Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 , You need a GOOD pulmonologist. I would definitely be getting second opinions, and if you find a doc with a brain-- transfer your care to him. I saw my Rheumi today, explained what was going on-- he was upset that they've not done a heart cath-- and that gives them the exact pressure, and there is new meds that work well to control the PH. Yeah--- you need new docs. Love ya, Tracie I've been on lasix for years, and I take 3 blood pressure pills.. they increased the lasix from 80 to 160 omg, I couldn't tolerate that.. my kidney's which are quit frail just couldn't stand that.. I go into renal failure really easy.. and that would shove me over the edge.. I start with the most horrilbe jerking.. its painful as in its a shock type sensation.. and it appears like someone with turretts's syndrome.. I don't like/want it.. so nothing different as of now.. Then again, I have Vanderbilt doctors.. I may seek another opinion, if you think I should Re: Re: seizures , Have they put you on anything for it? In a message dated 2/28/2008 4:27:41 P.M. Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes: I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live.. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 , You need a GOOD pulmonologist. I would definitely be getting second opinions, and if you find a doc with a brain-- transfer your care to him. I saw my Rheumi today, explained what was going on-- he was upset that they've not done a heart cath-- and that gives them the exact pressure, and there is new meds that work well to control the PH. Yeah--- you need new docs. Love ya, Tracie I've been on lasix for years, and I take 3 blood pressure pills.. they increased the lasix from 80 to 160 omg, I couldn't tolerate that.. my kidney's which are quit frail just couldn't stand that.. I go into renal failure really easy.. and that would shove me over the edge.. I start with the most horrilbe jerking.. its painful as in its a shock type sensation.. and it appears like someone with turretts's syndrome.. I don't like/want it.. so nothing different as of now.. Then again, I have Vanderbilt doctors.. I may seek another opinion, if you think I should Re: Re: seizures , Have they put you on anything for it? In a message dated 2/28/2008 4:27:41 P.M. Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes: I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live.. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 I've been on Imuran for many years. They didn't want to put me on Methotrexate because they said it was the most toxic of all of them. If my symptoms get so bad I can't function, then maybe we'll consider it. Not there yet. I was also told years ago by my neurologist to take Folic Acid and have done so every day. My Rheumatologist mentioned taking more Vitamin D so since June I have been taking 1000 IU daily. My symptoms have settled down now. Probably due to increasing the Prednisone again. I only upped it 1/2 mg every other day. Sarcoid, at least in my case, is SO sensitive to the stuff. So now my dosage is 11 1/2 mg every other day, which isn't so bad. I am going to take my sweet time lowering it again. The doctors also want me to continue taking Tegretol (yuck). The first couple of days I felt like a drunken sailor. Doc says I should break up the pills and spread the dose out more over the day. Will try that tomorrow. My 2 local doctors (family GP and internist) are still disagreeing as to what the spasms were. The internist thinks it was some type of Dystonia, brought on by demyelanation of the nerves, although you usually see that with a drug reaction. My GP doesn't think so, but doesn't know exactly what to call it. Imagine that, they don't know what the symptoms are, for a change! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 I've been on Imuran for many years. They didn't want to put me on Methotrexate because they said it was the most toxic of all of them. If my symptoms get so bad I can't function, then maybe we'll consider it. Not there yet. I was also told years ago by my neurologist to take Folic Acid and have done so every day. My Rheumatologist mentioned taking more Vitamin D so since June I have been taking 1000 IU daily. My symptoms have settled down now. Probably due to increasing the Prednisone again. I only upped it 1/2 mg every other day. Sarcoid, at least in my case, is SO sensitive to the stuff. So now my dosage is 11 1/2 mg every other day, which isn't so bad. I am going to take my sweet time lowering it again. The doctors also want me to continue taking Tegretol (yuck). The first couple of days I felt like a drunken sailor. Doc says I should break up the pills and spread the dose out more over the day. Will try that tomorrow. My 2 local doctors (family GP and internist) are still disagreeing as to what the spasms were. The internist thinks it was some type of Dystonia, brought on by demyelanation of the nerves, although you usually see that with a drug reaction. My GP doesn't think so, but doesn't know exactly what to call it. Imagine that, they don't know what the symptoms are, for a change! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Tracie, I've been spreading my wings a bit, by seeing a Hematologist and ENT at a different competative hospital with Vanderbilt.. which has gotten me some good results so far... Vanderbilt "HATES IT" but lets face it.. I'm just trying to improve my quality of life.. and they haven't done alot so far to help out.. Anyway.. I'll talk to the Hematologist next visit and see if he will suggest someone to take a look at the problem.. Thanks, Re: Re: seizures , Have they put you on anything for it? In a message dated 2/28/2008 4:27:41 P.M. Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes: I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live.. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.2/1305 - Release Date: 2/29/2008 6:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 Tracie, I've been spreading my wings a bit, by seeing a Hematologist and ENT at a different competative hospital with Vanderbilt.. which has gotten me some good results so far... Vanderbilt "HATES IT" but lets face it.. I'm just trying to improve my quality of life.. and they haven't done alot so far to help out.. Anyway.. I'll talk to the Hematologist next visit and see if he will suggest someone to take a look at the problem.. Thanks, Re: Re: seizures , Have they put you on anything for it? In a message dated 2/28/2008 4:27:41 P.M. Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes: I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live.. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.2/1305 - Release Date: 2/29/2008 6:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 , what if the bactiera wasn't susceptable to that particular antibiotic? Those things can be tricky.. I'm sure they thought of this.. I too have the dry mouth and my gland on the Right stays enlarged and is painful at times..The dry mouth is unbearable at times.. and with sleep apnea, I use a heated humidifer with my bipap to sleep or else that would be impossible.. still there are days that that doesn't work.. what do we do? I hope you're feeling better by now. and they've gotten what ever happened under control.. I'm having throat problems again, I can't whistle.. I can't sing and am really very hoarse.. I use to sing semi professional, and that really upsets me to think I may not be able to do this in the future.. In December I had a lesion removed that was begnin.. they say just a skin tag.. nothing related to Sarc.. however, I think its already grown back.. I see the ENT on Tuesday.. Hugs, Re: seizures Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.2/1305 - Release Date: 2/29/2008 6:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2008 Report Share Posted March 1, 2008 , what if the bactiera wasn't susceptable to that particular antibiotic? Those things can be tricky.. I'm sure they thought of this.. I too have the dry mouth and my gland on the Right stays enlarged and is painful at times..The dry mouth is unbearable at times.. and with sleep apnea, I use a heated humidifer with my bipap to sleep or else that would be impossible.. still there are days that that doesn't work.. what do we do? I hope you're feeling better by now. and they've gotten what ever happened under control.. I'm having throat problems again, I can't whistle.. I can't sing and am really very hoarse.. I use to sing semi professional, and that really upsets me to think I may not be able to do this in the future.. In December I had a lesion removed that was begnin.. they say just a skin tag.. nothing related to Sarc.. however, I think its already grown back.. I see the ENT on Tuesday.. Hugs, Re: seizures Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.2/1305 - Release Date: 2/29/2008 6:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 , I have throat problems also and even though I don't sing professionally it is something to me that is really aggrevating. Mine is from a cranial neuropathy and not from any kind of nodule on the cords. Could it be your problem too? Have they ever said anything about cranial neuropathy? I have been hoarse for as long as 90 days. When I have BP, I can't whistle either. Good thing I suck at whistling. Take care. Terri G. > > > I'm having throat problems again, I can't whistle.. I can't sing and am really very hoarse.. I use to sing semi professional, and that really upsets me to think I may not be able to do this in the future.. In December I had a lesion removed that was begnin.. they say just a skin tag.. nothing related to Sarc.. however, I think its already grown back.. I see the ENT on Tuesday..> > Hugs,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 , I have throat problems also and even though I don't sing professionally it is something to me that is really aggrevating. Mine is from a cranial neuropathy and not from any kind of nodule on the cords. Could it be your problem too? Have they ever said anything about cranial neuropathy? I have been hoarse for as long as 90 days. When I have BP, I can't whistle either. Good thing I suck at whistling. Take care. Terri G. > > > I'm having throat problems again, I can't whistle.. I can't sing and am really very hoarse.. I use to sing semi professional, and that really upsets me to think I may not be able to do this in the future.. In December I had a lesion removed that was begnin.. they say just a skin tag.. nothing related to Sarc.. however, I think its already grown back.. I see the ENT on Tuesday..> > Hugs,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Cranial nerve issues paralyzed my right vocal cord and right side of throat in 2004. Couldn't speak even slightly above a whisper for 9 months. Couldn't eat anything but oatmeal and scrambled eggs(lost 35 lbs). A throat specialist put a video camera thingy down my throat and filmed the paralysis. It was called a FEST test. Once the neuropathy was under control I went to a speech pathologist for many months and learned to talk again, in a different way. Hard to explain. At any rate, whenever my neuropathy wants to flare up (like this week) my voice gets horse. I can lose it for days, sometimes weeks at a time. I don't panic anymore. I always expect it to come back eventually. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Cranial nerve issues paralyzed my right vocal cord and right side of throat in 2004. Couldn't speak even slightly above a whisper for 9 months. Couldn't eat anything but oatmeal and scrambled eggs(lost 35 lbs). A throat specialist put a video camera thingy down my throat and filmed the paralysis. It was called a FEST test. Once the neuropathy was under control I went to a speech pathologist for many months and learned to talk again, in a different way. Hard to explain. At any rate, whenever my neuropathy wants to flare up (like this week) my voice gets horse. I can lose it for days, sometimes weeks at a time. I don't panic anymore. I always expect it to come back eventually. - Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.