Hey guys!
Well, I'm in Memphis right now, at the hotel across from St. Judes hospital. I finished up all my tests for today, I had a pulmunary exam, an echocardiogram, and a chest x-ray. Tomorrow the fun stuff, I get my labs drawn to check my t/a levels for my thyroid(Which I have to fast for, blah). I also see my doctor and I'll see if she can shed any light on the rls/thyroid subject for me, and of course I'll relay the information on to you guys.
Today is a really bad day for me, I think it had something to do with the plane ride, but my legs feel like they're about to break in half from the strain. (It could also have something to do with the fact that I've walked about a million miles through the corridors of the hospital!) My rls is driving me crazy today, almost as bad as it was on Mother's Day, so I'm probably going to hop into a hot bath soon.
For those of you that are hypo, I found out something interesting from the woman who did my echo. Apparently there is a new drug for hypo that you don't have to take once per day, and it works without any side-effects that I can tell, and it works almost instantly once you take it. I don't know the name of the drug yet, but I'll find out tomorrow when I ask my doctor about it. Hopefully she'll prescribe it for me, and then I can relay the information on to you guys about it.
Also, I'm going to ask her if she knows about rls, and if she will give me anything for it. Heres hoping, but I doubt it. Anyways, if she does give something to me, I'll let you guys know what she gave me, and of course how it works on me.
Take care everyone
Doug
PS: This hotel is NICE!!!!!!
Memphis progress report(New thyroid information)
Memphis progress report(New thyroid information)
Struggling is a sign that you have not yet given up.
-
umpwidow
Good luck tomorrow, and glad your hotel's nice! 
Sorry your legs are so bad today, though. Lots of us don't do well on airplanes, so it's probably not surprising you're having trouble between that, the walking, the stress of the trip and tests.... and just being tired from it all.
Hang in there, Doug!
Sara
Sorry your legs are so bad today, though. Lots of us don't do well on airplanes, so it's probably not surprising you're having trouble between that, the walking, the stress of the trip and tests.... and just being tired from it all.
Hang in there, Doug!
Sara
Memphis day #2
Hey guys
Well, todays battery of tests are over. Here's the news so far.
My doctor couldn't seem to recall anything about the new thyroid drug, so I'm going back onto Synthroid. I talked to her about RLS, and she has indeed heard of it.
They actually ordered a few tests to be done about this, including me having to have blood drawn AGAIN specifically for the nuerologist about my rls. They are indeed going to prescribe me Sinemet for my legs, which is a good thing I suppose. I've never taken it before, so I hope it works out well. I won't find out til tomorrow though, they can't get the script to me today.
I was supposed to be done today, however they have ordered 3 additional tests to be done tomorrow. I have to see a radiation oncologist in regards to my dental problems (This is whether or not I'll need hyperbaric treatment so they can safely remove my destroyed teeth or not.) I also have a DEXA scan, which deals with my bone density to see whether or not I need to start a calcium supplementation, and a meeting with a clinician about that subject.
They are indeed going to work with me on my rls as well. They're scheduling me to actually come back and see THIER nuerologist about my legs, in about a month. My doctor is very sympathetic, and so sweet to me.
Due to full flight booking, I won't be able to catch a flight back home until Saturday morning.
Anyways, heres hoping the Sinemet helps me out.
Talk at you soon
Doug
Well, todays battery of tests are over. Here's the news so far.
My doctor couldn't seem to recall anything about the new thyroid drug, so I'm going back onto Synthroid. I talked to her about RLS, and she has indeed heard of it.
They actually ordered a few tests to be done about this, including me having to have blood drawn AGAIN specifically for the nuerologist about my rls. They are indeed going to prescribe me Sinemet for my legs, which is a good thing I suppose. I've never taken it before, so I hope it works out well. I won't find out til tomorrow though, they can't get the script to me today.
I was supposed to be done today, however they have ordered 3 additional tests to be done tomorrow. I have to see a radiation oncologist in regards to my dental problems (This is whether or not I'll need hyperbaric treatment so they can safely remove my destroyed teeth or not.) I also have a DEXA scan, which deals with my bone density to see whether or not I need to start a calcium supplementation, and a meeting with a clinician about that subject.
They are indeed going to work with me on my rls as well. They're scheduling me to actually come back and see THIER nuerologist about my legs, in about a month. My doctor is very sympathetic, and so sweet to me.
Due to full flight booking, I won't be able to catch a flight back home until Saturday morning.
Anyways, heres hoping the Sinemet helps me out.
Talk at you soon
Doug
Struggling is a sign that you have not yet given up.
-
umpwidow
)
Everything done
Hey guys,
Well, all the tests are over and done with, so I can finally relax. They actually FedExed my Sinemet back home for some reason, but they gave me 4 pills to hold me over til I get back home. I've taken one, but it hasn't hit me yet, so we'll see what happens.
As it turns out, I'm going to need hyperbaric treatment after all for my teeth, which means sometime I'm going to have to spend a few weeks out here. I believe she said a week of hyperbaric treatment before the surgery, then a week of it afterwards. It's definatly going to be interesting.
They changed my dosage of synthroid to .088mg, when I was originally on .05mg. I'm confused though, isn't that an increase in dosage? If I was losing weight on .05mg (just a reminder, I'm hypothyroid), why would they give me more of it? Or am I just confused? Oh well, they know best, after all they were doing bloodwork for it.
I have to come back out here on June 29th-30th, and that's when I'll see the nuerologist specifically about my legs.
Talk to you guys soon.
Doug
Well, all the tests are over and done with, so I can finally relax. They actually FedExed my Sinemet back home for some reason, but they gave me 4 pills to hold me over til I get back home. I've taken one, but it hasn't hit me yet, so we'll see what happens.
As it turns out, I'm going to need hyperbaric treatment after all for my teeth, which means sometime I'm going to have to spend a few weeks out here. I believe she said a week of hyperbaric treatment before the surgery, then a week of it afterwards. It's definatly going to be interesting.
They changed my dosage of synthroid to .088mg, when I was originally on .05mg. I'm confused though, isn't that an increase in dosage? If I was losing weight on .05mg (just a reminder, I'm hypothyroid), why would they give me more of it? Or am I just confused? Oh well, they know best, after all they were doing bloodwork for it.
I have to come back out here on June 29th-30th, and that's when I'll see the nuerologist specifically about my legs.
Talk to you guys soon.
Doug
Struggling is a sign that you have not yet given up.
Thanks for the update
Hi Doug,
I have been following your post, haven't kept up to well with the board lately. I wanted to give you a "hope you get the answers you need"......
I have a hard time with flying as well. I know that a plane trip brings trouble and try to plan best as possible to do the best I can. Normally that means medicating and sleeping if the flight is over an hour. I really have a hard time now, that I can't take my crochete or needle work. I do better if I have a deep thinking or totally mindless "something" to do. Maybe they will figure out a medication that will help with travel in the future for you. Until then keep yourself entertained.
But I'm a bit confused.......Did you go to St. Judes for your thyroid problems? Or the RLS? Both? I'd love to know about the hyperbaric chambers....what, why? You can even PM me, if you prefer not to talk about it publically.
Sorry, I don't mean to be nosy, but I love to understand what someone is going through and why. If this is offensive, I apologize in advance.......
I fine it easier to ask questions, than to NOT ask.
My husband is in the middle of endless bloodwork and medication level checks. Not to much fun and not always easy. There is suppose to be hope that they really will figure out what dose you need and it works great for you. So I'll hang in there with you both. Never have had to have the regular bloodwork, but the dose game is the pits.
I hope when you get home things are restful before your trip back. Thanks for the intersting post.
Take care.
I have been following your post, haven't kept up to well with the board lately. I wanted to give you a "hope you get the answers you need"......
I have a hard time with flying as well. I know that a plane trip brings trouble and try to plan best as possible to do the best I can. Normally that means medicating and sleeping if the flight is over an hour. I really have a hard time now, that I can't take my crochete or needle work. I do better if I have a deep thinking or totally mindless "something" to do. Maybe they will figure out a medication that will help with travel in the future for you. Until then keep yourself entertained.
But I'm a bit confused.......Did you go to St. Judes for your thyroid problems? Or the RLS? Both? I'd love to know about the hyperbaric chambers....what, why? You can even PM me, if you prefer not to talk about it publically.
Sorry, I don't mean to be nosy, but I love to understand what someone is going through and why. If this is offensive, I apologize in advance.......
I fine it easier to ask questions, than to NOT ask.
My husband is in the middle of endless bloodwork and medication level checks. Not to much fun and not always easy. There is suppose to be hope that they really will figure out what dose you need and it works great for you. So I'll hang in there with you both. Never have had to have the regular bloodwork, but the dose game is the pits.
I hope when you get home things are restful before your trip back. Thanks for the intersting post.
Take care.
Back home!
Hey guys!
Well, I'm back home now, and man I still feel jet-lagged. Oh well, it'll pass in time.
Becat, nah you aren't being nosy, and you don't have to apologize! Allow me to explain.
I go out to St. Judes for follow-up examinations to see if any lingering effects from my childhood cancer will affect my daily life, and to see if there is any chance of relapse and such. My thyroid problem is a side effect of the radiation therapy they did to kill the cancer cells, and my RLS is related to my thyroid.
As for the hyperbaric chamber treatment, I'm sure you all are familiar with SCUBA divers getting the 'bends' when they come up from the deeper water too quickly. The hyperbaric treatment involves me being placed into a small sealed chamber, and being fed 100% pure oxygen for an extended period. The reason they told me they have to do this, is because when the radiation killed the roots in my teeth, it also damaged the nerves and such that would allow my mouth to heal itself. This is apparently the reason that no local dentist will do anything about my damaged teeth.
The hyperbaric treatment would basically ensure that my mouth healed up properly after all my teeth have been extracted.
I hope that clears things up for you Becat, if you have any more questions, don't hesistate to ask me!
Doug
PS: The sinemet is working ok, it doesn't get rid of my RLS all the way though. I'm on the 25/100 strength, the lowest strength they have. The label says to take them at bedtime, but my RLS happens all day, so I've been taking them when I need them. Too bad they only last about 3-4 hours!
Well, I'm back home now, and man I still feel jet-lagged. Oh well, it'll pass in time.
Becat, nah you aren't being nosy, and you don't have to apologize! Allow me to explain.
I go out to St. Judes for follow-up examinations to see if any lingering effects from my childhood cancer will affect my daily life, and to see if there is any chance of relapse and such. My thyroid problem is a side effect of the radiation therapy they did to kill the cancer cells, and my RLS is related to my thyroid.
As for the hyperbaric chamber treatment, I'm sure you all are familiar with SCUBA divers getting the 'bends' when they come up from the deeper water too quickly. The hyperbaric treatment involves me being placed into a small sealed chamber, and being fed 100% pure oxygen for an extended period. The reason they told me they have to do this, is because when the radiation killed the roots in my teeth, it also damaged the nerves and such that would allow my mouth to heal itself. This is apparently the reason that no local dentist will do anything about my damaged teeth.
The hyperbaric treatment would basically ensure that my mouth healed up properly after all my teeth have been extracted.
I hope that clears things up for you Becat, if you have any more questions, don't hesistate to ask me!
Doug
PS: The sinemet is working ok, it doesn't get rid of my RLS all the way though. I'm on the 25/100 strength, the lowest strength they have. The label says to take them at bedtime, but my RLS happens all day, so I've been taking them when I need them. Too bad they only last about 3-4 hours!
Struggling is a sign that you have not yet given up.
Hi Doug
Hi Doug,
I'm so glad your home. Feels good doesn't it, tired and all. I hope the flight home was easier.
Thank so much for explaining. I thought that was going to be the answer, but just wanted my facts straight.
Wow, You've had a lifetime already haven't you. I think that the idea of pure oxygen as a healing tool is awesome. Yes, I have a good friend that had the bends after diving, so he and I had talked about the chamber before.
I certainly can't blame you for trying what they have to offer to save your teeth. I hope all the other test prove your C-Free and no chance of that coming back.
I think many would tell you that if your RLS is 24/7 spreading out the Sinemet is best. Not all docs agree, but many of us found it to be helpful. Sinemet is fast acting, but your right not a long lasting product overall. I was told by one doc that suffers with RLS, that he uses it for plane trips, because it did act so fast.
Doug your attitude sounds pretty awesome for someone going through so much. I hope that you have a equally wonderful support team local with you. I really have enjoyed reading your story. God Bless and glad your here....super glad your home for a while.
Thanks for sharing.
I'm so glad your home. Feels good doesn't it, tired and all. I hope the flight home was easier.
Thank so much for explaining. I thought that was going to be the answer, but just wanted my facts straight.
Wow, You've had a lifetime already haven't you. I think that the idea of pure oxygen as a healing tool is awesome. Yes, I have a good friend that had the bends after diving, so he and I had talked about the chamber before.
I certainly can't blame you for trying what they have to offer to save your teeth. I hope all the other test prove your C-Free and no chance of that coming back.
I think many would tell you that if your RLS is 24/7 spreading out the Sinemet is best. Not all docs agree, but many of us found it to be helpful. Sinemet is fast acting, but your right not a long lasting product overall. I was told by one doc that suffers with RLS, that he uses it for plane trips, because it did act so fast.
Doug your attitude sounds pretty awesome for someone going through so much. I hope that you have a equally wonderful support team local with you. I really have enjoyed reading your story. God Bless and glad your here....super glad your home for a while.
Thanks for sharing.
Hi Doug
Hi Doug,
I found your posts to be interesting. I haven't experienced all of the things you have, but I am hypo and was just diagnosed with RLS. Please keep your experiences coming. I have never heard of Sinemet and may ask my doc about it.
(I, too, am on Synthroid.)
Again....TY and keep it coming.
CC
I found your posts to be interesting. I haven't experienced all of the things you have, but I am hypo and was just diagnosed with RLS. Please keep your experiences coming. I have never heard of Sinemet and may ask my doc about it.
(I, too, am on Synthroid.)
Again....TY and keep it coming.
CC
Good luck with everything Doug.
Sinemet has been on the market for at least 10 yrs. It is a drug for Parkinsons disease, but is found to help RLS. It is a dopamine precursor - dopamine is an important neurotransmitter.
One word of advice: look up the side effects of this drug, and if you believe you are developing any of these symptoms at any time then immediately report them to your doc.
My cousin had some problems with this drug, but only after taking it for 10 yrs.
Athena
Sinemet has been on the market for at least 10 yrs. It is a drug for Parkinsons disease, but is found to help RLS. It is a dopamine precursor - dopamine is an important neurotransmitter.
One word of advice: look up the side effects of this drug, and if you believe you are developing any of these symptoms at any time then immediately report them to your doc.
My cousin had some problems with this drug, but only after taking it for 10 yrs.
Athena
I haven't noticed any side-effects yet with the Sinemet, but I think it's losing it's effectiveness on me already.
The first day I took it, it was pretty good, no symptoms for a few hours, but I've taken 6 of them today, and I'm still noticing symptoms. All in all I've taken 14 of them since I got them on the 28th of last month. I see the nuerologist at St. Judes at the end of this month specifically for my RLS, so we'll see what happens.
Has anyone ever noticed weather conditions affecting thier legs? It rained today, and it seemed to make my legs feel worse.
The first day I took it, it was pretty good, no symptoms for a few hours, but I've taken 6 of them today, and I'm still noticing symptoms. All in all I've taken 14 of them since I got them on the 28th of last month. I see the nuerologist at St. Judes at the end of this month specifically for my RLS, so we'll see what happens.
Has anyone ever noticed weather conditions affecting thier legs? It rained today, and it seemed to make my legs feel worse.
Struggling is a sign that you have not yet given up.
Hi, Doug--
I've been following your updates, but never got a chance to comment. Glad you're home safe, got so much testing done, and such. Sorry the drug's already not working so well. How FRUSTRATING!
Just wanted to say that YES, we've discussed it here before that there are some environmental factors that seem to affect a number of us. (Athena, if you read this, I should have posted this with the other factors I mentioned in what makes RLS worse for me.)
I have some additional trouble when the weather changes, though there's not one particular barometric pressure that's good and one that's bad, if you know what I mean. It's more just a problem when it switches, from what I can tell.
I also have a fair amount of trouble with changes in elevation. I live at 5500 feet, so that might be part of why my RLS progressed as much as it did when it did-- I noticed it much more right after we moved here (though I was also exhausted a lot of the time from work we were doing, so I didn't connect it with the different elevation right away.) When we travel, I have noticed that driving up to a higher elevation campground, for example, at the end of a busy day, will make my RLS go NUTS.
Hang in there, Doug!
Sara
I've been following your updates, but never got a chance to comment. Glad you're home safe, got so much testing done, and such. Sorry the drug's already not working so well. How FRUSTRATING!
Just wanted to say that YES, we've discussed it here before that there are some environmental factors that seem to affect a number of us. (Athena, if you read this, I should have posted this with the other factors I mentioned in what makes RLS worse for me.)
I have some additional trouble when the weather changes, though there's not one particular barometric pressure that's good and one that's bad, if you know what I mean. It's more just a problem when it switches, from what I can tell.
I also have a fair amount of trouble with changes in elevation. I live at 5500 feet, so that might be part of why my RLS progressed as much as it did when it did-- I noticed it much more right after we moved here (though I was also exhausted a lot of the time from work we were doing, so I didn't connect it with the different elevation right away.) When we travel, I have noticed that driving up to a higher elevation campground, for example, at the end of a busy day, will make my RLS go NUTS.
Hang in there, Doug!
Sara
hi doug, I have had some good luck with sinemet, but it wears off quickly. I take two at bedtime and another in the middle of the night, if I wake with those awful sensations. And sometimes during the day. If I don't have any feelings of that electricity buzzing or anything, I try not to take them at all, because I don't want them to loose their affect. They seem to give relief about 1/2 hour after taking them so I think they are the most wonderful drug ever invented. I also noticed that if I add a codeine tablet with the sinemet it works even better, but I rarely do that. My doctor is good about letting me experiment and do whatever works for me. I am looking forward to hearing more about your testing, and hope you find help for all your things soon. Tina
RLS, SLE (Lupus) and Asthma