Re: Info on hot burning legs

[Guest guest]

Ann,

Did any of the Parkinson's meds help at all? Which ones did he try? Has

he been tested for all types of infection (UTI, pneumonia, blood and yeast)

- that is the most common cause of sudden worsening of symptoms of MSA.

The dizziness is caused by low BP and the florinef is being used to fight

that - is he taking extra salt to help the florinef? Many people here take

as much as 4000 - 6000 mg of sodium per day to help. I note that he is already

taking extra potassium - is his BP going up drastically when he lies down?

If so you can help the high BP by raising the head of the bed 4-6 inches.

Speech (swallowing) and physical therapy can help his movement and swallowing

which can cause the loss of appetite. It is necessary for him to exercise

daily to get the most benefit. The exercise does not have to be aerobic,

range of motion exercises are important however. The speech exercises should

focus on volumn as well as word formation.

It is good to find a doctor who will work with you to find the best mix of

medicines to help out. Often medicines which are used to treat other disorders

such as PD, MS, etc. can also be used to treat MSA symptoms. You must learn

to work with the doctor and keep records of symptoms, times, medicines, etc.

Hang in there and tell us more. Many of us have had trouble adjusting meds,

even with our doctors woking well with us. It is a lousy disorder to have.

Take care, Bill Werre

-----------------------------------------------

Algernon Handyside wrote:

Hi there can anyone help us out there

with their experience of MSA disease?

My husband has only recently been given confirmation

that he has MSA and not Parkinson's Disease as he was told late in 2000.

He constantly suffers from severe headaches

(Panadeine Forte & Panamax) which nothing he takes relieves the pain.

The dizziness he finds

unbearable. His other problem is the constant

"hot burning" in his legs which is aggreviated more with the summer

weather. Presently he is taking

Madopar, Zoloft, Florinef, Alepam, Bio

Mangnesium, Vit E, Pluravit and just recently Slow K (salt tablets).

His deterioration has been very rapid

over the past 18 months and he will soon require more medical equipment

to help him around the home.

After a visit to hospital earlier this

year he was taken off the drug called "Minipress" which was causing

him to have several blackouts, resulting

in his body becoming rigid. The ataxia

is making it more and more difficult for him to walk around safely. Visits

away from home has ceased - he

generally suffers from phobia especially

in crowded places. Depression sometimes is managed very well with Zoloft

- but other times its just not

strong enough. Loss of appetite is a constant

worry and menus always have to be changed - eating is becoming much slower.

His body is already

showing signs of wasting away which is

typical of this disease dispite his attempts at exercising. He suffers from

very low blood pressure which

his present medication isn't helping him

to cope with this condition.

We have recently changed our local GP,

neurologist and urologist and have found that they are all very supportive,

understanding caring individuals

who were shocked to hear our story about

the past treatment my husband had received. If anyone else is experiencing

the same problem - please

don't hestitate in seeking a second or third

opinion on your loved ones condition. Our past doctors knew nothing about

my husbands condition nor

were they really interested in listening

to our concerns.

Ann

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Ann,

Did any of the Parkinson's meds help at all? Which ones did he try? Has

he been tested for all types of infection (UTI, pneumonia, blood and yeast)

- that is the most common cause of sudden worsening of symptoms of MSA.

The dizziness is caused by low BP and the florinef is being used to fight

that - is he taking extra salt to help the florinef? Many people here take

as much as 4000 - 6000 mg of sodium per day to help. I note that he is already

taking extra potassium - is his BP going up drastically when he lies down?

If so you can help the high BP by raising the head of the bed 4-6 inches.

Speech (swallowing) and physical therapy can help his movement and swallowing

which can cause the loss of appetite. It is necessary for him to exercise

daily to get the most benefit. The exercise does not have to be aerobic,

range of motion exercises are important however. The speech exercises should

focus on volumn as well as word formation.

It is good to find a doctor who will work with you to find the best mix of

medicines to help out. Often medicines which are used to treat other disorders

such as PD, MS, etc. can also be used to treat MSA symptoms. You must learn

to work with the doctor and keep records of symptoms, times, medicines, etc.

Hang in there and tell us more. Many of us have had trouble adjusting meds,

even with our doctors woking well with us. It is a lousy disorder to have.

Take care, Bill Werre

-----------------------------------------------

Algernon Handyside wrote:

Hi there can anyone help us out there

with their experience of MSA disease?

My husband has only recently been given confirmation

that he has MSA and not Parkinson's Disease as he was told late in 2000.

He constantly suffers from severe headaches

(Panadeine Forte & Panamax) which nothing he takes relieves the pain.

The dizziness he finds

unbearable. His other problem is the constant

"hot burning" in his legs which is aggreviated more with the summer

weather. Presently he is taking

Madopar, Zoloft, Florinef, Alepam, Bio

Mangnesium, Vit E, Pluravit and just recently Slow K (salt tablets).

His deterioration has been very rapid

over the past 18 months and he will soon require more medical equipment

to help him around the home.

After a visit to hospital earlier this

year he was taken off the drug called "Minipress" which was causing

him to have several blackouts, resulting

in his body becoming rigid. The ataxia

is making it more and more difficult for him to walk around safely. Visits

away from home has ceased - he

generally suffers from phobia especially

in crowded places. Depression sometimes is managed very well with Zoloft

- but other times its just not

strong enough. Loss of appetite is a constant

worry and menus always have to be changed - eating is becoming much slower.

His body is already

showing signs of wasting away which is

typical of this disease dispite his attempts at exercising. He suffers from

very low blood pressure which

his present medication isn't helping him

to cope with this condition.

We have recently changed our local GP,

neurologist and urologist and have found that they are all very supportive,

understanding caring individuals

who were shocked to hear our story about

the past treatment my husband had received. If anyone else is experiencing

the same problem - please

don't hestitate in seeking a second or third

opinion on your loved ones condition. Our past doctors knew nothing about

my husbands condition nor

were they really interested in listening

to our concerns.

Ann

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Hi ,

Thank you for your message - we totally agreed MSA is a lousy disease, we thought that PD was bad enough.

Yes he is now taking extra salt to help with the florinef - have tried to raise his head but he finds this uncomfortable, however his balance is much better when he arises after a night of sleeping with his head raised. No, noone to date has treated him for any possible infections. No his BP doesn't go up drastically when he lies down, it's normal.

Still trying to get physio's back to help him out with exercises etc - this also includes his speech therapists, who told him on her first visit that Al needed just to talk more, that's when everyone thought he only had PD. We are hopeful that our new neuro can do something about his medication - he's worn out feeling like "death" everyday!

Thanking you,

Ann

Re: Info on hot burning legs

Ann,Did any of the Parkinson's meds help at all? Which ones did he try? Has he been tested for all types of infection (UTI, pneumonia, blood and yeast) - that is the most common cause of sudden worsening of symptoms of MSA. The dizziness is caused by low BP and the florinef is being used to fight that - is he taking extra salt to help the florinef? Many people here take as much as 4000 - 6000 mg of sodium per day to help. I note that he is already taking extra potassium - is his BP going up drastically when he lies down? If so you can help the high BP by raising the head of the bed 4-6 inches.Speech (swallowing) and physical therapy can help his movement and swallowing which can cause the loss of appetite. It is necessary for him to exercise daily to get the most benefit. The exercise does not have to be aerobic, range of motion exercises are important however. The speech exercises should focus on volumn as well as word formation.It is good to find a doctor who will work with you to find the best mix of medicines to help out. Often medicines which are used to treat other disorders such as PD, MS, etc. can also be used to treat MSA symptoms. You must learn to work with the doctor and keep records of symptoms, times, medicines, etc.Hang in there and tell us more. Many of us have had trouble adjusting meds, even with our doctors woking well with us. It is a lousy disorder to have.Take care, Bill Werre-----------------------------------------------Algernon Handyside wrote:

Hi there can anyone help us out there with their experience of MSA disease?

My husband has only recently been given confirmation that he has MSA and not Parkinson's Disease as he was told late in 2000.

He constantly suffers from severe headaches (Panadeine Forte & Panamax) which nothing he takes relieves the pain. The dizziness he finds

unbearable. His other problem is the constant "hot burning" in his legs which is aggreviated more with the summer weather. Presently he is taking

Madopar, Zoloft, Florinef, Alepam, Bio Mangnesium, Vit E, Pluravit and just recently Slow K (salt tablets).

His deterioration has been very rapid over the past 18 months and he will soon require more medical equipment to help him around the home.

After a visit to hospital earlier this year he was taken off the drug called "Minipress" which was causing him to have several blackouts, resulting

in his body becoming rigid. The ataxia is making it more and more difficult for him to walk around safely. Visits away from home has ceased - he

generally suffers from phobia especially in crowded places. Depression sometimes is managed very well with Zoloft - but other times its just not

strong enough. Loss of appetite is a constant worry and menus always have to be changed - eating is becoming much slower. His body is already

showing signs of wasting away which is typical of this disease dispite his attempts at exercising. He suffers from very low blood pressure which

his present medication isn't helping him to cope with this condition.

We have recently changed our local GP, neurologist and urologist and have found that they are all very supportive, understanding caring individuals

who were shocked to hear our story about the past treatment my husband had received. If anyone else is experiencing the same problem - please

don't hestitate in seeking a second or third opinion on your loved ones condition. Our past doctors knew nothing about my husbands condition nor

were they really interested in listening to our concerns.

AnnIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi ,

Thank you for your message - we totally agreed MSA is a lousy disease, we thought that PD was bad enough.

Yes he is now taking extra salt to help with the florinef - have tried to raise his head but he finds this uncomfortable, however his balance is much better when he arises after a night of sleeping with his head raised. No, noone to date has treated him for any possible infections. No his BP doesn't go up drastically when he lies down, it's normal.

Still trying to get physio's back to help him out with exercises etc - this also includes his speech therapists, who told him on her first visit that Al needed just to talk more, that's when everyone thought he only had PD. We are hopeful that our new neuro can do something about his medication - he's worn out feeling like "death" everyday!

Thanking you,

Ann

Re: Info on hot burning legs

Ann,Did any of the Parkinson's meds help at all? Which ones did he try? Has he been tested for all types of infection (UTI, pneumonia, blood and yeast) - that is the most common cause of sudden worsening of symptoms of MSA. The dizziness is caused by low BP and the florinef is being used to fight that - is he taking extra salt to help the florinef? Many people here take as much as 4000 - 6000 mg of sodium per day to help. I note that he is already taking extra potassium - is his BP going up drastically when he lies down? If so you can help the high BP by raising the head of the bed 4-6 inches.Speech (swallowing) and physical therapy can help his movement and swallowing which can cause the loss of appetite. It is necessary for him to exercise daily to get the most benefit. The exercise does not have to be aerobic, range of motion exercises are important however. The speech exercises should focus on volumn as well as word formation.It is good to find a doctor who will work with you to find the best mix of medicines to help out. Often medicines which are used to treat other disorders such as PD, MS, etc. can also be used to treat MSA symptoms. You must learn to work with the doctor and keep records of symptoms, times, medicines, etc.Hang in there and tell us more. Many of us have had trouble adjusting meds, even with our doctors woking well with us. It is a lousy disorder to have.Take care, Bill Werre-----------------------------------------------Algernon Handyside wrote:

Hi there can anyone help us out there with their experience of MSA disease?

My husband has only recently been given confirmation that he has MSA and not Parkinson's Disease as he was told late in 2000.

He constantly suffers from severe headaches (Panadeine Forte & Panamax) which nothing he takes relieves the pain. The dizziness he finds

unbearable. His other problem is the constant "hot burning" in his legs which is aggreviated more with the summer weather. Presently he is taking

Madopar, Zoloft, Florinef, Alepam, Bio Mangnesium, Vit E, Pluravit and just recently Slow K (salt tablets).

His deterioration has been very rapid over the past 18 months and he will soon require more medical equipment to help him around the home.

After a visit to hospital earlier this year he was taken off the drug called "Minipress" which was causing him to have several blackouts, resulting

in his body becoming rigid. The ataxia is making it more and more difficult for him to walk around safely. Visits away from home has ceased - he

generally suffers from phobia especially in crowded places. Depression sometimes is managed very well with Zoloft - but other times its just not

strong enough. Loss of appetite is a constant worry and menus always have to be changed - eating is becoming much slower. His body is already

showing signs of wasting away which is typical of this disease dispite his attempts at exercising. He suffers from very low blood pressure which

his present medication isn't helping him to cope with this condition.

We have recently changed our local GP, neurologist and urologist and have found that they are all very supportive, understanding caring individuals

who were shocked to hear our story about the past treatment my husband had received. If anyone else is experiencing the same problem - please

don't hestitate in seeking a second or third opinion on your loved ones condition. Our past doctors knew nothing about my husbands condition nor

were they really interested in listening to our concerns.

AnnIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe