Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Welcome , Sorry you have to find us, but glad you did. It's probably too soon to see all the results you will get from the Prednisone right away, same with Neurontin, so give it some more time. We are here for you, we too are ill, so don't worry if we don't get right back to you, we will as soon as we can. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Hi all, I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? Cheers, Sutherland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Thank you for the welcome . It's reassuring to know that I should be more patient with the effects of the medications. I really hope something changes. My family says I've been talking more loudly since I was in hospital, so I'm now wondering if I've got some hearing loss as well. Sigh. Do any other members have experience with partial vision loss? I lost the lower left quadrant of my visual field fairly quickly, and in the past month it's extended into the top left quadrant. Cheers, ------------------------------------------------------------ Author of : Cracking Codes and Cryptograms for Dummies http://tinyurl.com/CodesandCryptograms Word Searches for Dummies http://tinyurl.com/WordSearches Follow me on Facebook! http://www.facebook.com/pages/-Sutherland/149144697766 ------------------------------------------------------ > Welcome , > Sorry you have to find us, but glad you did. It's probably too soon to see all the results you will get from the Prednisone right away, same with Neurontin, so give it some more time. We are here for you, we too are ill, so don't worry if we don't get right back to you, we will as soon as we can. > > Marla > Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too > is just today:) > > > > > > On Fri, Oct 8, 2010 at 5:14 PM, S wrote: > > Hi all, > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > Cheers, > > Sutherland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Hi , Some of the things in your email I don't understand as they are in technical terms like the hq - what is that? I am new to this site too. I woke up one day with almost no site in my left eye (Aug 24th). Since then they thought my optic nerve was inflamed, but since other weird things happened (eye lid drooping, also some palsy in left side of face, numbness/tingling) with a MRI and a CT (CT showed I have nothing in my lungs). Also what is parent? Sorry to ask specifics...but since I am new to this I am trying to figure everything out. My doctor says that the numbness/tingling in my hands in feet are just that...I won't lose mobility at all. I am going on 5 weeks of 100mg of pred. and my eye sight has improved but not come in all the way yet...Also, why can't you drive. I had to get glasses as I have like 150 vision in my right eye, but they have vision down to 20/40 now with glasses - but doctor okayed me to drive ...at least locally even with the poor vision in my left eye...are laws in Australia different? Hope something I said helped... KP > > Hi all, > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > Cheers, > > Sutherland > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Hi KP > Some of the things in your email I don't understand as they are in technical terms like the hq - what is that? Sorry about the long words! I'm a crossword writer by profession, and have a large vocabulary as a result Homonymous = " same on both sides " and Quandrantanopia = quadrant (1/4) + anopia (=no sight) = loss of vision in one quarter of the visual field. So HQ = loss of vision in the same quarter visual field in both eyes. So that means I've lost vision in the lower left quadrant in both eyes. Homonymous Hemianopia is loss of vision in both eyes for half the visual field (hemi, as in hemisphere) - which generally refers to the left field of view or the right field of view. Vision loss in *both* eyes, in the *same* area is almost always neurological (it's very unlikely you'd get deterioration in the eyeball itself in exactly the same places in both eyes at the same time). My lesions are just behind the optic chiasm (the point where the optic nerves from the eyes join together). > I am new to this site too. I woke up one day with almost no site in my left eye (Aug 24th). That's pretty scary! My visual loss came on pretty quickly too, I was being bugged by it over about a day, and it took about that long to realise something was serious going awry! > Since then they thought my optic nerve was inflamed, but since other weird things happened (eye lid drooping, also some palsy in left side of face, numbness/tingling) with a MRI and a CT (CT showed I have nothing in my lungs). My lungs are clear too - well, there's a single " ground glass nodule " about 5 x 7 mm in my lungs, but they decided it didn't look like sarcoid, and they didn't biopsy it. > Also what is parent? Sorry to ask specifics...but since I am new to this I am trying to figure everything out. My doctor says that the numbness/tingling in my hands in feet are just that...I won't lose mobility at all. Paresthesia is just the technical term for the numbness / tingling / slight pins and needles / abnormal sensations. ( " Para " = irregular, " esthesia " = sensation). I'm glad to hear what your doctor says, hopefully that will apply to me as well .... I can put up with the numbness, but losing function / movement would be really hard. It is really good to know what your doctor says, thanks for that! > I am going on 5 weeks of 100mg of pred. and my eye sight has improved but not come in all the way yet...Also, why can't you drive. I'm on 60 mg pred for 4 weeks, and then a decreasing dose from there. Also on Neurontin ... no obvious improvements yet, but it's still early days. I'm not allowed to drive because I've lost too much of my visual field in *both* eyes - the ophthalmologist says I have to have 120º of peripheral vision, and I've got less than that. And yes, I think it's a legal thing here where I live. I'm not allowed to drive by law until my peripheral visual field improves to the legal limit. I already wear glasses, but they can't compensate for the big gaps in my vision! > I had to get glasses as I have like 150 vision in my right eye, but they have vision down to 20/40 now with glasses - but doctor okayed me to drive ...at least locally even with the poor vision in my left eye...are laws in Australia different? It's probably because you still have vision in your right eye - if you'd lost vision in BOTH eyes, you might find you're not OK to drive. When I'm in a car, watching the road, cars will 'blink' in and out of existence, depending on where I'm looking, and road signs disappear and so on - I'm sure I *could* drive in an emergency, making sure I scanned the road extra carefully, but it's clearly not an ideal situation, and I'm sure my insurance company wouldn't cover me in the case of an accident. Best wishes, > > KP > > > > > Hi all, > > > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > > > Cheers, > > > > Sutherland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 , watch out for the Neurotin (it's appropriately named-it damages teeth), there is another medicine Lyrica that works extremely well but does not the teeth problem. Also with the nerve problem you may want to ask your physicians about CIDP. I have systemic sarc, stage IV, but I also have CIDP (Chronic Inflammatory Dymelinating Polyneuropathy) I take IVIG (IV Immunoglobulin) therapy once a month now. The nerves in my heart were ignoring my pacer, and like you my neuropathy was crawling upward. Till they got some of the symptoms under control with a higher dose of lyrica my legs would burn like fire, i could not stand for anything to touch them even though they are numb to pinprick, if I wasn't burning I felt like I was lying in a fire ant bed. My arms are also beginning to show signs of problems. The IVIG therapy has stopped the heart symptoms. To: Neurosarcoidosis Sent: Fri, October 8, 2010 4:14:55 PMSubject: New from Australia Hi all,I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx.I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet).Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia.Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?Cheers, Sutherland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 , I had my hearing checked once cuz of so many sinus problems and trouble hearing and what i thought was ear pain. It turned out that my hearing was fine but my eustation tubes were thickened. I have had a lot of thickening in different areas in my face including sinuses and the muscles and tendons in my jaw. I had hearing tests and a cat scan to find out all of this. My dentist was the one who told me about the thickening in my jaw. I take a steroid nasal spray to help with the thickening and subsequent pain. I also use many Biotene (dry mouth issues) products that also help. The weather and stress seem to make it act up more than it already does at times. A short dose of pred helps on occasion when it gets really bad. welcome, S.Life may not always be the party we hoped for, but while we're here we might as well dance!> > Hi all,> > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.> > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx.> > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet).> > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia.> > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?> > Cheers,> > Sutherland> > > > ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 Hi , Thanks for breaking it down for me, I understand now why you are not able to drive (thought you only lost vision in the one eye). I am a teacher, just received my master's degree in May. I would like to go on and get my doctorate but not sure. I was recently laid off due to low enrollment at the school I was teaching. I taught sexual offenders age 10-20(only boys). It was a great job, with a lot of stress. Right now I am working for a local university supervising student teachers (pre-service teachers). I am glad for the part-time work, as working full time seems to be out of the question with all of the doctor's appts. Plus, it seems new things are being added to the vision problems like- numbness in legs, hands and now my tongue (I think I have some loss of taste too). Also, my neck has been feeling weird, like I am a bobble head. Do you have a family? I am married to a wonderful guy, and have a son who is 17. They have been very supportive - my husband a bit tired though as he has been driving me to my doctor's appts. on his days off. How are you able to read your email? Also, does the doctor think you will make a full recovery? Are you able to work? Well, take care, KP > > > > > > Hi all, > > > > > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > > > > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > > > > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > > > > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > > > > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > > > > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > > > > > Cheers, > > > > > > Sutherland > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 , I had to do a little research; you've had some conditions I've never heard of! I'm a retired nurse-midwife, so not that familiar with some of the optic terms. It certainly sounds as though you've had NS for some years. I'm curious about those earlier symptoms; did you have workups? What did your doctors think of all this, especially the changes in sense of smell/taste, etc? The bumps on your legs sound like erythema nodusom, which ironically is supposed to indicate the type of sarc likely to disappear, never to be seen again. When you were in the hospital, were you given IV steroids, what some call a burst? That should have gotten a rapid response. If you've only taken oral steroids, maybe you need a dose or two by IV. Have they discussed adding another drug? What type of specialist(s) are you seeing? Not sure about Australia, but you definitely need an opthamolologist (sp?) experienced in sarcoidosis & preferably a neuro-opthamologist. Do you have confidence in your medical team's experience with complicated sarcoidosis? Here is a sarc expert I found online; I have no idea how close he is to you, but your local docs may be able to collaborate with him by phone. There are docs here is the U.S. that do that. We have some other members from Australia; hopefully they will be able to give some other ideas. , Dr. Roger K. A. Thoracic Consultant Physician Wesley Medical CentreLevel 4, Suite 4640 Chasely StreetAuchenflower Qld 4066Brisbane, AustraliaPhone: (07) 3719 5577 Fax: (07) 3719 5177respiratorylab@... Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Fri, 8 Oct 2010 23:14:55 +0000> Subject: New from Australia> > Hi all,> > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.> > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx.> > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet).> > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia.> > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?> > Cheers,> > Sutherland> > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 I'm from Australia, but I'm a little bit out of the loop on this post... > > > , I had to do a little research; you've had some conditions I've never heard of! I'm a retired nurse-midwife, so not that familiar with some of the optic terms. It certainly sounds as though you've had NS for some years. I'm curious about those earlier symptoms; did you have workups? What did your doctors think of all this, especially the changes in sense of smell/taste, etc? The bumps on your legs sound like erythema nodusom, which ironically is supposed to indicate the type of sarc likely to disappear, never to be seen again. > > When you were in the hospital, were you given IV steroids, what some call a burst? That should have gotten a rapid response. If you've only taken oral steroids, maybe you need a dose or two by IV. Have they discussed adding another drug? What type of specialist(s) are you seeing? Not sure about Australia, but you definitely need an opthamolologist (sp?) experienced in sarcoidosis & preferably a neuro-opthamologist. Do you have confidence in your medical team's experience with complicated sarcoidosis? Here is a sarc expert I found online; I have no idea how close he is to you, but your local docs may be able to collaborate with him by phone. There are docs here is the U.S. that do that. We have some other members from Australia; hopefully they will be able to give some other ideas. > > , Dr. Roger K. A. > Thoracic Consultant Physician Wesley Medical Centre > Level 4, Suite 46 > 40 Chasely Street > Auchenflower Qld 4066 > Brisbane, Australia > Phone: (07) 3719 5577 Fax: (07) 3719 5177 > respiratorylab@... > > > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Fri, 8 Oct 2010 23:14:55 +0000 > > Subject: New from Australia > > > > Hi all, > > > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > > > Cheers, > > > > Sutherland > > > > > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 Hi KP, > I am a teacher, just received my master's degree in May. I would like to go on and get my doctorate but not sure. I was recently laid off due to low enrollment at the school I was teaching. I taught sexual offenders age 10-20(only boys). It was a great job, with a lot of stress. That does sound pretty stressful! I think we need to get into work that is low stress ... better for our bodies. > Right now I am working for a local university supervising student teachers (pre-service teachers). I am glad for the part-time work, as working full time seems to be out of the question with all of the doctor's appts. It gets like that, doesn't it :/ > Plus, it seems new things are being added to the vision problems like- numbness in legs, hands and now my tongue (I think I have some loss of taste too). Also, my neck has been feeling weird, like I am a bobble head. Oh dear, I hope that improves for you. > Do you have a family? I am married to a wonderful guy, and have a son who is 17. Yes, I'm married and we have two kids - our son is 21, and daughter is 19. She moved out of home yesterday, so that's a big change for us all! We have a lot of illness in our family, I'm actually the healthiest of the lot, which puts a lot of stress on me as a carer. My husband has severe chronic fatigue syndrome and polymylagia rhaumatica and ADHD, our son has Aspergers, and our daughter has ADHD, type 1 diabetes (the insulin dependent scary sort), endometriosis and an unknown autoimmune problem, maybe lupus? > They have been very supportive - my husband a bit tired though as he has been driving me to my doctor's appts. on his days off. How are you able to read your email? Also, does the doctor think you will make a full recovery? Are you able to work? I can read sort of OK, if slowly, by scanning further to the left of each word than I normally would. When I look at a word directly I only see half of it, but if I look further left beyond where the word starts, I can see it all, eventually. Slow and annoying, but possible. I'm having real trouble working - partially from the predn. and partially from the vision problems. My brain just isn't working well, very fuzzy headed and can't focus on writing. I'm worried about my future career - as a self-employed person, I don't know how I'll manage with all these limitations. My work requires a great deal of accuracy, precision, and mental acuity (I'm a puzzle writer - crosswords and so on) - I can't bear to think about not being able to do it I'm trying to only cross that bridge if I get to it though ... it's a bit scary. xo > > > > > > > > > > Hi all, > > > > > > > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > > > > > > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > > > > > > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > > > > > > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > > > > > > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > > > > > > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > > > > > > > Cheers, > > > > > > > > Sutherland > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 Hi Rosie, Thanks for your email > , I had to do a little research; you've had some conditions I've never heard of! It's a bit like that, isn't it! I really didn't want to be the " interesting " patient in hospital, never a good way to go, is it? > I'm a retired nurse-midwife, so not that familiar with some of the optic terms. It certainly sounds as though you've had NS for some years. It does, rather, doesn't it? > I'm curious about those earlier symptoms; did you have workups? What did your doctors think of all this, especially the changes in sense of smell/taste, etc? With the 6th nerve palsy I was in hospital for a week - they did every test they could think of - including lumbar puncture and MRI (both clear) - and didn't come up with any conclusion apart from " Sometimes a palsy just happens for no reason. " I've had an ANA of 1:320 speckled for years now. With the loss of taste and smell my doctors basically just shrugged. I keep a medical journal - and so have been able to go back and write out the various weird neurological symptoms I've had for the past 5 years, most of which my doctors have not said anything definitive about. I guess a lot of them are non-specific. I did see an immunologist for a bit, he was focussed on whether I had Sjogren's (as I have dry eyes, dry mouth, and my grandmother had it) ... but I didn't tick all the boxes there either. I stopped seeing him because I didn't feel I was getting anywhere with him (I'm about to start seeing him again, since my latest hospitalisation). > The bumps on your legs sound like erythema nodusom, which ironically is supposed to indicate the type of sarc likely to disappear, never to be seen again. I'm pretty sure they aren't that, I've got them every summer for the past 3-4 years - I had several dermatologists on hospital look at the photos I'd taken of the rashes (I don't have it active at the moment), and they thought it looked like a sun exposure rash of some sort, and they *were* on the lookout for sarcoid stuff. I'm seeing my regular dermatologist next month, and will get a biopsy as soon as the rash reappears (it's a summer phenomenon). > When you were in the hospital, were you given IV steroids, what some call a burst? That should have gotten a rapid response. If you've only taken oral steroids, maybe you need a dose or two by IV. No, they just put me on oral steroids .. > Have they discussed adding another drug? I'm also on Neurontin, I think maybe my numb right arm is a tiny little better, it doesn't hurt quite as much, but the numbness is still there. > What type of specialist(s) are you seeing? Neurologist, immunologist, dermatologist, ophthalmologist, sports physician (my best Dr, he thinks outside the box and is excellent). > Not sure about Australia, but you definitely need an opthamolologist (sp?) experienced in sarcoidosis & preferably a neuro-opthamologist. I don't know if any of those beasts exist around here ... I'll look into it. > Do you have confidence in your medical team's experience with complicated sarcoidosis? I have no idea! My GP says the neurologists in Canberra are excellent, but I don't know if any of them are sarcoidosis specialists per se. > Here is a sarc expert I found online; I have no idea how close he is to you, but your local docs may be able to collaborate with him by phone. There are docs here is the U.S. that do that. That's a good idea, thanks for that. > We have some other members from Australia; hopefully they will be able to give some other ideas. Thanks for the reference to Dr . Brisbane is a very long way from where I live, but it's good to know there's an expert out there, and as you say, maybe my doctors can talk with him. I don't have any respiratory symptoms, just the neurological and ?dermatological ones, so I don't know if he's the perfect match for me? Cheers, > > , Dr. Roger K. A. > Thoracic Consultant Physician Wesley Medical Centre > Level 4, Suite 46 > 40 Chasely Street > Auchenflower Qld 4066 > Brisbane, Australia > Phone: (07) 3719 5577 Fax: (07) 3719 5177 > respiratorylab@... > > > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Fri, 8 Oct 2010 23:14:55 +0000 > > Subject: New from Australia > > > > Hi all, > > > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. > > > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. > > > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). > > > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. > > > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? > > > > Cheers, > > > > Sutherland > > > > > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 Connie, as I mentioned in my lonnnnnng message earlier, several people have had problems with Neurontin causing them to space out & crash their cars. When it happened to me, I knew that I hadn't fallen asleep. Witnesses saw me go off the road & down into a ditch, hit a steel RR crossing sign & bend it, wiping out the right side of my car. I then went back up onto the shoulder for a short way before heading back into the ditch & hitting a telephone pole head-on, breaking the pole. I was apparently going 40 mph when I hit the pole & I hit it so hard the car bounced back up onto the shoulder & ended up heading the other direction. I had no awareness of hitting the sign. I was driving along thinking about stopping for a cinnamon biscuit when suddenly the telephone pole was right there. I was strangely calm, thinking "I should probably try to stop." Even after I got out of the car, my heart wasn't pounding, my knees weren't weak. Thanks to my seatbelt & airbag, I had no injuries. The police officer that arrived insisted I go to the E.R. for drug testing, which was negative. Two of the E.R. nurses knew me & told me that I didn't seem like myself, that I seemed "detached." Now I had taken Neurontin for close to 2 years, with no change of dosage, when this happened. I'm sure that the majority of people taking it have no problems like this, but I have to say, it scared the s*** out of me! I don't know anything about the effects on teeth, but this spacing out is very scary. As far as I know, it was the first time, but I could have done it before & just didn't hit anything. I would not take it again unless I was not going to be driving, or using a chain saw. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Sat, 9 Oct 2010 20:57:16 -0700Subject: Re: New from Australia , watch out for the Neurotin (it's appropriately named-it damages teeth), there is another medicine Lyrica that works extremely well but does not the teeth problem. Also with the nerve problem you may want to ask your physicians about CIDP. I have systemic sarc, stage IV, but I also have CIDP (Chronic Inflammatory Dymelinating Polyneuropathy) I take IVIG (IV Immunoglobulin) therapy once a month now. The nerves in my heart were ignoring my pacer, and like you my neuropathy was crawling upward. Till they got some of the symptoms under control with a higher dose of lyrica my legs would burn like fire, i could not stand for anything to touch them even though they are numb to pinprick, if I wasn't burning I felt like I was lying in a fire ant bed. My arms are also beginning to show signs of problems. The IVIG therapy has stopped the heart symptoms. To: Neurosarcoidosis Sent: Fri, October 8, 2010 4:14:55 PMSubject: New from Australia Hi all,I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx.I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet).Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia.Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?Cheers, Sutherland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 Briefly, the only time I have been out of pain in ten years was when I was on a high dose of Neurontin. I was thrilled until one day on the way to work I stopped at a stop sign and all of a sudden a honk jarred me and I noticed their were 4 cars behind me. During the day I zonked out working on patients but covered myself each time until their was a couple in the treatment room and one of them woke me up and said I was in the middle of a sentence when I just fell asleep standing. It gave me Narcolepsy. I had to have some one drive me until it got out of my system. Pity Mitch New from Australia Hi all, I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer. I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my l eft side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)? Cheers, Sutherland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 said: Thanks for the reference to Dr . Brisbane is a very long way from where I live, but it's good to know there's an expert out there, and as you say, maybe my doctors can talk with him. I don't have any respiratory symptoms, just the neurological and ?dermatological ones, so I don't know if he's the perfect match for me? , because pulmonologists see most of the sarc patients, many of them have become very knowledgeable about extrapulmonary sarc. Dr. Baughman at the Univ. of Cincinnati is a pulmonologist, but knows more about NS than most neurologists. When NS was first suspected in my case, my neuro was reluctant to treat because "all the tests were normal." My pulmonologist told me, "I don't care what the tests say. You have neurosarcoidosis!" I could have kissed him. What I did was go to a NS specialist at Emory U. in Atlanta, Georgia, who said that there was no doubt it was NS. I realize that everyone can't do something like that (Atlanta is about 12 hrs. from me). I was fortunate to find a midwifery conference in Atlanta & got an appt with the doc during that week. I had actually emailed this doc before I made an appt, explaining my situation, he answered & gave me some guidelines for getting evaluated. You might try emailing Dr. & asking if he has experience with NS or can recommend someone. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Mon, 11 Oct 2010 21:54:00 +1100> Subject: Re: New from Australia> > Hi Rosie,> > Thanks for your email > > > , I had to do a little research; you've had some conditions I've never heard of! > > It's a bit like that, isn't it! I really didn't want to be the "interesting" patient in hospital, never a good way to go, is it?> > > I'm a retired nurse-midwife, so not that familiar with some of the optic terms. It certainly sounds as though you've had NS for some years.> > It does, rather, doesn't it?> > > I'm curious about those earlier symptoms; did you have workups? What did your doctors think of all this, especially the changes in sense of smell/taste, etc? > > With the 6th nerve palsy I was in hospital for a week - they did every test they could think of - including lumbar puncture and MRI (both clear) - and didn't come up with any conclusion apart from "Sometimes a palsy just happens for no reason." I've had an ANA of 1:320 speckled for years now.> > With the loss of taste and smell my doctors basically just shrugged. I keep a medical journal - and so have been able to go back and write out the various weird neurological symptoms I've had for the past 5 years, most of which my doctors have not said anything definitive about. I guess a lot of them are non-specific. I did see an immunologist for a bit, he was focussed on whether I had Sjogren's (as I have dry eyes, dry mouth, and my grandmother had it) ... but I didn't tick all the boxes there either. I stopped seeing him because I didn't feel I was getting anywhere with him (I'm about to start seeing him again, since my latest hospitalisation).> > > The bumps on your legs sound like erythema nodusom, which ironically is supposed to indicate the type of sarc likely to disappear, never to be seen again.> > I'm pretty sure they aren't that, I've got them every summer for the past 3-4 years - I had several dermatologists on hospital look at the photos I'd taken of the rashes (I don't have it active at the moment), and they thought it looked like a sun exposure rash of some sort, and they *were* on the lookout for sarcoid stuff. I'm seeing my regular dermatologist next month, and will get a biopsy as soon as the rash reappears (it's a summer phenomenon).> > > When you were in the hospital, were you given IV steroids, what some call a burst? That should have gotten a rapid response. If you've only taken oral steroids, maybe you need a dose or two by IV.> > No, they just put me on oral steroids ..> > > Have they discussed adding another drug? > > I'm also on Neurontin, I think maybe my numb right arm is a tiny little better, it doesn't hurt quite as much, but the numbness is still there. > > > What type of specialist(s) are you seeing? > > Neurologist, immunologist, dermatologist, ophthalmologist, sports physician (my best Dr, he thinks outside the box and is excellent).> > > Not sure about Australia, but you definitely need an opthamolologist (sp?) experienced in sarcoidosis & preferably a neuro-opthamologist. > > I don't know if any of those beasts exist around here ... I'll look into it.> > > Do you have confidence in your medical team's experience with complicated sarcoidosis? > > I have no idea! My GP says the neurologists in Canberra are excellent, but I don't know if any of them are sarcoidosis specialists per se. > > > Here is a sarc expert I found online; I have no idea how close he is to you, but your local docs may be able to collaborate with him by phone. There are docs here is the U.S. that do that. > > That's a good idea, thanks for that.> > > We have some other members from Australia; hopefully they will be able to give some other ideas.> > Thanks for the reference to Dr . Brisbane is a very long way from where I live, but it's good to know there's an expert out there, and as you say, maybe my doctors can talk with him. I don't have any respiratory symptoms, just the neurological and ?dermatological ones, so I don't know if he's the perfect match for me?> > Cheers, > > > > > > , Dr. Roger K. A. > > Thoracic Consultant Physician Wesley Medical Centre> > Level 4, Suite 46> > 40 Chasely Street> > Auchenflower Qld 4066> > Brisbane, Australia> > Phone: (07) 3719 5577 Fax: (07) 3719 5177> > respiratorylab@...> > > > > > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Fri, 8 Oct 2010 23:14:55 +0000> > > Subject: New from Australia> > > > > > Hi all,> > > > > > I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.> > > > > > I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx.> > > > > > I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. > > > > > > I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet).> > > > > > Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia.> > > > > > Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?> > > > > > Cheers,> > > > > > Sutherland> > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 I was on Neurontin for about a year, and they slowly increased my dose until I got to a point of no pain, but I turned into a zombie, really, my legs felt like they weighed 100 lbs each, I had no facial expression, and walked like a Zombie, slow and strange, I called my doc and she had me back down on the dose, but I always felt in a fog on it. I don't feel that at all with the Lyerica, in fact if I'm in a lot of pain I can take an extra one, and it gives me a little buz, not bad one, a little burst of energy which is nice every once in awhile. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Connie, as I mentioned in my lonnnnnng message earlier, several people have had problems with Neurontin causing them to space out & crash their cars. When it happened to me, I knew that I hadn't fallen asleep. Witnesses saw me go off the road & down into a ditch, hit a steel RR crossing sign & bend it, wiping out the right side of my car. I then went back up onto the shoulder for a short way before heading back into the ditch & hitting a telephone pole head-on, breaking the pole. I was apparently going 40 mph when I hit the pole & I hit it so hard the car bounced back up onto the shoulder & ended up heading the other direction. I had no awareness of hitting the sign. I was driving along thinking about stopping for a cinnamon biscuit when suddenly the telephone pole was right there. I was strangely calm, thinking " I should probably try to stop. " Even after I got out of the car, my heart wasn't pounding, my knees weren't weak. Thanks to my seatbelt & airbag, I had no injuries. The police officer that arrived insisted I go to the E.R. for drug testing, which was negative. Two of the E.R. nurses knew me & told me that I didn't seem like myself, that I seemed " detached. " Now I had taken Neurontin for close to 2 years, with no change of dosage, when this happened. I'm sure that the majority of people taking it have no problems like this, but I have to say, it scared the s*** out of me! I don't know anything about the effects on teeth, but this spacing out is very scary. As far as I know, it was the first time, but I could have done it before & just didn't hit anything. I would not take it again unless I was not going to be driving, or using a chain saw. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Sat, 9 Oct 2010 20:57:16 -0700 Subject: Re: New from Australia , watch out for the Neurotin (it's appropriately named-it damages teeth), there is another medicine Lyrica that works extremely well but does not the teeth problem. Also with the nerve problem you may want to ask your physicians about CIDP. I have systemic sarc, stage IV, but I also have CIDP (Chronic Inflammatory Dymelinating Polyneuropathy) I take IVIG (IV Immunoglobulin) therapy once a month now. The nerves in my heart were ignoring my pacer, and like you my neuropathy was crawling upward. Till they got some of the symptoms under control with a higher dose of lyrica my legs would burn like fire, i could not stand for anything to touch them even though they are numb to pinprick, if I wasn't burning I felt like I was lying in a fire ant bed. My arms are also beginning to show signs of problems. The IVIG therapy has stopped the heart symptoms. To: Neurosarcoidosis Sent: Fri, October 8, 2010 4:14:55 PMSubject: New from Australia Hi all,I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx. I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my left side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet). Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia. Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?Cheers, Sutherland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Mitch, the first thing we did was a 2-day sleep study looking for narcolepsy, even though I knew I hadn't fallen asleep. I hate to admit it, but I have fallen asleep while driving & that's not what happened this time. I think it just slowed down my neurons, or something! Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: mjcv29a@...Date: Fri, 15 Oct 2010 00:08:26 -0400Subject: Re: New from Australia Briefly, the only time I have been out of pain in ten years was when I was on a high dose of Neurontin. I was thrilled until one day on the way to work I stopped at a stop sign and all of a sudden a honk jarred me and I noticed their were 4 cars behind me. During the day I zonked out working on patients but covered myself each time until their was a couple in the treatment room and one of them woke me up and said I was in the middle of a sentence when I just fell asleep standing. It gave me Narcolepsy. I had to have some one drive me until it got out of my system. Pity Mitch New from Australia Hi all,I've just joined the group, good to find you here -I'm , 46, and I live in Australia's capital Canberra. I'm an author and graphic designer.I developed homonymous quandrantanopia (now deteriorated to hemianopia) about a month ago, and ended up with 3 weeks in hospital. After a ton of the usual scans (CT, MRI etc), the MRI with contrast revealed 'nebulous' lesions behind the optic chiasm and in the peduncle of my brain. A CT angiogram ruled out vasculitis, and my lumbar puncture was basically normal, although protein levels were a little high, ruling out MS (and the lesions aren't typical of MS anyway). My neurologist thinks that NS is the most likely Dx.I also have paresthesia in my right arm, which keeps progressing every few days. My forearm now feels quite cold as well as numb. I've been on prednisolone (60mg/day) for the past week, no improvement in m visual field loss (which is now at around 30% of my whole field, most of my l eft side). I'm not allowed to drive. I'm also on Neurontin (only for a few days so far, too early to tell if it's helping yet).Other symptoms I've had over the past 4-5 years : 6th nerve palsy, periodic loss of my senses of taste and smell, weird 'nerve' sensations, onycholysis, horrible itchy raised red skin rashes on my lower legs in the summer,very painful feet/heels ... it seems to be adding up to a chronic version of NS, doesn't it? I also have fibromyalgia.Feeling pretty discouraged at the lack of improvement in my vision - how long can the steroids take to effect any change (if any is possible)?Cheers, Sutherland Quote Link to comment Share on other sites More sharing options...
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