soon.

Ramblin' Rose

Moderator

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August 19, 2006

Marla, early on in the process I actually asked my neurologist if I had the right to choose my own poison. I think he was taken aback, but it made it clear to him that I knew exactly what the issues with treatment were & the dilemna continues today: take your chances with the sarc monster sneaking up on you with major organ involvement, or risk the possible side effects & complications of some pretty toxic drugs. My only advice is to find a doctor who respects your right to participate in your own health care decisions and educate yourself (or your advocate) so that your doctor recognizes that you are informed & aware of all the options.

I tried to find a Patients' Bill of Rights on the AMA (American Medical Assn.) website, but surprise! Not there. Lots of other groups--hospitals, various health care organizations, but not the AMA. I was going to paste it in here so Connie, or whoever else needed it, could print it out & take it to their docs for their edification. Anyway, couldn't find it, but I still think I remember one of the major medical associations adopting a Bill of Rights, and it included informed consent of treatment, along with alternatives. I'll keep looking.

Well, gotta wrap it up. I am so pooped. Went to the Indiana State Fair today with my California cousin, her 2 kids, and my darling grandchildren & . Now we are all camping in my little house until Sunday pm. Have a good Sunday. (if nothing else, have a real sundae, as in ice cream!)

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: (Rose)Misc. answers & comments - hearing lossDate: Sat, 19 Aug 2006 19:40:45 -0700

Connie,

Sometimes when I’m reading others posts, I think didn’t I just write this myself? Know what I mean, and then I realized no, it’s not me this time, but the words are all so familiar. I had many of the same things you wrote about and had a Doc, Neuro that said the same thing, but I kept at them because I knew that I needed more treatment, not someone trying to tell me I’m not sick enough. I know they are weighing the possible side effects vs. no treatment. I finally told my doc to give me wavier releasing him from the responsibility of something happening because I am on the medication. That was when he said, OK it’s time to treat, and I didn’t have to sign anything. I started with Neuro symptoms in Aug, and didn’t get on a different treatment until May, it was very discouraging, but I’m glad I kept at them. He put me on Methotrexate, it took a few months to notice a difference but it did, I have now been on the medication for 2 ½ years. Do I still have problems and symptoms yes, but still I am much better, and glad I didn’t give up. I was told it was depression, of which I was already being treated for, anyway don’t give up, checking back with the doctor in 6 months is crazy, stay on top of things. You are in my prayers.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Thursday, August 17, 2006 3:50 PMTo: Neurosarcoidosis Subject: Re: (Rose)Misc. answers & comments - hearing loss