New to all this

[Guest guest]

Hi Molly,

I'm glad to hear that it took only 3 months and that MD's actually got together and found that you have NS.

I'm amazed that they are starting you on prednisone again. Do you have sarcoidosis anywhere else beside the neuro system?

You asked if we ever experience remissions. some of us have had remissions that have lasted several years. I will tell you though that once the MD's stop your prednisone, generally the sarc will come back-- and more than likely start effecting additional systems.

Prednisone is generally not effective long-term. The side effects of significant weight gain, the water retention, diabetes and osteoporosis it can cause is a downside.

Most of us are on a combination of immunosuppressants. Imuran, Methotrexate, Arava, Plaquenil, Enbrel, Humira and Remicade are all choices that are effective in multi-system and neurosarcoidosis. They all have their side effects-- and you do have to be very aware to take extra precautions if you're out in public. (Take a bottle of that hand sanitizer with you always.)

At the bottom of this and every email that goes out is a list with the site addresses for our ARCHIVES and LINKS.

You'll find a tremendous amount of information, and articles that you can print out and take to your MD's. You will find that you will be educating your MD's-- as very few have an understanding of NS.

We're a large group now-- over 400 people. We all have this disease, and are in various stages of sarcoidosis. If you don't get a reply for a day or so, know that you will hear from us. It's just that for some reason, all of the moderators and owners are in flare at the moment-- so we have to take our own advice and pace ourselves.

Welcome to group, no question to dumb or obvious. So ask away.

sincerely,

Tracie

NS co-owner/moderator

[Guest guest]

Hi Everyone,

I was diagnosed with neurosarcoidosis just this past week after 3

months of crazy, seemingly unconnected symptoms. The worst being

continuous vertigo...I finally found a neurologist who went the extra

mile and put his head together with my other doctors.

I just started another course of Prednisone, but this one will last at

least 2 months. Does anyone have any encouraging words or words of

wisdom to share with someone who's a little freaked out? Do most of

you experience recurrences? Thanks for listening, Lori

[Guest guest]

Hi, Tracie! You sure do keep odd hours - I emailed the group in the middle of the night: I work night shift as a Respiratory Therapist at a Denver hospital. Ironic, isn't it? I think probably the reason I got diagnosed in "only" (it felt like years!) 3 months is because I'm a hospital employee. They tend to look out for their own. Which is great by me. As for the Pred...the 1st time I took it was only for 5 days or so. They thought I had labyrinthitis and the Dr. overruled the PA and said it wasn't indicate. The 2nd time, i took the Pred for about 5 or 6 days only. And that was for the Bell's Palsy. It eventually resolved itself after 4 weeks. the THIRD time, was after the MRi which showed inflammation at the 7th and 8th cranial nerves. That was back in late may/early june. That course of Pred lasted 21 days. Since then I've been on nothing except some

natural supplements that I researched in books and on the internet. Then, last week I started having vision problems with my left eye. Though I had a detaching retina so I went to the ED where I work. That visit led to 2 Ophthalmology consults, a CT scan and a lumbar puncture and a neuro consult. And then, the resulting diagnosis....whew.... My chest X-ray was clear at this point, the neurologist said it's just neurosarcoid. He's got me on Fosamax and a Calcium and vitamin D supplement too. Reading your info, though, really makes me hope that my neurologist was wrong! It doesn't sound too pleasant. LOL. Not that the last 3 months have been a barrel full of monkeys. I wasn't able to work for 3 months and had no income except for the Grace of Mom. ANd I'm 44 years old. how humiliating. I've been easing back into work for the last 2 weeks. 3 - 4

hour shifts, then 2 - 8 hour shifts. but now i'm supposed to do 3 12 hour shift. My usual schedule. I've put in a request to go to days, but that could take months to get OKd. I still have the vertigo to a degree, but it's mostly complicated by my vision problem in my left eye: inflammation of the optic nerves, bilaterally. But the crappy vision hasn't spread to the right yet. yee ha. Thanksfor letting me bend your ear. i'll try to check out some of the links, etc before i go back to the doctor on tuesday... Oh, and I go by Lori...Molly is my dog!!! ) tiodaat@... wrote: Hi Molly,I'm glad to hear that it took only 3 months and that MD's actually got together and found that you have NS. I'm amazed that they are starting you on prednisone again. Do you have sarcoidosis anywhere else beside the neuro system?You asked if we ever experience remissions. some of us have had remissions that have lasted several years. I will tell you though that once the MD's stop your prednisone, generally the sarc will come back-- and more than likely start effecting additional systems.Prednisone is generally not effective long-term. The side effects of significant weight gain, the water retention, diabetes and osteoporosis it can cause is a

downside.Most of us are on a combination of immunosuppressants. Imuran, Methotrexate, Arava, Plaquenil, Enbrel, Humira and Remicade are all choices that are effective in multi-system and neurosarcoidosis. They all have their side effects-- and you do have to be very aware to take extra precautions if you're out in public. (Take a bottle of that hand sanitizer with you always.) At the bottom of this and every email that goes out is a list with the site addresses for our ARCHIVES and LINKS. You'll find a tremendous amount of information, and articles that you can print out and take to your MD's. You will find that you will be educating your MD's-- as very few have an understanding of NS. We're a large group now-- over 400 people. We all have this disease, and are in various stages of sarcoidosis. If you don't get a reply for a day or so, know that you will hear from us. It's just that for some

reason, all of the moderators and owners are in flare at the moment-- so we have to take our own advice and pace ourselves. Welcome to group, no question to dumb or obvious. So ask away. sincerely,TracieNS co-owner/moderator

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Lori and Molly (the dog),

You are in excellant teratory (sp) as Denver has one of the top sarcoidosis clinics anywhere in the states. I'm sure that helped with getting a quick diagnosis also.

When I was first diagnosed, it was my ophthalmologist that discovered bilateral iritis and figured that we had the answer to my chronic back pain. He figured I had anklyosing spondylitis - a form of arthritis that devours the triangle at the base of the spine crippling the patient-- or the "long shot" of sarcoidosis.

I too was working for MD's, and so within a short period of time, we knew it was pulmonary sarcoidosis and sarcoid induced iritis.

My pulm put me on prednisone at 80 mg a day, and it took 2 yrs to wean off it. I had a 5 year remission, then the sarc came back, and is now systemic and neuro along with Stage 4 pulm sarc-- so I have serious lung fibrosis.

Since you already have optical involvement and neurological signs-- the Bells Palsy was caused by sarc-- it loves that 7th cranial nerve, as well as the optic nerves-- I hate to see that they're going to do the prednisone.

Rarely when it's multiple systems does this go into remission. It may back off for awhile, then come back with more involvement--so you are probably looking at long term steroids.

As you know-- you can't just "stop" the prednisone, you will have to wean off it--as when you take pred, your body stops producing it's own cortisol, and the adrenals have to be retaught to produce it.

It is so very important to stay on top of the eyes-- when you have inflammation of the eyes, developing iritis and glaucoma is very serious. So if you're light sensitive, and feel like you're coming down with the flu-- get your eyes checked-- it is a sign of glaucoma.

Do be careful with the Fosamax and calcium/Vit D supplements. Sarcoidosis loves to take the calcium and put it where it doesn't belong.

They aren't sure of the correlation, but we seem to not process calcium or Vit D (the jury still is out on this) but your MD's should run a 24 hr urine and check the levels- so that you don't have problems with your kidneys down the road.

also, it is a thought that the sarcoid granulomas attract calcium and it's that they start as an over-abundance of white cells, then the TNF-a and TNF-B proteins that should clean the white cells out don't work right-- and form calcium granulomas (tumors) all over the place.

Do you have the sarcoid induced arthritis? How's the memory? How's your fatigue levels?

One of the biggest challenges is learning to listen to your body, and when you're tired-- don't push to exhausted, or you will keep this bugger in flare.

Take care of yourself, and know we're here - sometimes in the middle of the night. LOL! anyway, it's midnight in California, and I'm going to bed.

Blessings,

Tracie

NS co-owner/moderator

[Guest guest]

Hi, Lori and welcome to our family. Tracie pretty well covered all the bases on resources & links. I'm also impressed with the speed & efficiency of your diagnosis. Where do you live? I was also a hospital employee (and I think valued by my colleagues), but still required several years & multiple symptoms before diagnosis & treatment. I didn't notice in your story anything about a biopsy. Did your neurologist make the diagnosis without a biopsy positive for sarcoidosis anywhere? So many docs are unwilling to make the call even with a positive biopsy. I'll be honest with you regarding your comment that you're hoping the diagnosis is wrong; this is a horrible disease. But you seem to have hit the jackpot regarding diagnosis; sounds like your docs just need to be updated on current research on treatment options. I have added my story to the bottom of this message, if you are interested. There is a long version & a shorter one! I'm not called Ramblin' Rose for nothing! Again, welcome to the group.

Ramblin' Rose

Moderator

Brief intro: I am 57, divorced 10 yrs. after 22 yr. marriage. I have 3 grown kids, 30, 35 & 36. The youngest (a son) is married (now separated), with 2 stepkids. My girls are both divorced, with 5 kids between them. My oldest granddaughter, , has lived with me for 4 years. It's been a roller-coaster. She is not a bad kid, but makes incredibly bad choices. She just recently was returned to the Indiana Girls School (incarcerated) for parole violations. I am at the end of my rope with her. I don't want to cut the rope, but somebody is going to have to do something. Well, anyway, after about one year of med-surg nursing, then 10 years of labor & delivery, I became a nurse-midwife. I worked 2 years in Mississippi, then 4 in Texas, moved back to my home state of Indiana & worked 14 more years as a midwife before having to retire on disability. My last birth was my niece's baby boy, Trent, who just turned 3.

As my signatures indicates, I'm not often speechless. I will try very hard to condense this saga. You might want to just skip down to the *****. Anyway, in March of 1994 I had a lingering episode of atrial fibrillation (heart arrhythmia). While working me up for that, it was discovered that the hilar nodes in my chest were enlarged. I had no symptoms, other than the atrial fib, and my lungs were clear. They said it was probably sarcoidosis, but I needed a biopsy to be sure it wasn't lymphoma or something else "serious." The biopsy showed sarc, I had a lung function test, some blood tests, no sign of sarc by those, or by the cardiac echo for the arrhythmia. All my doctors told me that it usually goes away on its own & doesn't cause any problems. I had been an RN for 23 yrs. at that time, & had a vague recollection of hearing about sarc. I did a little research through our hospital medical library & read about all the awful places you could have sarc--eyes, heart, brain, etc. I was very grateful that I didn't have any of that, but didn't realize that it could pop up later in any of those places.

I went on my merry way. I had been a certified nurse-midwife for ten years then, working long hours, but loving it. In June of 1999 I had sudden hearing loss & vertigo in my right ear. My family doc said it was from a virus, no treatment would help & the hearing loss was permanent. He didn't send me to an ENT (ear doc; I don't know if you use the same abbreviations, so pardon me if I'm too repetitive.) because "there was nothing to be done." Well, I should have known better, but I believed him. Then in Nov. I had a Bell's palsy on the left side, which again was blamed on a virus, but this time I did some Internet research & found that treatment with Prednisone as well as Acyclivir was recommended at most centers. Ol' family doc didn't want to give me anything, because "80% of these just resolve on their own." I told him that was fine, but I didn't want to be one of the 20% stuck with permanent damage, wondering if the drugs would have helped. I badgered him until he ordered them. It resolved within two weeks. Meanwhile I did some research on sensorineural hearing loss, even talking to a doctor at the Univ. of Tennessee who was doing research on it. He was surprised that my family doctor didn't order Prednisone or at least send me to an ENT. He said a large number of patients regained some of their hearing if treated right away. This knowledge came in handy, because one month after the Bell's palsy, the hearing in my left ear went! No vertigo this time, but I was panicking. I had just gotten a hearing aid for the right ear ($1600--all out of my pocket) & was struggling to communicate with my patients. My doctor was out sick, so I asked an internist friend & he immediately called an ENT, plus set me up for a brain MRI the next day. This was just a few days before Christmas, so these were done as a personal favor to him. The ENT was surprised that I wasn't given Pred or an ENT referral with the first hearing loss and gave me a 10-day course of Prednisone. The MRI was normal--they were looking for MS. No one thought of neurosarcoidosis, including me. I got another hearing aid, and bumbled along for another year. The last day I felt normal was Halloween of 2000. I dressed as a hippie & ran all over the hospital with my flower child sign. The next day my eyes started itching intensely--no redness or discharge. I just wanted to run a hairbrush over the lids! Benadryl did nothing. The next day I started running a fever, feeling exhausted & weak. The itching gradually resolved, to be replaced by a feeling that I had cobwebs on my face. The fever left after a few days, but the fatigue never did! All my energy went into work & I took naps all the time at work. I lost a lot of weight because I just was too tired to eat. When I did eat, it was cereal, a sandwich or a microwave pot pie. I finally took some cans of Boost (protein drink) to work. At lunch break, I'd chug one down, then lie on the floor & sleep until the first afternoon patient was ready. I had every test run that they could think of, all negative. I had switched family docs before this all happened, after the ear stuff, but the new guy wasn't any better. He told me that there was nothing wrong with me that an hour on the treadmill every morning couldn't cure! Still, nobody connected anything to sarcoidosis. As the months passed & I was still sleeping more than I was awake, he kept telling me that it was a virus. I was so sick of hearing "It's just a virus!" Aaaaaaarrrrrrggggghhhhh! Anyway, I began tipping over, falling out of chairs, having tremors & was given a referral to a neurologist, who immediately suspected that I had NS. He was astonished that no one else had considered it. So he did another MRI, spinal tap & a bunch of nerve conduction exams. All normal! So he didn't want to treat me. I think he believed 100% in his heart & his head that it was NS, but he wanted some kind of lab test to confirm it. So a year passed, with another Bell's palsy on the left, which did not resolve completely. After working with a speech therapist, who used electrostimulation on my facial muscles, the residual damage is not noticeable to most people, but I can still tell. I can't close my left eye as tightly, etc. I also developed a nasty cough & saw a pulmonologist. A chest CT showed nodules in both lungs & collapse of the right middle lobe. So he wanted to start Prednisone for that, after doing a lung biopsy, which showed sarc, nothing else. Anyway, I learned that there was a NS specialist in Atlanta, Georgia, at Emory Univ. and there was a midwifery conference coming up in Atlanta! So I got an appt. with Dr. Stern during the conference, so my plane fare & hotel were covered under my continuing ed expenses. My insurance wouldn't cover him, so I paid $240 for the consult. But it was worth it. He did a very thorough exam, looked at my records & my history & said that I had NS, with peripheral neuropathy (oh, yeah, by then my feet were numb & burning). When I got home I copied his notes and highlighted every place where it said neurosarcoidosis, neuropathy, cranial nerve involvement, etc. and took it to my doctor's office. I gave it to the nurse-practitioner that works there & asked her to shove it in his face. She laughed & said she'd make sure he read it. I never saw that bozo again; apparently I wasn't the only dissatisfied patient there.

*****Okay, here are my current symptoms and/or organ involvement: lungs (mild); severe peripheral neuropathy of the feet (can't walk/stand for more than 10-15 min.), beginning neuropathy of the hands; bilat. hearing loss; residual from 7th nerve palsy; residual pain in left eye/cheek from 5th nerve damage (trigeminal neuralgia); persistent generalized fatigue; muscle weakness of all extremities; memory dysfunction; difficulty focusing/concentrating/organizing/finishing tasks. That's all I can think of right now; probably missed something. I also have severe degenerative disease of my lower spine, with two protruding disks, spinal stenosis, spurs, etc. Most of that is probably from 30+ years of nursing & poor body mechanics. I get severe muscle spasms with more than a few minutes on my feet. A back brace helps a little. Between my feet & my back I can't stand or walk more than a few minutes. Sometimes I go into a store & there aren't any electric carts available, so if I only need a few things I'll just use a regular cart. At least I can lean on it. But usually by the time I'm checking out, I have to actually kneel in front of the cash register to write a check or whatever! I just can't stand any longer. I just rented a scooter for a month & I want one really bad. It gave me a taste of what I could do, like going to the zoo or the State Fair with my grandkids. While I had the rented scooter, I went with my daughter Theresa (Sam's mom) and her two youngest kids, plus my niece Sharon & her husband & two kids to the Children's Museum in Indianapolis. I couldn't have done it without the scooter. We had a blast. If you ever get to Indianapolis, try to make it to the Children's Museum, even if you don't have kids with you.

Now I’m being worked up for chronic kidney disease and being seen at the Indiana Univ. sarc clinic in Indianapolis, but treatment other than Mtx is on hold until the kidney problem is figured out.

Anyway, that's my story & I'm sticking to it, unless someone gives convincing evidence otherwise Search from any web page with powerful protection. Get the FREE Windows Live Toolbar Today!

[Guest guest]

hi tracie! i'm back at work tonight where it's much easier and faster to catch up on emails. High speed internet here, dial up at home. before i reply to you email, can i ask a question? is there any way to make it so that i'm not getting inundated with emails intended for other members? do people hit 'reply to all' when they're emailing someone? maybe i'll regret rejecting them some day, but right now they're just annoying! i'm getting way too many... what;s the name of the sarcoid clinic in denver? it'd be funny if it's where i work...i'm an RT at Denver Health Medical Center, formerly Denver General a/k/a the denver knife and gun club. you situation sounds just terrible, i'm so sorry....the internet makes this illness sound so cut and dry, but it's really sounding much worse than i've been reading. i suddenly can't write more - work and all, gotta go...willtry again later...Loritiodaat@... wrote: Lori and Molly (the dog),You are in excellant teratory (sp) as Denver has one of the top sarcoidosis clinics anywhere in the states. I'm sure that helped with getting a quick diagnosis also.When I was first diagnosed, it was my ophthalmologist that discovered

bilateral iritis and figured that we had the answer to my chronic back pain. He figured I had anklyosing spondylitis - a form of arthritis that devours the triangle at the base of the spine crippling the patient-- or the "long shot" of sarcoidosis. I too was working for MD's, and so within a short period of time, we knew it was pulmonary sarcoidosis and sarcoid induced iritis.My pulm put me on prednisone at 80 mg a day, and it took 2 yrs to wean off it. I had a 5 year remission, then the sarc came back, and is now systemic and neuro along with Stage 4 pulm sarc-- so I have serious lung fibrosis.Since you already have optical involvement and neurological signs-- the Bells Palsy was caused by sarc-- it loves that 7th cranial nerve, as well as the optic nerves-- I hate to see that they're going to do the prednisone. Rarely when it's multiple systems does this go into remission. It may back off for awhile, then come back with more

involvement--so you are probably looking at long term steroids. As you know-- you can't just "stop" the prednisone, you will have to wean off it--as when you take pred, your body stops producing it's own cortisol, and the adrenals have to be retaught to produce it.It is so very important to stay on top of the eyes-- when you have inflammation of the eyes, developing iritis and glaucoma is very serious. So if you're light sensitive, and feel like you're coming down with the flu-- get your eyes checked-- it is a sign of glaucoma. Do be careful with the Fosamax and calcium/Vit D supplements. Sarcoidosis loves to take the calcium and put it where it doesn't belong. They aren't sure of the correlation, but we seem to not process calcium or Vit D (the jury still is out on this) but your MD's should run a 24 hr urine and check the levels- so that you don't have problems with your kidneys down the road.also, it is a thought

that the sarcoid granulomas attract calcium and it's that they start as an over-abundance of white cells, then the TNF-a and TNF-B proteins that should clean the white cells out don't work right-- and form calcium granulomas (tumors) all over the place.Do you have the sarcoid induced arthritis? How's the memory? How's your fatigue levels? One of the biggest challenges is learning to listen to your body, and when you're tired-- don't push to exhausted, or you will keep this bugger in flare. Take care of yourself, and know we're here - sometimes in the middle of the night. LOL! anyway, it's midnight in California, and I'm going to bed. Blessings,TracieNS co-owner/moderator

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

is there any way to make it so that i'm not getting inundated with emails intended for other members

Molly, you may want to go on Digest, where 25 messages are grouped as one. So if it's ongoing process of joking and such- then at least you'll know it's on a single string.

all of the messages posted to Neurosarcoidosis are for everyone to read-- and some people just put another persons name if they responding to something said.

I try to have people change the subject line, and do so many times myself when the post is about a certain topic. Especially if it's about a question asked--so that you can find answers to your issues quickly, without all the banter posts. (BTW, we encourage banter, as for many this is the only social outlet they have.)

At the bottom of this email is the address where you can go and change your email options on how you recieve mail.

The advantage of group posting is that many people can see the info on sarcoidosis and get answers to questions they didn't even know they had.

Take care, let me know what you need. If needed, you can contact me at Tiodaat@....

Thanks

Tracie

NS Co-owner/moderator

[Guest guest]

what;s the name of the sarcoid clinic in denver?

[Guest guest]

Lori, Glad to meet you, sorry you have a reason to meet us. Be careful of fosamax and the vitamin D. Fosamax caused my liver function to go nuts, and vitamin D is contraindicated in people with sarcoidosis, tends to make the "little creatures" granulomas grow; that's why we have problems with too much sun. Take care////Connielori peters wrote: Hi, Tracie! You sure do keep odd hours - I emailed the group in the middle of the night: I work night shift

as a Respiratory Therapist at a Denver hospital. Ironic, isn't it? I think probably the reason I got diagnosed in "only" (it felt like years!) 3 months is because I'm a hospital employee. They tend to look out for their own. Which is great by me. As for the Pred...the 1st time I took it was only for 5 days or so. They thought I had labyrinthitis and the Dr. overruled the PA and said it wasn't indicate. The 2nd time, i took the Pred for about 5 or 6 days only. And that was for the Bell's Palsy. It eventually resolved itself after 4 weeks. the THIRD time, was after the MRi which showed inflammation at the 7th and 8th cranial nerves. That was back in late may/early june. That course of Pred lasted 21 days. Since then I've been on nothing except some natural supplements that I researched in books and on the internet. Then, last week I started having vision problems

with my left eye. Though I had a detaching retina so I went to the ED where I work. That visit led to 2 Ophthalmology consults, a CT scan and a lumbar puncture and a neuro consult. And then, the resulting diagnosis....whew.... My chest X-ray was clear at this point, the neurologist said it's just neurosarcoid. He's got me on Fosamax and a Calcium and vitamin D supplement too. Reading your info, though, really makes me hope that my neurologist was wrong! It doesn't sound too pleasant. LOL. Not that the last 3 months have been a barrel full of monkeys. I wasn't able to work for 3 months and had no income except for the Grace of Mom. ANd I'm 44 years old. how humiliating. I've been easing back into work for the last 2 weeks. 3 - 4 hour shifts, then 2 - 8 hour shifts. but now i'm supposed to do 3 12 hour shift. My usual schedule. I've

put in a request to go to days, but that could take months to get OKd. I still have the vertigo to a degree, but it's mostly complicated by my vision problem in my left eye: inflammation of the optic nerves, bilaterally. But the crappy vision hasn't spread to the right yet. yee ha. Thanksfor letting me bend your ear. i'll try to check out some of the links, etc before i go back to the doctor on tuesday... Oh, and I go by Lori...Molly is my dog!!! ) tiodaat (AT) aol (DOT) com wrote: Hi Molly,I'm glad to hear that it took only 3 months and that MD's actually got together and found that you have NS. I'm amazed that they are

starting you on prednisone again. Do you have sarcoidosis anywhere else beside the neuro system?You asked if we ever experience remissions. some of us have had remissions that have lasted several years. I will tell you though that once the MD's stop your prednisone, generally the sarc will come back-- and more than likely start effecting additional systems.Prednisone is generally not effective long-term. The side effects of significant weight gain, the water retention, diabetes and osteoporosis it can cause is a downside.Most of us are on a combination of immunosuppressants. Imuran, Methotrexate, Arava, Plaquenil, Enbrel, Humira and Remicade are all choices that are effective in multi-system and neurosarcoidosis. They all have their side effects-- and you do have to be very aware to take extra precautions if you're out in public. (Take a bottle of that hand sanitizer with you always.) At the bottom

of this and every email that goes out is a list with the site addresses for our ARCHIVES and LINKS. You'll find a tremendous amount of information, and articles that you can print out and take to your MD's. You will find that you will be educating your MD's-- as very few have an understanding of NS. We're a large group now-- over 400 people. We all have this disease, and are in various stages of sarcoidosis. If you don't get a reply for a day or so, know that you will hear from us. It's just that for some reason, all of the moderators and owners are in flare at the moment-- so we have to take our own advice and pace ourselves. Welcome to group, no question to dumb or obvious. So ask away. sincerely,TracieNS co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Rose, don't say that part about "unless someone gives me convincing evidence otherwise" you & I both know the doctors try that scam all the time////LOL ConnieRose wrote: Hi, Lori and welcome to our family. Tracie pretty well covered all the bases on resources & links. I'm also impressed with the speed & efficiency of your diagnosis. Where do you live? I was also a hospital employee (and I think valued by my

colleagues), but still required several years & multiple symptoms before diagnosis & treatment. I didn't notice in your story anything about a biopsy. Did your neurologist make the diagnosis without a biopsy positive for sarcoidosis anywhere? So many docs are unwilling to make the call even with a positive biopsy. I'll be honest with you regarding your comment that you're hoping the diagnosis is wrong; this is a horrible disease. But you seem to have hit the jackpot regarding diagnosis; sounds like your docs just need to be updated on current research on treatment options. I have added my story to the bottom of this message, if you are interested. There is a long version & a shorter one! I'm not called Ramblin' Rose for nothing! Again, welcome to the group. Ramblin' Rose Moderator Brief intro: I am 57, divorced 10 yrs. after 22 yr. marriage. I have 3 grown kids, 30, 35 & 36. The youngest (a son) is married (now separated), with 2 stepkids. My girls are both divorced, with 5 kids between them. My oldest granddaughter, , has lived with me for 4 years. It's been a roller-coaster. She is not a bad kid, but makes incredibly bad choices. She just recently was returned to the Indiana Girls School (incarcerated) for parole violations. I am at the end of my rope with her. I don't want to cut the rope, but somebody is going to have to do something. Well, anyway, after about one year of med-surg nursing, then 10 years of labor & delivery, I became a nurse-midwife. I worked 2 years in Mississippi, then 4 in Texas, moved back to my home state of Indiana & worked

14 more years as a midwife before having to retire on disability. My last birth was my niece's baby boy, Trent, who just turned 3. As my signatures indicates, I'm not often speechless. I will try very hard to condense this saga. You might want to just skip down to the *****. Anyway, in March of 1994 I had a lingering episode of atrial fibrillation (heart arrhythmia). While working me up for that, it was discovered that the hilar nodes in my chest were enlarged. I had no symptoms, other than the atrial fib, and my lungs were clear. They said it was probably sarcoidosis, but I needed a biopsy to be sure it wasn't lymphoma or something else "serious." The biopsy showed sarc, I had a lung function test, some blood tests, no sign of sarc by those, or by the cardiac echo for the arrhythmia. All my doctors told me that it usually goes away on its own & doesn't cause any problems. I had been an RN for 23 yrs. at that time, &

had a vague recollection of hearing about sarc. I did a little research through our hospital medical library & read about all the awful places you could have sarc--eyes, heart, brain, etc. I was very grateful that I didn't have any of that, but didn't realize that it could pop up later in any of those places. I went on my merry way. I had been a certified nurse-midwife for ten years then, working long hours, but loving it. In June of 1999 I had sudden hearing loss & vertigo in my right ear. My family doc said it was from a virus, no treatment would help & the hearing loss was permanent. He didn't send me to an ENT (ear doc; I don't know if you use the same abbreviations, so pardon me if I'm too repetitive.) because "there was nothing to be done." Well, I should have known better, but I believed him. Then in Nov. I had a Bell's palsy on the left side, which again was blamed on a virus, but this time I did some Internet research & found that

treatment with Prednisone as well as Acyclivir was recommended at most centers. Ol' family doc didn't want to give me anything, because "80% of these just resolve on their own." I told him that was fine, but I didn't want to be one of the 20% stuck with permanent damage, wondering if the drugs would have helped. I badgered him until he ordered them. It resolved within two weeks. Meanwhile I did some research on sensorineural hearing loss, even talking to a doctor at the Univ. of Tennessee who was doing research on it. He was surprised that my family doctor didn't order Prednisone or at least send me to an ENT. He said a large number of patients regained some of their hearing if treated right away. This knowledge came in handy, because one month after the Bell's palsy, the hearing in my left ear went! No vertigo this time, but I was panicking. I had just gotten a hearing aid for the right ear ($1600--all out of my pocket) & was struggling to communicate with my

patients. My doctor was out sick, so I asked an internist friend & he immediately called an ENT, plus set me up for a brain MRI the next day. This was just a few days before Christmas, so these were done as a personal favor to him. The ENT was surprised that I wasn't given Pred or an ENT referral with the first hearing loss and gave me a 10-day course of Prednisone. The MRI was normal--they were looking for MS. No one thought of neurosarcoidosis, including me. I got another hearing aid, and bumbled along for another year. The last day I felt normal was Halloween of 2000. I dressed as a hippie & ran all over the hospital with my flower child sign. The next day my eyes started itching intensely--no redness or discharge. I just wanted to run a hairbrush over the lids! Benadryl did nothing. The next day I started running a fever, feeling exhausted & weak. The itching gradually resolved, to be replaced by a feeling that I had cobwebs on my face. The fever left after

a few days, but the fatigue never did! All my energy went into work & I took naps all the time at work. I lost a lot of weight because I just was too tired to eat. When I did eat, it was cereal, a sandwich or a microwave pot pie. I finally took some cans of Boost (protein drink) to work. At lunch break, I'd chug one down, then lie on the floor & sleep until the first afternoon patient was ready. I had every test run that they could think of, all negative. I had switched family docs before this all happened, after the ear stuff, but the new guy wasn't any better. He told me that there was nothing wrong with me that an hour on the treadmill every morning couldn't cure! Still, nobody connected anything to sarcoidosis. As the months passed & I was still sleeping more than I was awake, he kept telling me that it was a virus. I was so sick of hearing "It's just a virus!" Aaaaaaarrrrrrggggghhhhh! Anyway, I began tipping over, falling out of chairs, having tremors

& was given a referral to a neurologist, who immediately suspected that I had NS. He was astonished that no one else had considered it. So he did another MRI, spinal tap & a bunch of nerve conduction exams. All normal! So he didn't want to treat me. I think he believed 100% in his heart & his head that it was NS, but he wanted some kind of lab test to confirm it. So a year passed, with another Bell's palsy on the left, which did not resolve completely. After working with a speech therapist, who used electrostimulation on my facial muscles, the residual damage is not noticeable to most people, but I can still tell. I can't close my left eye as tightly, etc. I also developed a nasty cough & saw a pulmonologist. A chest CT showed nodules in both lungs & collapse of the right middle lobe. So he wanted to start Prednisone for that, after doing a lung biopsy, which showed sarc, nothing else. Anyway, I learned that there was a NS specialist in Atlanta,

Georgia, at Emory Univ. and there was a midwifery conference coming up in Atlanta! So I got an appt. with Dr. Stern during the conference, so my plane fare & hotel were covered under my continuing ed expenses. My insurance wouldn't cover him, so I paid $240 for the consult. But it was worth it. He did a very thorough exam, looked at my records & my history & said that I had NS, with peripheral neuropathy (oh, yeah, by then my feet were numb & burning). When I got home I copied his notes and highlighted every place where it said neurosarcoidosis, neuropathy, cranial nerve involvement, etc. and took it to my doctor's office. I gave it to the nurse-practitioner that works there & asked her to shove it in his face. She laughed & said she'd make sure he read it. I never saw that bozo again; apparently I wasn't the only dissatisfied patient there. *****Okay, here are my current symptoms and/or organ

involvement: lungs (mild); severe peripheral neuropathy of the feet (can't walk/stand for more than 10-15 min.), beginning neuropathy of the hands; bilat. hearing loss; residual from 7th nerve palsy; residual pain in left eye/cheek from 5th nerve damage (trigeminal neuralgia); persistent generalized fatigue; muscle weakness of all extremities; memory dysfunction; difficulty focusing/concentrating/organizing/finishing tasks. That's all I can think of right now; probably missed something. I also have severe degenerative disease of my lower spine, with two protruding disks, spinal stenosis, spurs, etc. Most of that is probably from 30+ years of nursing & poor body mechanics. I get severe muscle spasms with more than a few minutes on my feet. A back brace helps a little. Between my feet & my back I can't stand or walk more than a few minutes. Sometimes I go into a store & there aren't any electric carts available, so if I only need a few things I'll just

use a regular cart. At least I can lean on it. But usually by the time I'm checking out, I have to actually kneel in front of the cash register to write a check or whatever! I just can't stand any longer. I just rented a scooter for a month & I want one really bad. It gave me a taste of what I could do, like going to the zoo or the State Fair with my grandkids. While I had the rented scooter, I went with my daughter Theresa (Sam's mom) and her two youngest kids, plus my niece Sharon & her husband & two kids to the Children's Museum in Indianapolis. I couldn't have done it without the scooter. We had a blast. If you ever get to Indianapolis, try to make it to the Children's Museum, even if you don't have kids with you. Now I’m being worked up for chronic kidney disease and being seen at the Indiana Univ. sarc clinic in Indianapolis, but treatment other than Mtx is on hold until the kidney problem is figured out. Anyway, that's my story

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