Sorry to send this again, really need advice......

[Guest guest]

i seem to get a rash when i take too much sinemet. my m.d.s don't seem to agree but i know if i can skip a pill a day it disappears. good luck. ns

[Guest guest]

Dear Friends,

I am really sorry that I am sending this again.....but I do not know if you are receiving it or not. This is really important to me, because Ralph continues to become dizzy and is falling. The doctor seems when we go, tells us "oh you are doing better, has him walk in the hall. He does not see at home. He was admitted to CC in April, because of my concerns, but the tests they did, were all okay.

My husband was diagnosed with Parkinson Disease in 98. We knew something was going on before but did not know what for awhile. My husband uses a cathe four times a day, this started over 2-3 years ago, he has trouble with drooling at times, dizziness (upon raising from sitting), he does not have the shaking as much, but the slowness, hot and cold feet, freezing, balance, speech, trouble swallowing and breathing (he started out with Atria Fibrillation and is on Coumadin, Tambocor, Sinimet, Trazodone, and Macrobid for UTI prevention.

Should I be questioning the diagnoses, should he see another type of doctor? From the time this started has been very progressing. Is it "true" Parkinson or something else? Ralph came down Monday with a rash on his feet and up his legs. Went to the doctors, he sent Ralph to the dermatologist this morning. He said he has leukocytoclastic vascular and does not what caused it, some reaction to one of the medicine's he is on? Very few cases are reported in the USA. We have not been outside the USA! They put him on steroids for 28-days and then he needs to go back to see him. They took him off the antibiotic for UTI prevention, until is blood work comes back, thought that might be the problem. Now they called and have him on Cipro 500mg for 10 days and then 250mg as maintenance after that.

It really worries me that he has been on this different antibiotics maintenance drug for so long. ! and complications are arising now. I just do not want to just let it go. Not sure where I can take him to? Any help would be greatly appreciated! Shirley

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly"

All mail scanned for viruses by Norton Antivirus 2002.

[Guest guest]

Shirley,

I am sorry because I do not know how to help you. What kind of doctor

does Ralph go to? Is it a neurologist who specializes in movement

diseases? I took Requip once but it didn't do anything for me. My

doctor told me I don't have Parkinson's Disease. That is the only

Parkinson's medicine I ever took. I have never had the rash you

mentioned so I can't help you with that either. I know that Deborah

had a rash and might still but I don't know if she could help you

with that since the surgery she had did alot of different things to

her. I don't see how the doctor can say he is doing better when he

obviously isn't. Does the doctor listen to you? If he doesn't that

would be grounds to get another doctor at least in my eyes. I think

maybe you should still think about getting another doctor who can

help you better since this one hasn't satisfied your questions or

needs or if nothing else to get a second opinion. I am sorry I

haven't been able to help you. I hope that someone on here can. If

you have time this afternoon, come to chat. There are people on there

who don't post on here but read what is posted. They might be able to

help you. While surfing if I find something I think might help I will

let you know.

God bless with love and gentle hugs,

Belinda

> Dear Friends,

>

> I am really sorry that I am sending this again.....but I do not

know if you

> are receiving it or not. This is really important to me, because

Ralph

> continues to become dizzy and is falling. The doctor seems when we

go,

> tells us " oh you are doing better, has him walk in the hall. He

does not

> see at home. He was admitted to CC in April, because of my

concerns, but

> the tests they did, were all okay.

>

> My husband was diagnosed with Parkinson Disease in 98. We knew

something

> was going on before but did not know what for awhile. My husband

uses a

> cathe four times a day, this started over 2-3 years ago, he has

trouble with

> drooling at times, dizziness (upon raising from sitting), he does

not have

> the shaking as much, but the slowness, hot and cold feet, freezing,

balance,

> speech, trouble swallowing and breathing (he started out with Atria

> Fibrillation and is on Coumadin, Tambocor, Sinimet, Trazodone, and

Macrobid

> for UTI prevention.

>

> Should I be questioning the diagnoses, should he see another type

of doctor?

> From the time this started has been very progressing. Is it " true "

> Parkinson or something else? Ralph came down Monday with a rash on

his feet

> and up his legs. Went to the doctors, he sent Ralph to the

dermatologist

> this morning. He said he has leukocytoclastic vascular and does

not what

> caused it, some reaction to one of the medicine's he is on? Very

few cases

> are reported in the USA. We have not been outside the USA! They

put him on

> steroids for 28-days and then he needs to go back to see him. They

took him

> off the antibiotic for UTI prevention, until is blood work comes

back,

> thought that might be the problem. Now they called and have him

on Cipro

> 500mg for 10 days and then 250mg as maintenance after that.

>

>

> It really worries me that he has been on this different antibiotics

> maintenance drug for so long. ! and complications are arising now.

I just

> do not want to just let it go. Not sure where I can take him to?

Any help

> would be greatly appreciated! Shirley

>

>

> " I believe that friends are quiet angels who lift us to our feet

when our

> wings have trouble remembering how to fly "

>

> All mail scanned for viruses by Norton Antivirus 2002.

[Guest guest]

Dear Balinda,

Thank you for replying. It is so frustrating and I want to make sure I doing all that I can for Ralph. It is a neurologist for Parkinson that he is seeing. He is not a movement specialist. He was on Requip and was taken off, and still on Sinimet. They think the rash was from the antibiotics he is taking for UTI prevention. They took him off Macrobid and now has him on Cipro 500mg for 10 days, then 250 for maintenance. I am just concerned that overtime (at least a year now he has been on maintenance), that when he really needs the antibiotics they aren't going to work. Thanks Shirley

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly"

OmegaMom43@..., OmegaMom44 (AOL Instant Messenger)

All mail scanned for viruses by Norton Antivirus 2002.

-- Re: Sorry to send this again, really need advice......

Shirley,I am sorry because I do not know how to help you. What kind of doctor does Ralph go to? Is it a neurologist who specializes in movement diseases? I took Requip once but it didn't do anything for me. My doctor told me I don't have Parkinson's Disease. That is the only Parkinson's medicine I ever took. I have never had the rash you mentioned so I can't help you with that either. I know that Deborah had a rash and might still but I don't know if she could help you with that since the surgery she had did alot of different things to her. I don't see how the doctor can say he is doing better when he obviously isn't. Does the doctor listen to you? If he doesn't that would be grounds to get another doctor at least in my eyes. I think maybe you should still think about getting another doctor who can help you better since this one hasn't satisfied your questions or needs or if nothing else to get a second opinion. I am sorry I haven't been able to help you. I hope that someone on here can. If you have time this afternoon, come to chat. There are people on there who don't post on here but read what is posted. They might be able to help you. While surfing if I find something I think might help I will let you know. God bless with love and gentle hugs,Belinda> Dear Friends,> > I am really sorry that I am sending this again.....but I do not know if you> are receiving it or not. This is really important to me, because Ralph> continues to become dizzy and is falling. The doctor seems when we go,> tells us "oh you are doing better, has him walk in the hall. He does not> see at home. He was admitted to CC in April, because of my concerns, but> the tests they did, were all okay. > > My husband was diagnosed with Parkinson Disease in 98. We knew something> was going on before but did not know what for awhile. My husband uses a> cathe four times a day, this started over 2-3 years ago, he has trouble with> drooling at times, dizziness (upon raising from sitting), he does not have> the shaking as much, but the slowness, hot and cold feet, freezing, balance,> speech, trouble swallowing and breathing (he started out with Atria> Fibrillation and is on Coumadin, Tambocor, Sinimet, Trazodone, and Macrobid> for UTI prevention.> > Should I be questioning the diagnoses, should he see another type of doctor?> From the time this started has been very progressing. Is it "true"> Parkinson or something else? Ralph came down Monday with a rash on his feet> and up his legs. Went to the doctors, he sent Ralph to the dermatologist> this morning. He said he has leukocytoclastic vascular and does not what> caused it, some reaction to one of the medicine's he is on? Very few cases> are reported in the USA. We have not been outside the USA! They put him on> steroids for 28-days and then he needs to go back to see him. They took him> off the antibiotic for UTI prevention, until is blood work comes back,> thought that might be the problem. Now they called and have him on Cipro> 500mg for 10 days and then 250mg as maintenance after that. > > > It really worries me that he has been on this different antibiotics> maintenance drug for so long. ! and complications are arising now. I just> do not want to just let it go. Not sure where I can take him to? Any help> would be greatly appreciated! Shirley> > > "I believe that friends are quiet angels who lift us to our feet when our> wings have trouble remembering how to fly"> > All mail scanned for viruses by Norton Antivirus 2002.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Shirley,

don't be sorry.

We caregivers try to find out what is best for our beloved ones. And it hurts to know that finally we will loose the match. Until that day comes we share things we have coped with. Like Belinda said, some information can be retrieved during the chatsessions.

The problem with this disease is that it seems to develop for everybody in a different way. And not all drugs has the same results. The only information I can share with you at this moment, is that Anne is taken Tavegil for the rash. We are not sure what is causing the rash, but when she skips one tablett, the itching starts right away. According to the doctor she can take Tavegil as long as she wishes without developing immunity.

Hope to see you later in the chat.

Timo

Dear Balinda,

Thank you for replying. It is so frustrating and I want to make sure I doing all that I can for Ralph. It is a neurologist for Parkinson that he is seeing. He is not a movement specialist. He was on Requip and was taken off, and still on Sinimet. They think the rash was from the antibiotics he is taking for UTI prevention. They took him off Macrobid and now has him on Cipro 500mg for 10 days, then 250 for maintenance. I am just concerned that overtime (at least a year now he has been on maintenance), that when he really needs the antibiotics they aren't going to work. Thanks Shirley

Shirley,I am sorry because I do not know how to help you. What kind of doctor does Ralph go to? Is it a neurologist who specializes in movement diseases? I took Requip once but it didn't do anything for me. My doctor told me I don't have Parkinson's Disease. That is the only Parkinson's medicine I ever took. I have never had the rash you mentioned so I can't help you with that either. I know that Deborah had a rash and might still but I don't know if she could help you with that since the surgery she had did alot of different things to her. I don't see how the doctor can say he is doing better when he obviously isn't. Does the doctor listen to you? If he doesn't that would be grounds to get another doctor at least in my eyes. I think maybe you should still think about getting another doctor who can help you better since this one hasn't satisfied your questions or needs or if nothing else to get a second opinion. I am sorry I haven't been able to help you. I hope that someone on here can. If you have time this afternoon, come to chat. There are people on there who don't post on here but read what is posted. They might be able to help you. While surfing if I find something I think might help I will let you know. God bless with love and gentle hugs,Belinda> Dear Friends,> > I am really sorry that I am sending this again.....but I do not know if you> are receiving it or not. This is really important to me, because Ralph> continues to become dizzy and is falling. The doctor seems when we go,> tells us "oh you are doing better, has him walk in the hall. He does not> see at home. He was admitted to CC in April, because of my concerns, but> the tests they did, were all okay. > > My husband was diagnosed with Parkinson Disease in 98. We knew something> was going on before but did not know what for awhile. My husband uses a> cathe four times a day, this started over 2-3 years ago, he has trouble with> drooling at times, dizziness (upon raising from sitting), he does not have> the shaking as much, but the slowness, hot and cold feet, freezing, balance,> speech, trouble swallowing and breathing (he started out with Atria> Fibrillation and is on Coumadin, Tambocor, Sinimet, Trazodone, and Macrobid> for UTI prevention.> > Should I be questioning the diagnoses, should he see another type of doctor?> From the time this started has been very progressing. Is it "true"> Parkinson or something else? Ralph came down Monday with a rash on his feet> and up his legs. Went to the doctors, he sent Ralph to the dermatologist> this morning. He said he has leukocytoclastic vascular and does not what> caused it, some reaction to one of the medicine's he is on? Very few cases> are reported in the USA. We have not been outside the USA! They put him on> steroids for 28-days and then he needs to go back to see him. They took him> off the antibiotic for UTI prevention, until is blood work comes back,> thought that might be the problem. Now they called and have him on Cipro> 500mg for 10 days and then 250mg as maintenance after that. > .

[Guest guest]

Shirley,

I am no expert, I am only a caregiving spouse, but one thing we did early on was check my husband's blood pressure when he was feeling dizzy. Later, we also took it at other times and began making a chart/record. Little did we know at that time how valuable that info would be.

Speedy was like your husband in that his blood pressure was fairly steady when it was taken in a doctor's office. He was having those times of being dizzy. One day, we were in a home improvement store. We were going to purchase a plant. When Speedy bent to pick it up (not heavy) he almost passed out. This was at a time when, to look at him, he was still in good shape. When we began taking the blood pressure and recording the time, place, past activities, etc. It was amazing to see the changes. When we took that chart with us to the neurologist, he suggested that my husband enter the evaluation program at Vanderbilt.

Getting a diagnosis does not make a well person. If anything, it only makes the patient and the family aware that (as of today) there is nothing that can be done to cure, but only to try to control the symptoms.

If you would like, I will be happy to send you a copy of my husband's story (privately.) Most folks on this line have seen it before and would be bored. It sounds much like your husband.

[Guest guest]

Shirley,

Your husband is getting " normal " medicines for MSA so I don't know that

you need a new doctor. Is he doing any physical or speech therapy?

Repeated infections can be a sign of inadequate liquid intake or even a

poor diet due to swallowing problems. Ask you doctor about therapy

rather than miracle drugs as there are no miracle drugs for MSA.

You can always ask your doctor for a second opinion. Doctor Reich is

now at the U of MD hospital in Baltimore (I believe). If you want a

second opinion I can ask the DC Metro group about the doctors they use

as many are in land. Several use Dr. Reich.

Take care, Bill