[momofrsdsjk]

I am the mother and part time care giver for my 41 year old daughter. She has had RSD for 4 years and she has gotten progressively worse. I would like to know of the sucess and or failure that any of you have had with Dr Rhodes in Texas...

Thank You

Barb

[debbiehub]

Originally Posted by momofrsdsjk

I am the mother and part time care giver for my 41 year old daughter. She has had RSD for 4 years and she has gotten progressively worse. I would like to know of the sucess and or failure that any of you have had with Dr Rhodes in Texas...

Thank You

Barb

If you go to "search this forum and type in "rhodes" you will see some posts. I went to Dr Rhodes in September. He knows alot about RSD and claims to have a 95% success rate. So far the machine has not worked for me or my friend that went with me. I do know someone who does great with it and I did meet a woman down there who was having success. I think it is like any treatment for RSD- works for some.....If you do decide to go pm me and I can tell you where to stay...

Debbie

[momofrsdsjk]

Debbie Thank you for responding, I don't know how to pm. This is my first time trying to connect with anyone on this site, even tho I have read your stories. Your stories have been my guide on trying to understand my daughter and what she is going thru, for that I thank ALL of you. She went to Dr Rhodes in Nov, his machine worked for a few days, but has not offered any relief since then. I wish I could pm you...

Thank you

barb

[gabbycakes]

Originally Posted by momofrsdsjk

Debbie Thank you for responding, I don't know how to pm. This is my first time trying to connect with anyone on this site, even tho I have read your stories. Your stories have been my guide on trying to understand my daughter and what she is going thru, for that I thank ALL of you. She went to Dr Rhodes in Nov, his machine worked for a few days, but has not offered any relief since then. I wish I could pm you...

Thank you

barb

Hi Barb,

So sorry to here about your daughter.

PM is very easy if you go to the "New member section" and post to one of the moderators they will be glad to help you. Just say can someone help me PM. I would do it put the moderators I'm sure prefer if they did it and they are such nice people so don't be intimidated.

Dr. Rhodes, I have know experience but I did the RSD walk in NYC this June and there was a team of people supporting him. I would take Debbiehub's path. I serched myself, there is a lot about him out there.

What part of the country do you live in? There are some great doctors in the NYC metro area.

Good Luck.

Gabbycakes

[debbiehub]

[QUOTE=momofrsdsjk;731718]Debbie Thank you for responding, I don't know how to pm. This is my first time trying to connect with anyone on this site, even tho I have read your stories. Your stories have been my guide on trying to understand my daughter and what she is going thru, for that I thank ALL of you. She went to Dr Rhodes in Nov, his machine worked for a few days, but has not offered any relief since then. I wish I could pm you...

Thank you

barb[/QUOTE

Do you contact him and tell him its not working- he will give you different protocols to try-i contact him every few days

[momofrsdsjk]

[QUOTE=debbiehub;731819]

Originally Posted by momofrsdsjk

Debbie Thank you for responding, I don't know how to pm. This is my first time trying to connect with anyone on this site, even tho I have read your stories. Your stories have been my guide on trying to understand my daughter and what she is going thru, for that I thank ALL of you. She went to Dr Rhodes in Nov, his machine worked for a few days, but has not offered any relief since then. I wish I could pm you...

Thank you

barb[/QUOTE

Do you contact him and tell him its not working- he will give you different protocols to try-i contact him every few days

Debbie, yes her husband contacts Dr Rhodes, he has changed protocols on the pm cycle but not on the am cycle since Nov 17th, Dr Rhodes keep telling her she has to be off all of her meds before the machine will help her, so she weaned off everything except lexapro, she is currently withdrawing from oxy,,,but getting no relief from anything else makes it even more difficult..Dr Rhodes told her it could take 6 months for the machine to work. even maybe a year...not sure she can take a year of this let alone 6 months...everytime we try something new, she seems to get worse, or it spreads...anyway thank you for listening..

barb

Gabby, we live in san diego area, she has had ketamine at ucla, with Dr Prager, works for awhile, but very expensive, has a scs implanted, but stopped working 1 month after it was placed. we have gone thru alot of options, but she continues to get NO relief....Again thank you for listening

Barb

[debbiehub]

I know what you are going thru...nothing has worked for me either and I am getting worse by the day...As far as Dr Rhodes machine...The jury is still out. I only run it for about 4 minutes a day,,,we can't even do my lower body where my rsd originally started because it cause it to go crazy. If you want to PM me just left click on my name and you will see how to do it...Keep in touch

Debbie

[gabbycakes]

[QUOTE=momofrsdsjk;731862]

Originally Posted by debbiehub

Debbie, yes her husband contacts Dr Rhodes, he has changed protocols on the pm cycle but not on the am cycle since Nov 17th, Dr Rhodes keep telling her she has to be off all of her meds before the machine will help her, so she weaned off everything except lexapro, she is currently withdrawing from oxy,,,but getting no relief from anything else makes it even more difficult..Dr Rhodes told her it could take 6 months for the machine to work. even maybe a year...not sure she can take a year of this let alone 6 months...everytime we try something new, she seems to get worse, or it spreads...anyway thank you for listening..

barb

Gabby, we live in san diego area, she has had ketamine at ucla, with Dr Prager, works for awhile, but very expensive, has a scs implanted, but stopped working 1 month after it was placed. we have gone thru alot of options, but she continues to get NO relief....Again thank you for listening

Barb

Barb,

So sorry to here all she's been through but so lucky to have you.

I have also done the ketamine route, 3 - 5 day inpatient procedures in NYC, with Dr. Richman and boosters is PA with Dr. Schwartzman. It worked for the burning, sleeping, migraines but that deep joint pain is always there. And when I do flare it's not to often but it still goes all the way down my right leg.

I know everyone thinks I'm crazy but what has helped me I don't want to say with the RSD but with functioning through life with it is excercise. I go to the gym 3 times a week and I can't do everything I would like but I am up to 45 minutes on a elipical machine which 8 months ago I was having a problem walking out of the car. I believe there is some type of connection between excercise and conntroling the central nervous system, I know that's a big statement. We all have heard of Dr. Sherry the Pediatric RSD Specialist in PA, that's exactly what he is doing, that's actually why I started to push myself to at least try. I was tired of being tired, gaining weight because I was just sitting around it was making me more crazy than the RSD. Believe it or not there is a group of doctors trying Dr. Sherry's protocol on adults in the Chicago area. If they ever come out with a study that proves it works on adults, I'll be the first one on line, because I believe there is something to it. It's horribly hard at first and embarrassing because you see all the jocks and women that look terrific.I go to a YMCA and I started because they have a great pool but it's to cold for me. I've asked them to turn up the heater, but they said it's at 82 degress I just could not get in my body just locked. But the excercise definitly helps me. My 16 year old daughter comes with me so it kind of serves two purposes, I get to spend time with my daughter and if you have teenagers we all know they are mostly out or at school or doing something at school, studying or on the computer or texting. I really think both of mine would just melt to the ground if they did not have there devices. But I love them.

Anyway good luck.

[debbiehub]

I also go to the Y about 3 times a week but all I can do is water exercises which is getting more difficult as my muscles weaken. They keep the water temp at 86 degrees which is ok for me. I am so scared I will not be able to swim soon. I do about 12 laps and some jumping around. But it is getting more difficult...feels like the RSD just keeps getting stronger in my foot making it so painful to move around...

Deb

[gabbycakes]

Originally Posted by debbiehub

I also go to the Y about 3 times a week but all I can do is water exercises which is getting more difficult as my muscles weaken. They keep the water temp at 86 degrees which is ok for me. I am so scared I will not be able to swim soon. I do about 12 laps and some jumping around. But it is getting more difficult...feels like the RSD just keeps getting stronger in my foot making it so painful to move around...

Deb

Hi Deb,

Thanks for the info. on the water temperature at your "Y" you did mean 86 degrees? I only ask because the few times I have asked them to increase the temp at the "Y" I go to,they keep it at 82, they tell me they can't raise it higher then 82 degrees. 82 is just to cold for me it just makes my whole body just lock. But I love to swim and be in the water it help's so much. My home is on a lake front piece of property so I do swim in the August when the lake gets warm enough and it's just great. I look at that lake today and it's got at least 8 plus inches of snow on it and it's snowing here unbelievable it's hard to believe I actually swim in there.

Thanks for the info.

Gabbycakes