Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Jayne I'm so happy to hear that you called your Dr. and got something else to help you. Remember they're just Dr's and they don't know how things effect the individual if you don't speak up. I pay a lot of money for my Dr because of course he's out of network with my health plan and I get every penny worth. Also remember that your husband I'm sure is like all of our husbands and wives.... We all with PA are going through this and it's painful and literally changes our lives as we once knew it, but just like with cancer or some other form of diseases we are not the only ones suffering from it.... Our significant others as well as our children do too. My husband tries very hard to have compassion and sympathy but, what I feel the appropriate amount is, is not necessarily his.... Especially being a Mother we're not allowed to get sick or run down but, it does happen you all just need to understand that this is a condition and you will find a way to keep it under control so you can resume a real life by our standards. And remember to never settle on your treatment... And I'm with you through it for the long haul!!!!! Take care Jayne!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Im glad to hear that you have been on mtx. just a bit longer and also are not finding the results you'd hope to. I thought it was in my head. Im trying to be positive. Thanks for sharing karen --- Shayne Dillinger <SDillinger@...> wrote: > Hello, > > Went to the RA this morning for a regular visit. He > upped my MTX to 10mg from 7.5mg a week. He said > this is a normal progression and that we would give > the 10mg's a couple of months and then look a upping > the dose again. Of course the goal is remission. > > , > > I've only been on MTX for three months now and am > seeing very limited results so far. I'm 6'-4 " and > weigh 240lbs so the Dr. said he would not be > surprised if it takes a short time to build to a > higher dosage. In the meantime I get most of my > relief with antinflam's. I've tried about six or > seven including Celebrex and Arthrotec. You'll have > to find the one that works for you. Once I found > that Clineril works so good for me it's gotten a > little easier. I have pain every day, but at least > I can get around. I have read from others on this > list that have been on Metho. for many years with > out adverse side effects. You need to have regular > blood tests and just be careful. I've learned an > awful lot right here on this list. > > Bye the way I'm 32. PA seems to like hitting our > generation. > > Good luck > Shayne > > > ------------------------------------------------------------------------ > Please visit our new web page at: > http://www.wpunj.edu/icip/pa > <HR> <html> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 <<<<<<Love your speech. If you have explained why you were asked to give it(I'm not doubting your ability, just their interest) and what theresponse was, I missed it. Can you tell us more?> HI, , thanks! I delivered this speech at the Israeli Parliament on the occasion of teh officila opening ceremony of national mental health week. the effect was very positive and immediate,. I was really amazed and even a little embarassed to see all the people coming to greet me at the end of the ceremony. some said they never heard of this syndrome, some said they finally had someone articulate how they feel, others thanked me for agreeing to " come out " and speak abou it , etc. there were mostly professionals there (psychiatrists, psychologists, OTs and STs etc as well as parents, and members of the government. two parliamnet members even looked for me afterwards to offer help with the educational system! so now we are trying to tie all these into actual DOING for kids with AS in this country. It is not easy , politicians are politicians, but I do feel that speaking out at this occasion has raise AS issues here one step up. I am about to meet yet another parliamnet member of the education committee soon. Again I have to say that participation in this list has made me go places I never thought to visit! the exchange of ideas and experiences here is invaluable, and all of you have helped me grow....... I never thought in my life that I would be going this far, but borg is borg, right ? :-) F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Dear and group, My kids have decided I need more exercise which I do. The question is what would be the safest thing I can start out with? I'd like to at least get my upper body strenght back. I work a hard 32 hours on weekends then sit around moaning the rest of the week. I walk only rarely and only for short distances. I don't have access to a pool. Do you think leg and wrist weights would be a good or bad idea? I've been making myself walk more the last two days which have set the nerves in my legs to doing all kinds of crazy things. Tomarrow I'm gona pull myself up on a horse if it's the last thing I ever do. I've lost 65 pounds in two years and I think I'm losing muscle now. Any suggestions? , you sound like you probally know more about exercise than any doctor around here. If I do have surgery, I want to be in the best shape I can get in before I do. Thanks, Terry > > > Terry, > For me I found 3 of the top neurologist in my area in California by getting references from other back > patience, nurses, and my primary care physician. He is a master in his field but has terrible bedside > manners ... but I would still select him at the drop of a dime! What you wants is an expert surgeon not > a nurse maid. There are also websites that you can visit that show you Mal-Practice cases against > physician ... do a google search and I am sure you will find it. BTW: what are you getting done or what > are your symptoms? > > - > > > spinal problems@...: tjking71730@...: Tue, 1 Jul 2008 17:16:15 +0000Subject: When I finally get to UMAS...questions > > > > > Dear group,O.K., when I finally go to Little Rock to the neurologist what are some questions I need to ask? I don't want to go in blind, I'd like to know what to ask and look for. How will I know if he or she is just blowing smoke or is a quack?Terry > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Terry, If at all possible drive to a pool, even a friends pool. If you just can't or there isn't one is there a lake or an ocean. If not then this is what I would recommend. Using elastic bands (possible bicycling tire inner tubes.. the also make devices specifically for rehab) lie on the ground and slowly start using your arms to pull on the elastic bands. it is important to lay down to isolate / negate any stress on your spine. As an example... I had to move to large Lazy Boys chairs today but to move them in the conventional manner would have hurt my back. So I got on the carpet on my back and just used my arms to drag the chairs a little at a time.. yes when I pulled the chair while lying on my back I moved a little but so what .. it only took a few attempts to get the chair where I wanted them and it absolutely did no harm to my back. If you are strong enough or later on .. you can use similar technique with free weights but I would always START SLOW and just do a little and then wait a day to see how your body responds. Let me know if that helps you. Another technique is to lie on a table and let your arms hang down while you lift very light weights and remember to ensure no tension on your back. Hope that helps. Be creative and see what works for you. I admire your determination! - spinal problems@...: tjking71730@...: Wed, 2 Jul 2008 05:02:26 +0000Subject: Re: to and all Dear and group,My kids have decided I need more exercise which I do. The question is what would be the safest thing I can start out with? I'd like to at least get my upper body strenght back. I work a hard 32 hours on weekends then sit around moaning the rest of the week. I walk only rarely and only for short distances. I don't have access to a pool. Do you think leg and wrist weights would be a good or bad idea? I've been making myself walk more the last two days which have set the nerves in my legs to doing all kinds of crazy things. Tomarrow I'm gona pull myself up on a horse if it's the last thing I ever do. I've lost 65 pounds in two years and I think I'm losing muscle now. Any suggestions? , you sound like you probally know more about exercise than any doctor around here. If I do have surgery, I want to be in the best shape I can get in before I do.Thanks,Terry>> > Terry,> For me I found 3 of the top neurologist in my area in California by getting references from other back > patience, nurses, and my primary care physician. He is a master in his field but has terrible bedside > manners ... but I would still select him at the drop of a dime! What you wants is an expert surgeon not> a nurse maid. There are also websites that you can visit that show you Mal-Practice cases against > physician ... do a google search and I am sure you will find it. BTW: what are you getting done or what > are your symptoms?> > -> > > spinal problems@...: tjking71730@...: Tue, 1 Jul 2008 17:16:15 +0000Subject: [spinal Disorders Support] When I finally get to UMAS...questions> > > > > Dear group,O.K., when I finally go to Little Rock to the neurologist what are some questions I need to ask? I don't want to go in blind, I'd like to know what to ask and look for. How will I know if he or she is just blowing smoke or is a quack?Terry > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hey Terry! I strongly reccommend riding horses. If you have a good seat it lines the spine up the way it should be and actually provides some relief for me. I know several people that react the same way! Just be careful! I love swimming for exercise, but I have to be careful with it because if I pull too much the wrong way I get severe pains. As long as I'm careful it does help! > > Dear and group, > My kids have decided I need more exercise which I do. The question > is what would be the safest thing I can start out with? I'd like to > at least get my upper body strenght back. I work a hard 32 hours on > weekends then sit around moaning the rest of the week. I walk only > rarely and only for short distances. I don't have access to a pool. > Do you think leg and wrist weights would be a good or bad idea? I've > been making myself walk more the last two days which have set the > nerves in my legs to doing all kinds of crazy things. Tomarrow I'm > gona pull myself up on a horse if it's the last thing I ever do. > I've lost 65 pounds in two years and I think I'm losing muscle now. > Any suggestions? , you sound like you probally know more about > exercise than any doctor around here. If I do have surgery, I want > to be in the best shape I can get in before I do. > Thanks, > Terry > > > > > > > > > > > > Terry, > > For me I found 3 of the top neurologist in my area in > California by getting references from other back > > patience, nurses, and my primary care physician. He is a > master in his field but has terrible bedside > > manners ... but I would still select him at the drop of a dime! > What you wants is an expert surgeon not > > a nurse maid. There are also websites that you can visit that > show you Mal-Practice cases against > > physician ... do a google search and I am sure you will find > it. BTW: what are you getting done or what > > are your symptoms? > > > > - > > > > > > spinal problems@: tjking71730@: Tue, 1 Jul > 2008 17:16:15 +0000Subject: When I > finally get to UMAS...questions > > > > > > > > > > Dear group,O.K., when I finally go to Little Rock to the > neurologist what are some questions I need to ask? I don't want to > go in blind, I'd like to know what to ask and look for. How will I > know if he or she is just blowing smoke or is a quack?Terry > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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