I'm so sorry Dale, another disorder to have to cope with..... I so hope that the iron infusion will help your RLS symptoms, you need it.
Take very good care of yourself,
Corrie
Leg Pain
Thank you.
I feel dreadful. I never told you how wonderful it was to talk to Dr. Earley. He is so knowledgeable. After being interviewed by a young assistant doctor for half an hour or more, they met and then came into see me. After reviewing the assistant's notes, he had more pointed questions. He spent close to half an hour with me, maybe more. I didn't notice the time.
Whenever I've gone to other doctors and been interviewed by their assistants beforehand, the visit with the doctor has been 5 minutes. I was so afraid that was going to happen here but, as you can see, it did not.
We even talked about how little most doctors know about prescribing medication. We laughed over a story I told him about trying to find a support group in NYC, which consists of one woman.
I only wish he were in NYC.
Dale
I feel dreadful. I never told you how wonderful it was to talk to Dr. Earley. He is so knowledgeable. After being interviewed by a young assistant doctor for half an hour or more, they met and then came into see me. After reviewing the assistant's notes, he had more pointed questions. He spent close to half an hour with me, maybe more. I didn't notice the time.
Whenever I've gone to other doctors and been interviewed by their assistants beforehand, the visit with the doctor has been 5 minutes. I was so afraid that was going to happen here but, as you can see, it did not.
We even talked about how little most doctors know about prescribing medication. We laughed over a story I told him about trying to find a support group in NYC, which consists of one woman.
I only wish he were in NYC.
Dale
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ViewsAskew
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I just love hearing a happy story about a doctor. Even when the news isn't what you wanted, having someone like that makes it a bit easier.
I wish he were in NY, too.....and Chicago, Minneapolis, Tuscon, and anywhere there isn't a Dr Rye or Dr Buchfurer. I know there are other good ones, because people write about them once in awhile....but they are just too few and far between.
I don't know a thing about myositis. In my quick research, it looks like it's a condition of inflammation of the muscles that may be associated with autoimmune disorders. It sounds like you may be in for some more testing, if that is the case, unless he's figured out why you have it already.
My best friend has lupus; she was on prednisone for about a year. It wasn't the happiest year of her life, but she got through it, the lupus chilled out, and she's doing OK now. I can imagine it's a bit scary being in a hotel room and worrying about it. I hope he can help you determine what to do about it and that your doctor back home can provide good follow up care.
I wish he were in NY, too.....and Chicago, Minneapolis, Tuscon, and anywhere there isn't a Dr Rye or Dr Buchfurer. I know there are other good ones, because people write about them once in awhile....but they are just too few and far between.
I don't know a thing about myositis. In my quick research, it looks like it's a condition of inflammation of the muscles that may be associated with autoimmune disorders. It sounds like you may be in for some more testing, if that is the case, unless he's figured out why you have it already.
My best friend has lupus; she was on prednisone for about a year. It wasn't the happiest year of her life, but she got through it, the lupus chilled out, and she's doing OK now. I can imagine it's a bit scary being in a hotel room and worrying about it. I hope he can help you determine what to do about it and that your doctor back home can provide good follow up care.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Polar Bear
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Hi Dale, I know that another condition is not news that you wanted to hear, but I trust you feel the visit was positive in that you have a diagnosis and the hope that the iron infusion will be of benefit.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Ann,
Yes, I am coming back in a couple of weeks for 2-3 days of testing to determine which type I have and a course of treatment. Dr. Earley also wants me to spend a night at the hospital taking a sleep test.
The future is up in the air for me right now. I do not believe I can pursue the new apartment. It needs a lot of repairs which I am not up to. I also don't know what type of medical care I'll need.
I really hope that the Myositis doctor here can recommend a good doctor in NYC that I can see for follow up treatment. From what I've read, you need to be closely monitored while taking the medications.
Well, I'm trying to keep all my chins up. Considering I gained 25 pounds this past year, that is no easy task.
A chin strap might help.
Dale
Yes, I am coming back in a couple of weeks for 2-3 days of testing to determine which type I have and a course of treatment. Dr. Earley also wants me to spend a night at the hospital taking a sleep test.
The future is up in the air for me right now. I do not believe I can pursue the new apartment. It needs a lot of repairs which I am not up to. I also don't know what type of medical care I'll need.
I really hope that the Myositis doctor here can recommend a good doctor in NYC that I can see for follow up treatment. From what I've read, you need to be closely monitored while taking the medications.
Well, I'm trying to keep all my chins up. Considering I gained 25 pounds this past year, that is no easy task.
A chin strap might help.
Dale
Dear Dale,
Good grief, the apartment folks put you thru that initiation process and the place needs repairs! Hey, if you want it, keep plugging away, and get a friend to help you fill out the forms and stay organized. OR you could just browse the classifieds and perhaps a perfect townhouse will pop up. By the by, you should love the prednisone, if you've never had it. I wonder if myositis is a little like neuropathy. Don't know too much about either, except they're another form of misery in the same realm as RLS. I know you'll be glad to get home so you can get back on your medications, assuming you can, with the new drug. I forget what all you do take, but I hope some kind of pain medicine is in the mix. Try laying on the floor and put your legs up in a chair, takes all the weight off the spine, and might help you relax. Hope you feel better soon and hang in.
GG
Good grief, the apartment folks put you thru that initiation process and the place needs repairs! Hey, if you want it, keep plugging away, and get a friend to help you fill out the forms and stay organized. OR you could just browse the classifieds and perhaps a perfect townhouse will pop up. By the by, you should love the prednisone, if you've never had it. I wonder if myositis is a little like neuropathy. Don't know too much about either, except they're another form of misery in the same realm as RLS. I know you'll be glad to get home so you can get back on your medications, assuming you can, with the new drug. I forget what all you do take, but I hope some kind of pain medicine is in the mix. Try laying on the floor and put your legs up in a chair, takes all the weight off the spine, and might help you relax. Hope you feel better soon and hang in.
GG
"It's not how old you are; it's how awful you feel."
I can't afford another apartment. The only reason I could afford this one was because it was VERY cheap. Now I know why. I am not in shape to fix up any apartment. I cannot even walk more than few steps.
I have been doing more research on Myositis. Only 50,000 people have it. There is no cure nor do they know how you get it. Treatment doesn't always help either. It seems the biggest place to deal with it is here in Baltimore. I don't know if I'll be able to find a doctor in NYC who knows how to deal with this illness. Hopefully they will have somebody to refer me to in NY.
It looks as though my life is about to go through a major change. I live alone and have no support system nearby.
I'm scared...very scared.
Dale
I have been doing more research on Myositis. Only 50,000 people have it. There is no cure nor do they know how you get it. Treatment doesn't always help either. It seems the biggest place to deal with it is here in Baltimore. I don't know if I'll be able to find a doctor in NYC who knows how to deal with this illness. Hopefully they will have somebody to refer me to in NY.
It looks as though my life is about to go through a major change. I live alone and have no support system nearby.
I'm scared...very scared.
Dale
Hey Sleuth, you were in my locale. Well close anyway.
With my recent experience. I think that getting the correct diagnosis is half the battle, then you can get the correct treatment, rather than trying different meds until you happen on one that eventually helps.
I've taken Prednisone (spelling?) way back in the days of my chemo treatments. It was given to help restore some energy and bulk. It definitely worked there, my appetite was constant, I ate so much in that period that I probably gained back 15 lbs in the two weeks after my first treatment.
After my 2nd treatment it was tapered to half per day, then half every other day and then nothing. As my strength returned the drug went away.
Weird side effect of it is what my doctor called "Frog face" when I told him that my face seemed to be puffed out, when at the time, I looked like a walking skeleton. My face didn't stay that way of course, it eventually deflated
With my recent experience. I think that getting the correct diagnosis is half the battle, then you can get the correct treatment, rather than trying different meds until you happen on one that eventually helps.
I've taken Prednisone (spelling?) way back in the days of my chemo treatments. It was given to help restore some energy and bulk. It definitely worked there, my appetite was constant, I ate so much in that period that I probably gained back 15 lbs in the two weeks after my first treatment.
After my 2nd treatment it was tapered to half per day, then half every other day and then nothing. As my strength returned the drug went away.
Weird side effect of it is what my doctor called "Frog face" when I told him that my face seemed to be puffed out, when at the time, I looked like a walking skeleton. My face didn't stay that way of course, it eventually deflated
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ViewsAskew
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Dale, I am so sorry you had to cancel....but it sounds like it was the right choice.
How much does it cost to live in Baltimore? It sounds terrifying, I imagine, to pick up and move there, but you're ready to move anyway. Of course, I say that because it's easy to think of things when you're not in the middle of it and it sounds so reasonable....much less so when you are the one doing it.
How much does it cost to live in Baltimore? It sounds terrifying, I imagine, to pick up and move there, but you're ready to move anyway. Of course, I say that because it's easy to think of things when you're not in the middle of it and it sounds so reasonable....much less so when you are the one doing it.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Dear Dale (Sleuth),
Bummer about the apartment, but at least that's one less thing for you to worry about. New York City's Presbyterian University Hospital (of Columbia and Cornell) is one of the best in the country, they're on East 68th Street, they have a vast neurology department. Their phone is 212-746-5454 and the website is www.nyp.org.
There is a board member for the Myositis Association who works in New York City:
Lawrence J. Kagen, M.D.
Attending Physician
Hospital for Special Surgery
Division of Rheumatology
535 East 70th Street
New York, NY 10021
p: 212-606-1449
lkagen01@gmail.com
Myositis has its own website, www.myositis.org, and they have their own forum there, where you can now have a second place to visit online and get support! It also has all sorts of resources, explains the disease, you name it, it's on there.
Your psychiatrist can actually prescribe you some medications that will help you on a temporary basis, until you can get in with NYC Presbyterian or other rheumatologist or neurologist. Since prednisone is the drug of choice for your myositis, your psychiatrist can give that to you, as well as the standard treatment for RLS which is any kind of codeine drug, like hydrocodone or Tylenol Codeine #3, among others. Since that doc is the one you always see (I cannot recall if you see a regular doc), I think they will do this for you until you can get set up at NYC Presbyterian or other specialist
As for being alone, there is a way to have a friend, and that is to go to the church nearest to your home, and talk to the minister. He can hook you up with some ladies in his church who would come to see you perhaps once a week and give you moral support, check in on you, that sort of thing. Depending on how busy he is, he or the associate pastor or one of their wives will probably do this initially.
As for the racket next door, please get some earplugs at the drugstore. You can ask the pharmacist what are the best kind. Also, Ann (ViewsAskew) suggested some special ear plugs to another poster, you can get them at a music store. Frankly, I'm glad you don't have to move, you really cannot do that right now in the condition you're in.
In the evenings, presumably when they stop work, you can take advantage of that quiet by taking a very warm bath by candlelight. It is good for myositis. Also, if you'll regularly do some very simple stretching exercises, that is also recommended for keeping the effects of myositis from getting worse, and will also reduce the stress from you whole situation.
Took me a while to get all this together for you, but I hear your cries for help, and I did the best I could, so sorry if it's a little scattered and long. I know just how scared you are... I am older and somewhat isolated, I can't go anywhere because of the effects of a car accident (and of course RLS), so I particularly sympathize. But you simply must try some of the things I have suggested, in order to at least have SOME quality of life. I get help, I take medicine, and thus I am happy for the most part, even tho I can't do much, so you, too, should go and do the same. You should check out the video of the movie "Harry and Tonto," it's about an older man who is also stuck in a gentrified neighborhood, and how he went about overcoming it.
GG (dogeyed)
Bummer about the apartment, but at least that's one less thing for you to worry about. New York City's Presbyterian University Hospital (of Columbia and Cornell) is one of the best in the country, they're on East 68th Street, they have a vast neurology department. Their phone is 212-746-5454 and the website is www.nyp.org.
There is a board member for the Myositis Association who works in New York City:
Lawrence J. Kagen, M.D.
Attending Physician
Hospital for Special Surgery
Division of Rheumatology
535 East 70th Street
New York, NY 10021
p: 212-606-1449
lkagen01@gmail.com
Myositis has its own website, www.myositis.org, and they have their own forum there, where you can now have a second place to visit online and get support! It also has all sorts of resources, explains the disease, you name it, it's on there.
Your psychiatrist can actually prescribe you some medications that will help you on a temporary basis, until you can get in with NYC Presbyterian or other rheumatologist or neurologist. Since prednisone is the drug of choice for your myositis, your psychiatrist can give that to you, as well as the standard treatment for RLS which is any kind of codeine drug, like hydrocodone or Tylenol Codeine #3, among others. Since that doc is the one you always see (I cannot recall if you see a regular doc), I think they will do this for you until you can get set up at NYC Presbyterian or other specialist
As for being alone, there is a way to have a friend, and that is to go to the church nearest to your home, and talk to the minister. He can hook you up with some ladies in his church who would come to see you perhaps once a week and give you moral support, check in on you, that sort of thing. Depending on how busy he is, he or the associate pastor or one of their wives will probably do this initially.
As for the racket next door, please get some earplugs at the drugstore. You can ask the pharmacist what are the best kind. Also, Ann (ViewsAskew) suggested some special ear plugs to another poster, you can get them at a music store. Frankly, I'm glad you don't have to move, you really cannot do that right now in the condition you're in.
In the evenings, presumably when they stop work, you can take advantage of that quiet by taking a very warm bath by candlelight. It is good for myositis. Also, if you'll regularly do some very simple stretching exercises, that is also recommended for keeping the effects of myositis from getting worse, and will also reduce the stress from you whole situation.
Took me a while to get all this together for you, but I hear your cries for help, and I did the best I could, so sorry if it's a little scattered and long. I know just how scared you are... I am older and somewhat isolated, I can't go anywhere because of the effects of a car accident (and of course RLS), so I particularly sympathize. But you simply must try some of the things I have suggested, in order to at least have SOME quality of life. I get help, I take medicine, and thus I am happy for the most part, even tho I can't do much, so you, too, should go and do the same. You should check out the video of the movie "Harry and Tonto," it's about an older man who is also stuck in a gentrified neighborhood, and how he went about overcoming it.
GG (dogeyed)
"It's not how old you are; it's how awful you feel."
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Polar Bear
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Dogeyed, what a lovely supportive post.
Dale, this shows that you have friends here who care and are following your progress with best wishes.
Dale, this shows that you have friends here who care and are following your progress with best wishes.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Thank you so much. I am in tears over the work and heartfelt thoughts. My own family doesn't do that much for me.
I know about Columbia-Presbyterian Hospital. It's the first one I went to for the RLS. You're talking about the one on the East Side. I went to the up in the West Side. My RLS doctor now is affiliated with the East Side hospital.
I need to be tested first to find out which kind of Myositis I have. Dr. Earley thinks that's what I have and from the symptoms, I'm sure he's right. They are right on target. Once that is over, I can start treatment with a doctor in NYC.
For some reason, the name Lawrence Kagen sounds familiar to me. I'm sure my RLS doctor could refer me to him.
I have to talk to Dr. Earley next week to see what to do next. Perhaps I can be tested here in New York. He wanted me to come up there for a sleep test, though.
My psychiatrist would never prescribe pain killers for me. The pain is actually much less today.
I don't know what to do for the loneliness. I have let the RLS isolate me. I can't do anything in the evenings, which is when people do things. Whenever I tried to participate in discussion groups or take a class, the RLS would act up within ten minutes and I would be so uncomfortable I'd have to leave.
I am basically very depressed to boot. That makes it pretty hard to socialize.
I am not Christian, so would feel uncomfortable going to a church asking for help.
I have every kind of earplug you can imagine. None of them work. Right now, I can control the noise by shutting the window, putting on the AC and the television, so it is okay.
I am going to check out the myositis discussion board.
I cannot thank you enough for how much you care. It means so much to me.
Dale
I know about Columbia-Presbyterian Hospital. It's the first one I went to for the RLS. You're talking about the one on the East Side. I went to the up in the West Side. My RLS doctor now is affiliated with the East Side hospital.
I need to be tested first to find out which kind of Myositis I have. Dr. Earley thinks that's what I have and from the symptoms, I'm sure he's right. They are right on target. Once that is over, I can start treatment with a doctor in NYC.
For some reason, the name Lawrence Kagen sounds familiar to me. I'm sure my RLS doctor could refer me to him.
I have to talk to Dr. Earley next week to see what to do next. Perhaps I can be tested here in New York. He wanted me to come up there for a sleep test, though.
My psychiatrist would never prescribe pain killers for me. The pain is actually much less today.
I don't know what to do for the loneliness. I have let the RLS isolate me. I can't do anything in the evenings, which is when people do things. Whenever I tried to participate in discussion groups or take a class, the RLS would act up within ten minutes and I would be so uncomfortable I'd have to leave.
I am basically very depressed to boot. That makes it pretty hard to socialize.
I am not Christian, so would feel uncomfortable going to a church asking for help.
I have every kind of earplug you can imagine. None of them work. Right now, I can control the noise by shutting the window, putting on the AC and the television, so it is okay.
I am going to check out the myositis discussion board.
I cannot thank you enough for how much you care. It means so much to me.
Dale