Re: newly diagnosed and lots of questions/concerns

[Guest guest]

I was diagnosed with sarcoidosis one year ago (>40 nodules in my lungs) then last May started with neuro symptoms, but wasn't diagnosed with neurosarcoidosis until about a month ago. I have numbness and tingling on the right side of my face, both feet and legs, headaches, neck pain, blurry vision, dulled hearing, back pain, weakness in my legs, really bad fatigue, difficulty concentrating, no bowel or bladder sensation (no incontinence yet, but almost-just doing timed bathroom trips). I have taken prednisone off and on (more on than off) for the last year for my lungs. My neuro symptoms have gotten worse at times (last sept I couldn't walk or even wash my own hair). Now I can't work or drive. Oh yeah, I have dizziness and vertigo with no warning and once I had everything go black while I was driving but I was still awake (that's when I quit driving). A few days ago I started taking Plaquenil. It seems to be helping with the pain already. Any advice, suggestions, ideas of what's ahead? How to deal with the changes (I gained 40# with prednisone over the last year and before now I was never over weight), I have always been strong/leader/independent type person. Now can do very little of what I used to do. It sure would help to talk to someone who understands. My husband is very supportive. This is very hard on him and my 3 sons (11,13, and 17) but they are all very kind and loving. Thanks for listening! God bless all of you who are in this group and willing to support and help others. Thanks so much! It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

Welcome to the family, we all wish we could meet at the grocery store doing normal stuff- but since we have NS-- well, at least this is a good place to learn how to handle the challenges..

You asked what's ahead?

The best answer I can give you is that NS generally doesn't kill us-- at least not very fast. Many of us have been dealing with it for years, and if we get a combination of immunosupressants that work for us, we generally can slow the progression-- and that is a good thing.

I'm glad they've added Plaquenil to your regime. It does seem to help many of us with the "brain fog" issues, as well as the body pain.

The prednisone at this point is generally useless-- the side effects out weigh the benefits. Between the weight gain, the blood sugar issues, the mood swings, the boneloss-- it just seems to mask the symptoms more than suppress them.

What I've learned to tell my doctors when I describe the fatigue is that if they imagine the very worst case of pneumonia they've ever had-- and the exhaustion and fatigue of recovering from it; they can magnify that level of fatigue 5 times over, and it'd still be a step up. A huge step up.

Many of us have had to give up out jobs-- and if you can no longer work, file for your SSDI. Get friends to write a letter on your behalf explaining the changes they see happening. Keep good track of what you have changed and how you've adapted- put down what you can no longer do--- and focus on those issues.

(For SSDI purposes, don't focus on them for your daily life-- it'd drive you nuts.)

If you find you're having short term memory problems, put it down. If you can't walk without a cane, or are wheelchair confined-- put it down. Since you're having vision issues-- put it down. GET INTO THE OPHTHALMOLOGIST (MD) AND GET THAT ISSUE ADDRESSED!!!!

You will find that you have to pace yourself. Somedays when you get up and get your shower- then need that 3 hr nap-- that is okay. It happens. To all of us. I know how hard it is when the kids are young enough to need you to get them to and from their games and such-- but if you don't listen to your body-- it will force the issue on you.

You'll find so many posts on these issues and more in our ARCHIVES. We've also put together a huge LINK library where you can print out articles to share with your MD's. The address is at the bottom of this and every email that goes out thru the group.

Personally I swear by MSM powder for the "inside" the bone pains, and preach hydration and low sugar consumption for the neuropathy. It works!

i KNOW YOU'LL have so many questions and concerns, and that's what we do here. We hold hearts and hands and become family.

Sincerely,

Tracie

NS Co-owner/moderator

Any advice, suggestions, ideas of what's ahead? How to deal with the changes (I gained 40# with prednisone over the last year and before now I was never over weight), I have always been strong/leader/independent type person. Now can do very little of what I used to do. It sure would help to talk to someone who understands. My husband is very supportive. This is very hard on him and my 3 sons It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

>

> I was diagnosed with sarcoidosis one year ago (>40 nodules in my

> lungs) then last May started with neuro symptoms, but wasn't

> diagnosed with neurosarcoidosis until about a month ago. I have

> numbness and tingling on the right side of my face, both feet and

> legs, headaches, neck pain, blurry vision, dulled hearing, back pain,

> weakness in my legs, really bad fatigue, difficulty concentrating, no

> bowel or bladder sensation (no incontinence yet, but almost-just

> doing timed bathroom trips). I have taken prednisone off and on (more

> on than off) for the last year for my lungs. My neuro symptoms have

> gotten worse at times (last sept I couldn't walk or even wash my own

> hair). Now I can't work or drive. Oh yeah, I have dizziness and

> vertigo with no warning and once I had everything go black while I

> was driving but I was still awake (that's when I quit driving). A few

> days ago I started taking Plaquenil. It seems to be helping with the

> pain already. Any advice, suggestions, ideas of what's ahead? How to

> deal with the changes (I gained 40# with prednisone over the last

> year and before now I was never over weight), I have always been

> strong/leader/independent type person. Now can do very little of what

> I used to do. It sure would help to talk to someone who understands.

> My husband is very supportive. This is very hard on him and my 3 sons

> (11,13, and 17) but they are all very kind and loving. Thanks for

> listening! God bless all of you who are in this group and willing to

> support and help others. Thanks so much!

>

Dear CSA mom

My name is Kathy. I was diagnosed with he Sarc monster(neuro) seven years ago.

I had very few early semptoms. First were dizziness, pain and blurred vision.

It turned out that I had hydro septhalis (water on the brain). My neuro thinks

the Sarc may have triggered the hydro septhalis (hope I spelled it right).

The weekness in my muscles and joints came later. I also had My gall bladder

explode and meningitus which may also be related to the Sarc.

My one piece of advice is: UNDER NO CERCUMSTANCES SHOULD YOU

STOP WALKING EVERY DAY!!!!!!!!!.You have no Idea how much it hurts

to be unable to walk. No matter how much you want to rest,

or how much it hurts, Don't stop!!!!!!!!!!!!!!!!!!!! I would give anything

if I could stand and walk to the bathroom. Also do as much for yourself as you

can.

I know your family loves you and wants to help, but after a while, they

will start to resent your need for their help, and feel too guilty to say so.

If you don't keep up with your phycial theraphy, your weekness will increase.

So keep up! If you need help with your exersizes, nag, nag, nag! Its to

important

If you need to talk, please e-mail me. Kathy_ceamoore @yahoo.com

Good Luck, Kathy

[Guest guest]

>

> I was diagnosed with sarcoidosis one year ago (>40 nodules in my

> lungs) then last May started with neuro symptoms, but wasn't

> diagnosed with neurosarcoidosis until about a month ago. I have

> numbness and tingling on the right side of my face, both feet and

> legs, headaches, neck pain, blurry vision, dulled hearing, back pain,

> weakness in my legs, really bad fatigue, difficulty concentrating, no

> bowel or bladder sensation (no incontinence yet, but almost-just

> doing timed bathroom trips). I have taken prednisone off and on (more

> on than off) for the last year for my lungs. My neuro symptoms have

> gotten worse at times (last sept I couldn't walk or even wash my own

> hair). Now I can't work or drive. Oh yeah, I have dizziness and

> vertigo with no warning and once I had everything go black while I

> was driving but I was still awake (that's when I quit driving). A few

> days ago I started taking Plaquenil. It seems to be helping with the

> pain already. Any advice, suggestions, ideas of what's ahead? How to

> deal with the changes (I gained 40# with prednisone over the last

> year and before now I was never over weight), I have always been

> strong/leader/independent type person. Now can do very little of what

> I used to do. It sure would help to talk to someone who understands.

> My husband is very supportive. This is very hard on him and my 3 sons

> (11,13, and 17) but they are all very kind and loving. Thanks for

> listening! God bless all of you who are in this group and willing to

> support and help others. Thanks so much!

>

Dear CSA mom

My name is Kathy. I was diagnosed with he Sarc monster(neuro) seven years ago.

I had very few early semptoms. First were dizziness, pain and blurred vision.

It turned out that I had hydro septhalis (water on the brain). My neuro thinks

the Sarc may have triggered the hydro septhalis (hope I spelled it right).

The weekness in my muscles and joints came later. I also had My gall bladder

explode and meningitus which may also be related to the Sarc.

My one piece of advice is: UNDER NO CERCUMSTANCES SHOULD YOU

STOP WALKING EVERY DAY!!!!!!!!!.You have no Idea how much it hurts

to be unable to walk. No matter how much you want to rest,

or how much it hurts, Don't stop!!!!!!!!!!!!!!!!!!!! I would give anything

if I could stand and walk to the bathroom. Also do as much for yourself as you

can.

I know your family loves you and wants to help, but after a while, they

will start to resent your need for their help, and feel too guilty to say so.

If you don't keep up with your phycial theraphy, your weekness will increase.

So keep up! If you need help with your exersizes, nag, nag, nag! Its to

important

If you need to talk, please e-mail me. Kathy_ceamoore @yahoo.com

Good Luck, Kathy

[Guest guest]

Kathy, Thank you so much for your encouragement and reply. I have been pushing myself, but sometimes I don't know if it's the right thing to do because the next day I can hardly move and the pain is waaaaay worse. I am glad to hear first hand from someone who knows that I should keep pushing. I am trying to learn how much is enough activity and not too much. Walking is always an effort. I told my husband today I am tempted to get my walker back out again because my legs are so tired, but my arms are so tired too that I don't know how much help it will be. It seems like listening to you guys that what took most of you 7-15 years is happening to me much faster. That's really scary. I don't want to be unable to walk or do things for myself and a burden on my family. I guess all I can do is exercise and push and keep walking huh? I don't go to physical therapy any more, I just do exercises at home. Getting a ride to the closest pt is hard. My

husband is working a ton to try to make ends meet since I can't work. I applied for disability in Oct. when I couldn't work and couldn't walk. Then I got better and went back to work part time in late Nov and cancelled my request for disability. Then in early Feb I was unable to work again so called them back and restarted the process. They said since I tried to go back to work that I had a better chance of getting approved. They said they consider it an unsuccessful work attempt. I sure hope I get approved because we really need the money and I definitely can't work. I will keep walking no matter how hard it is. Do you have any ideas on how not to lose bladder control? First I lost sensation on my skin in that area, then lost the feeling of needing to go to the bathroom so just started going to the bathroom frequently. Now if I don't go more frequently I start leaking a little. Did that happen to you? Thank you so much for listening and for your advice. I

appreciate this group more than I can say. You guys have helped me a ton more than any doctor. Hope you have a wonderful day! Cathykathy_ceamoore wrote: >> I was diagnosed with sarcoidosis one year ago (>40 nodules in my > lungs) then last May started with neuro symptoms, but wasn't > diagnosed with

neurosarcoidosis until about a month ago. I have > numbness and tingling on the right side of my face, both feet and > legs, headaches, neck pain, blurry vision, dulled hearing, back pain, > weakness in my legs, really bad fatigue, difficulty concentrating, no > bowel or bladder sensation (no incontinence yet, but almost-just > doing timed bathroom trips). I have taken prednisone off and on (more > on than off) for the last year for my lungs. My neuro symptoms have > gotten worse at times (last sept I couldn't walk or even wash my own > hair). Now I can't work or drive. Oh yeah, I have dizziness and > vertigo with no warning and once I had everything go black while I > was driving but I was still awake (that's when I quit driving). A few > days ago I started taking Plaquenil. It seems to be helping with the > pain already. Any advice, suggestions, ideas of what's ahead? How to > deal

with the changes (I gained 40# with prednisone over the last > year and before now I was never over weight), I have always been > strong/leader/independent type person. Now can do very little of what > I used to do. It sure would help to talk to someone who understands. > My husband is very supportive. This is very hard on him and my 3 sons > (11,13, and 17) but they are all very kind and loving. Thanks for > listening! God bless all of you who are in this group and willing to > support and help others. Thanks so much!>Dear CSA momMy name is Kathy. I was diagnosed with he Sarc monster(neuro) seven years ago.I had very few early semptoms. First were dizziness, pain and blurred vision. It turned out that I had hydro septhalis (water on the brain). My neuro thinks the Sarc may have triggered the hydro septhalis (hope I spelled it right). The weekness in my muscles and joints came

later. I also had My gall bladder explode and meningitus which may also be related to the Sarc. My one piece of advice is: UNDER NO CERCUMSTANCES SHOULD YOU STOP WALKING EVERY DAY!!!!!!!!!.You have no Idea how much it hurts to be unable to walk. No matter how much you want to rest, or how much it hurts, Don't stop!!!!!!!!!!!!!!!!!!!! I would give anything if I could stand and walk to the bathroom. Also do as much for yourself as you can.I know your family loves you and wants to help, but after a while, they will start to resent your need for their help, and feel too guilty to say so.If you don't keep up with your phycial theraphy, your weekness will increase. So keep up! If you need help with your exersizes, nag, nag, nag! Its to importantIf you need to talk, please e-mail me. Kathy_ceamoore @yahoo.comGood Luck, Kathy

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Kathy, Thank you so much for your encouragement and reply. I have been pushing myself, but sometimes I don't know if it's the right thing to do because the next day I can hardly move and the pain is waaaaay worse. I am glad to hear first hand from someone who knows that I should keep pushing. I am trying to learn how much is enough activity and not too much. Walking is always an effort. I told my husband today I am tempted to get my walker back out again because my legs are so tired, but my arms are so tired too that I don't know how much help it will be. It seems like listening to you guys that what took most of you 7-15 years is happening to me much faster. That's really scary. I don't want to be unable to walk or do things for myself and a burden on my family. I guess all I can do is exercise and push and keep walking huh? I don't go to physical therapy any more, I just do exercises at home. Getting a ride to the closest pt is hard. My

husband is working a ton to try to make ends meet since I can't work. I applied for disability in Oct. when I couldn't work and couldn't walk. Then I got better and went back to work part time in late Nov and cancelled my request for disability. Then in early Feb I was unable to work again so called them back and restarted the process. They said since I tried to go back to work that I had a better chance of getting approved. They said they consider it an unsuccessful work attempt. I sure hope I get approved because we really need the money and I definitely can't work. I will keep walking no matter how hard it is. Do you have any ideas on how not to lose bladder control? First I lost sensation on my skin in that area, then lost the feeling of needing to go to the bathroom so just started going to the bathroom frequently. Now if I don't go more frequently I start leaking a little. Did that happen to you? Thank you so much for listening and for your advice. I

appreciate this group more than I can say. You guys have helped me a ton more than any doctor. Hope you have a wonderful day! Cathykathy_ceamoore wrote: >> I was diagnosed with sarcoidosis one year ago (>40 nodules in my > lungs) then last May started with neuro symptoms, but wasn't > diagnosed with

neurosarcoidosis until about a month ago. I have > numbness and tingling on the right side of my face, both feet and > legs, headaches, neck pain, blurry vision, dulled hearing, back pain, > weakness in my legs, really bad fatigue, difficulty concentrating, no > bowel or bladder sensation (no incontinence yet, but almost-just > doing timed bathroom trips). I have taken prednisone off and on (more > on than off) for the last year for my lungs. My neuro symptoms have > gotten worse at times (last sept I couldn't walk or even wash my own > hair). Now I can't work or drive. Oh yeah, I have dizziness and > vertigo with no warning and once I had everything go black while I > was driving but I was still awake (that's when I quit driving). A few > days ago I started taking Plaquenil. It seems to be helping with the > pain already. Any advice, suggestions, ideas of what's ahead? How to > deal

with the changes (I gained 40# with prednisone over the last > year and before now I was never over weight), I have always been > strong/leader/independent type person. Now can do very little of what > I used to do. It sure would help to talk to someone who understands. > My husband is very supportive. This is very hard on him and my 3 sons > (11,13, and 17) but they are all very kind and loving. Thanks for > listening! God bless all of you who are in this group and willing to > support and help others. Thanks so much!>Dear CSA momMy name is Kathy. I was diagnosed with he Sarc monster(neuro) seven years ago.I had very few early semptoms. First were dizziness, pain and blurred vision. It turned out that I had hydro septhalis (water on the brain). My neuro thinks the Sarc may have triggered the hydro septhalis (hope I spelled it right). The weekness in my muscles and joints came

later. I also had My gall bladder explode and meningitus which may also be related to the Sarc. My one piece of advice is: UNDER NO CERCUMSTANCES SHOULD YOU STOP WALKING EVERY DAY!!!!!!!!!.You have no Idea how much it hurts to be unable to walk. No matter how much you want to rest, or how much it hurts, Don't stop!!!!!!!!!!!!!!!!!!!! I would give anything if I could stand and walk to the bathroom. Also do as much for yourself as you can.I know your family loves you and wants to help, but after a while, they will start to resent your need for their help, and feel too guilty to say so.If you don't keep up with your phycial theraphy, your weekness will increase. So keep up! If you need help with your exersizes, nag, nag, nag! Its to importantIf you need to talk, please e-mail me. Kathy_ceamoore @yahoo.comGood Luck, Kathy

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Cathy,

I wanted to say something about the bladder issues. I have developed a

neurogenic bladder; that is where somewhere between the brain and the

bladder the signals are getting lost or misdirected. Have you had any

testing of your bladder by a urologist? If not, that is the first place

to start. I got a great deal of info from mine. I think though that

your problems is opposite of mine. I don't leak urine, I can't get rid

of mine. I have to catheterize sometimes but right now I have some meds

that help. I do have a loss of sensation also.

If you haven't seen a urologist, I would suggest that you see one soon.

I started out leaking, but now I have gone the other way. You can get

medicine to help you with the incontinence.

Terri G.

Do you have any ideas on how not to lose bladder control? First I lost

sensation on my skin in that area, then lost the feeling of needing to

go to the bathroom so just started going to the bathroom frequently. Now

if I don't go more frequently I start leaking a little. Did that happen

to you?

>

[Guest guest]

Cathy,

I wanted to say something about the bladder issues. I have developed a

neurogenic bladder; that is where somewhere between the brain and the

bladder the signals are getting lost or misdirected. Have you had any

testing of your bladder by a urologist? If not, that is the first place

to start. I got a great deal of info from mine. I think though that

your problems is opposite of mine. I don't leak urine, I can't get rid

of mine. I have to catheterize sometimes but right now I have some meds

that help. I do have a loss of sensation also.

If you haven't seen a urologist, I would suggest that you see one soon.

I started out leaking, but now I have gone the other way. You can get

medicine to help you with the incontinence.

Terri G.

Do you have any ideas on how not to lose bladder control? First I lost

sensation on my skin in that area, then lost the feeling of needing to

go to the bathroom so just started going to the bathroom frequently. Now

if I don't go more frequently I start leaking a little. Did that happen

to you?

>

[Guest guest]

Terri, Thank you for responding. I did see a urologist several months ago when I lost all sensation to go. They were most concerned that my bladder was emptying completely. It was. He said I could take medicine and that incontinence would be probably the next thing to happen. Actually sometimes when I sit down to do it won't come for a long time, but so far every time I have eventually been able to go. He gave me supplies for self cath if I need to. I guess I should call him back and go back for a re-check since it's been quite a while since I went there. Thanks so much for caring and responding. This group is so imprortant to me. I was so scared and frustrated and lost before i found this group. I can't thank you enough!!!! Hope you have a good day! One more question, does the pain just continue to get worse typically? Plaquenil has helped me a lot. I really really don't want to take prednisone any more. I really hate it. I am weaned down to 10mg/day

now and i want to get off and not start it ever again. It makes me sick, shaky, can't sleep, puffy, etc etc. I don't want to be diabetic with osteoporosis too. (Osteoporosis runs in my family a lot). Thanks for listening! Have a good day! thanks again! Cathymosaicgirl1 wrote: Cathy,I wanted to say something about the bladder issues. I have developed aneurogenic bladder; that is where somewhere between the brain and thebladder the signals are getting lost or

misdirected. Have you had anytesting of your bladder by a urologist? If not, that is the first placeto start. I got a great deal of info from mine. I think though thatyour problems is opposite of mine. I don't leak urine, I can't get ridof mine. I have to catheterize sometimes but right now I have some medsthat help. I do have a loss of sensation also.If you haven't seen a urologist, I would suggest that you see one soon. I started out leaking, but now I have gone the other way. You can getmedicine to help you with the incontinence.Terri G.Do you have any ideas on how not to lose bladder control? First I lostsensation on my skin in that area, then lost the feeling of needing togo to the bathroom so just started going to the bathroom frequently. Nowif I don't go more frequently I start leaking a little. Did that happento you?>

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[Guest guest]

Terri, Thank you for responding. I did see a urologist several months ago when I lost all sensation to go. They were most concerned that my bladder was emptying completely. It was. He said I could take medicine and that incontinence would be probably the next thing to happen. Actually sometimes when I sit down to do it won't come for a long time, but so far every time I have eventually been able to go. He gave me supplies for self cath if I need to. I guess I should call him back and go back for a re-check since it's been quite a while since I went there. Thanks so much for caring and responding. This group is so imprortant to me. I was so scared and frustrated and lost before i found this group. I can't thank you enough!!!! Hope you have a good day! One more question, does the pain just continue to get worse typically? Plaquenil has helped me a lot. I really really don't want to take prednisone any more. I really hate it. I am weaned down to 10mg/day

now and i want to get off and not start it ever again. It makes me sick, shaky, can't sleep, puffy, etc etc. I don't want to be diabetic with osteoporosis too. (Osteoporosis runs in my family a lot). Thanks for listening! Have a good day! thanks again! Cathymosaicgirl1 wrote: Cathy,I wanted to say something about the bladder issues. I have developed aneurogenic bladder; that is where somewhere between the brain and thebladder the signals are getting lost or

misdirected. Have you had anytesting of your bladder by a urologist? If not, that is the first placeto start. I got a great deal of info from mine. I think though thatyour problems is opposite of mine. I don't leak urine, I can't get ridof mine. I have to catheterize sometimes but right now I have some medsthat help. I do have a loss of sensation also.If you haven't seen a urologist, I would suggest that you see one soon. I started out leaking, but now I have gone the other way. You can getmedicine to help you with the incontinence.Terri G.Do you have any ideas on how not to lose bladder control? First I lostsensation on my skin in that area, then lost the feeling of needing togo to the bathroom so just started going to the bathroom frequently. Nowif I don't go more frequently I start leaking a little. Did that happento you?>

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Cathy,

My pain is a little different because I also have a vitamin D deficiency

which cause bone pain anyway. I can always tell when it is time for my

supplement because the night before I take it, my pain level really goes

up. But I have good days and bad days just like everyone else here and

I just take it one day at a time.

Take care and the best you can.

Terri G.

>

> One more question, does the pain just continue to get worse typically?

[Guest guest]

Cathy,

My pain is a little different because I also have a vitamin D deficiency

which cause bone pain anyway. I can always tell when it is time for my

supplement because the night before I take it, my pain level really goes

up. But I have good days and bad days just like everyone else here and

I just take it one day at a time.

Take care and the best you can.

Terri G.

>

> One more question, does the pain just continue to get worse typically?

[Guest guest]

Thanks Terri! Have a great day! I am glad the vit D helps you!mosaicgirl1 wrote: Cathy,My pain is a little different because I also have a vitamin D deficiencywhich cause bone pain anyway. I can always tell when it is time for mysupplement because the night before I take it, my pain level really goesup. But I have good days and bad days just like everyone else here andI just take it one day at a time.Take care and the best you can.Terri G.>> One more question, does the pain just continue to get worse typically?

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[Guest guest]

Thanks Terri! Have a great day! I am glad the vit D helps you!mosaicgirl1 wrote: Cathy,My pain is a little different because I also have a vitamin D deficiencywhich cause bone pain anyway. I can always tell when it is time for mysupplement because the night before I take it, my pain level really goesup. But I have good days and bad days just like everyone else here andI just take it one day at a time.Take care and the best you can.Terri G.>> One more question, does the pain just continue to get worse typically?

Never miss a thing. Make Yahoo your homepage.