Re: Tests to help MSA diagnosis - Bill Pilgrim

[Guest guest]

Thank you Pam,

I am afraid that some of the tests you mentioned would not be in the range

of knowledge of most of the GPs I have been to. I will copy your reply and

when I can next get to see a Specialist Physician I will present them and

see what response is forth-coming. We seem to have a serious problem in

this country. The number of GPs is strictly limited by the Government and I

presume the AMA. They will not allow more than the present number of

Doctors who can be supplied with a Medicare Number with which to bill

Medicare. While we have a deficit in Practitioners, no more Doctors can

practice, because unless they have their Medicare Number, they will not have

people visiting. Unfortunately, there are many of the existing GPs who only

practice part time. Some are becoming too old to be of real value for any

type of diagnostic consultations, while some are involved in other income

earning occupations, and could not see people on more than a couple of days

a week. The same goes for female Doctors who have families and only attend

clinics occasionally. Many or probably most Doctors make appointments for a

week or three or even more in advance. If you wish to make an appointment

in an emergency, they will not turn you away (so far) but you take your

chances on who you get to see, or how long it takes. The Public Hospitals

are no better. Most of the Doctors are probably good for emergency care,

but seem to take the easy way out for diagnostic work. I have presented

several times for my breathing problems and have been told repeatedly " Panic

Attack " . Actually I hope they are correct. Unless it is a major trauma,

you can be sure of a four or five hour wait for attention. We used to look

forward to interest, and care from our GPs, they now seem like any other

trade, where the majority of them are out for a quick buck, and to hell with

the real problem.

Well I am sorry if I have anoyed you with my ramblings, but

after many years of battling against the flow with anything but a very

common complaint, one tends to become a little bit paranoid about these

things.

Best wishes and Regards from Bill Pilgrim

Re: a bit confused

> >

> >

> > If they were testing for possible MSA, Shy Drager, etc., what type of

test

> > would they do? Is a EEG, MRI, better or is a PET, what is the

difference?

> > Thanks! Shirley cg to Ralph

> >

> >

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

our

> > wings have trouble remembering how to fly "

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Hi Bill,

I would think that most of these tests could only be ordered by a

neurologist, preferably a movement disorder specialist. Are you able to get

a referral from your GP to see a neurologist?

Regards,

Pam

Re: a bit confused

> > >

> > >

> > > If they were testing for possible MSA, Shy Drager, etc., what type of

> test

> > > would they do? Is a EEG, MRI, better or is a PET, what is the

> difference?

> > > Thanks! Shirley cg to Ralph

> > >

> > >

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

> our

> > > wings have trouble remembering how to fly "

> > >

> > >

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

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hello Pam.

Thanks once again for the reply. I will give it a try and

see what I can do. Once a person is diagnosed as having CFS or FMS they ae

considered as not being the whole dollar, so it will not hurt any more to

try. It is surprising to me that the symptoms I read about in your site are

so similar to my own and possibly many other sufferers diagnosed as CFS FMS.

Do your group of people have a lot of pain? I am really confused about the

whole thing. Your people talk about PAF and MSA then about Parkinsons and

some sort of scale. Is Parkinsons a form of MSA? Are there different types

of MSA, or is MSA a group of problems, with Parkinsons being one of them?

I have read some of your emails and it would seem that the

people with MSA become unable to help them selves after a few years. I've

had my problems for quite a few years and am still fairly mobile. Unless I

told them, nobody I meet casually would know I have any problems. Most of

my associates keep saying how well I look, even though I am very overweight

at 110kg, mainly due to my breathlesness, which comes and goes (but never

compleatly).

Even though I am fairly critical of the Medical Profession,

my GP is at least able to be talked to and I will take some of the

information I have gleaned and have a talk to him in two weeks when I see

him again, for all the injections I am getting.

Regards Bill P.

Re: a bit confused

> > > >

> > > >

> > > > If they were testing for possible MSA, Shy Drager, etc., what type

of

> > test

> > > > would they do? Is a EEG, MRI, better or is a PET, what is the

> > difference?

> > > > Thanks! Shirley cg to Ralph

> > > >

> > > >

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

when

> > our

> > > > wings have trouble remembering how to fly "

> > > >

> > > >

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

> > > > unsubscribe by sending a blank email to

> > > >

> > > > shydrager-unsubscribe

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Greeting Bill!

And yes, Pam, I will chime in .. off key, as usual!

> There are some MSA patients who report pain yes...

> some report muscle cramping pain, others have headache

> and neck pain, others have neuropathy pain.

I have problems with the cramping and neuropathy. Most patients with MSA do

not have problems with this. As I understand it, the peripheral neuropathy

is most commonly associated with MSA-C (Sporadic OPCA.. or degeneration of

the cerebellum .. but not related to any family history).

The cramping pain is a common problem among patients struggling with MSA.

The only 'fix' for these is to manage symptoms. Neurontin helps manage the

tingling / neuropathic pain. Zanaflex helps me manage the muscle cramping.

But it is important to remember that pain is not a defining symptom of MSA.

So, if you have pain, it does not mean you have MSA. It also does not rule

it out.

At least that is how I understand it.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greeting Bill!

And yes, Pam, I will chime in .. off key, as usual!

> There are some MSA patients who report pain yes...

> some report muscle cramping pain, others have headache

> and neck pain, others have neuropathy pain.

I have problems with the cramping and neuropathy. Most patients with MSA do

not have problems with this. As I understand it, the peripheral neuropathy

is most commonly associated with MSA-C (Sporadic OPCA.. or degeneration of

the cerebellum .. but not related to any family history).

The cramping pain is a common problem among patients struggling with MSA.

The only 'fix' for these is to manage symptoms. Neurontin helps manage the

tingling / neuropathic pain. Zanaflex helps me manage the muscle cramping.

But it is important to remember that pain is not a defining symptom of MSA.

So, if you have pain, it does not mean you have MSA. It also does not rule

it out.

At least that is how I understand it.

Regards,

=jbf=

B. Fisher

[Guest guest]

Bill,

I am sorry that you are having so many problems with doctors. I can

relate to what you are going through as I am sure some others can

also. I am 44 yr old mother of 4 who was told by an internist that I

had fibromyalgia. I knew that I had more symptoms that the others who

I had spoke with in that support group. I never gave up. I went to 2

or 3 neurologist who also told me that I was just pschotic or I was

being physcially abused by my husband. That was absurb and sent my

husband and parents through the roof! I finally got an appointment

with a doctor over the MS society in Atlanta, Georgia.The reason I

thought I might have MS was because I had it in my family. I found

out I didn't have MS but he said he knew what was wrong with me was

neurological. I finally found a neurologist who could help me and he

has watched me for the last few months. I have been diagnosed with

corticobasal degeneration and not MSA. I only stay in this support

group because I love all the people here. So whatever you do, do not

give up. You know your body better than anyone else. You will find

help and if you can find a neurologist that specializes in motor

movements that would be your best help.

God Bless,

Belinda

> Thank you Pam,

> I am afraid that some of the tests you mentioned would not be in

the range

> of knowledge of most of the GPs I have been to. I will copy your

reply and

> when I can next get to see a Specialist Physician I will present

them and

> see what response is forth-coming. We seem to have a serious

problem in

> this country. The number of GPs is strictly limited by the

Government and I

> presume the AMA. They will not allow more than the present number

of

> Doctors who can be supplied with a Medicare Number with which to

bill

> Medicare. While we have a deficit in Practitioners, no more

Doctors can

> practice, because unless they have their Medicare Number, they will

not have

> people visiting. Unfortunately, there are many of the existing GPs

who only

> practice part time. Some are becoming too old to be of real value

for any

> type of diagnostic consultations, while some are involved in other

income

> earning occupations, and could not see people on more than a couple

of days

> a week. The same goes for female Doctors who have families and

only attend

> clinics occasionally. Many or probably most Doctors make

appointments for a

> week or three or even more in advance. If you wish to make an

appointment

> in an emergency, they will not turn you away (so far) but you take

your

> chances on who you get to see, or how long it takes. The Public

Hospitals

> are no better. Most of the Doctors are probably good for emergency

care,

> but seem to take the easy way out for diagnostic work. I have

presented

> several times for my breathing problems and have been told

repeatedly " Panic

> Attack " . Actually I hope they are correct. Unless it is a major

trauma,

> you can be sure of a four or five hour wait for attention. We used

to look

> forward to interest, and care from our GPs, they now seem like any

other

> trade, where the majority of them are out for a quick buck, and to

hell with

> the real problem.

> Well I am sorry if I have anoyed you with my

ramblings, but

> after many years of battling against the flow with anything but a

very

> common complaint, one tends to become a little bit paranoid about

these

> things.

> Best wishes and Regards from Bill Pilgrim

>

>

>

>

> Re: a bit confused

> > >

> > >

> > > If they were testing for possible MSA, Shy Drager, etc., what

type of

> test

> > > would they do? Is a EEG, MRI, better or is a PET, what is the

> difference?

> > > Thanks! Shirley cg to Ralph

> > >

> > >

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

feet when

> our

> > > wings have trouble remembering how to fly "

> > >

> > >

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

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >

> > >