Re: Heavy Legs & other symptoms

[Guest guest]

Keeping in mind the " Neapolitan Ice Cream " analogy

Carol & Rob recently shared which suggests that all

MSA patients will have some degree of the 3 MSA

variants at some point, is it typical that only

the SND MSA patients would initially have the muscle

rigity that is often mentioned in discussions about

Parkinsons symptoms? I have not heard Larry mention

anything about this or about feeling heavy, or

about slowed movement. I am also not aware that he

has any of the eye movement problems that are frequently

referred to. He mentioned that the neurologist commented

that the speed of his repetitive pinky to thumb tapping

was slow, but I assume that has more to do with her

assessment of the relative status of the neurological

deficit.

Mainly, besides the balance problem and the HO, he

talks about feeling weak in his knees, about

being extremely fatigued at times, and about having

head aches, but he never mentions having muscle pain,

muscle cramps, rigidity, etc. In fact, now that I

think about it he has never mentioned having the " burning

neck ache " that is mentioned frequently in most materials

I've read about SDS.

It is a beautiful sunny day in Indiana. Hope you

are all having the same good fortune today with

your local weather!

Jerry Cash

Re: Heavy Legs

Thanks for the discussion here about this. It's amazing how often some of

my symptoms appear before the discussion appears here. This email list does

a good job of helping me sort out my symptoms.

I have periodic episodes of feeling very heavy. Un/fortunately it's not

constant. At this point my neurologist doesn't want to use Sinemet.

Instead he prescribed Zanaflex for spasticity. We will see. If it doesn't

work I *will* insist we try Sinemet, since this impacts my ability to work.

Typing and walking is becoming more difficult. I can certainly overcome

this with technology and more frequent exercise. But if medication can help

....

Thanks, everyone for the time you took to share your experiences. It helps.

Regards,

=jbf=

B. Fisher

[Guest guest]

Jerry,

It's certainly possible to have MSA without the SND type symptoms.

Rob has only minor SND symptoms, with a minor tremor and some

cramping in his left foot and leg, and he was diagnosed 3 years ago.

He does have some vision problems, but not " cogwheeling " . He has

become nearsighted in one eye and farsighted in the other, which is

attributed to the autonomic failure to focus both eyes together. The

problem has been corrected by two pairs of eyeglasses - one for

reading and one for distance. He, like many others, was advised

against bifocals due to the difficulty in making the near/far focus

transition.

I guess it depends on how much SND you get in the first " scoop " of

MSA.

Carol & Rob

> Keeping in mind the " Neapolitan Ice Cream " analogy

> Carol & Rob recently shared which suggests that all

> MSA patients will have some degree of the 3 MSA

> variants at some point, is it typical that only

> the SND MSA patients would initially have the muscle

> rigity that is often mentioned in discussions about

> Parkinsons symptoms? I have not heard Larry mention

> anything about this or about feeling heavy, or

> about slowed movement. I am also not aware that he

> has any of the eye movement problems that are frequently

> referred to. He mentioned that the neurologist commented

> that the speed of his repetitive pinky to thumb tapping

> was slow, but I assume that has more to do with her

> assessment of the relative status of the neurological

> deficit.

>

> Mainly, besides the balance problem and the HO, he

> talks about feeling weak in his knees, about

> being extremely fatigued at times, and about having

> head aches, but he never mentions having muscle pain,

> muscle cramps, rigidity, etc. In fact, now that I

> think about it he has never mentioned having the " burning

> neck ache " that is mentioned frequently in most materials

> I've read about SDS.

>

> It is a beautiful sunny day in Indiana. Hope you

> are all having the same good fortune today with

> your local weather!

>

> Jerry Cash

>

>

>

>

>

> Re: Heavy Legs

>

>

> Thanks for the discussion here about this. It's amazing how often

some of

> my symptoms appear before the discussion appears here. This email

list does

> a good job of helping me sort out my symptoms.

>

> I have periodic episodes of feeling very heavy. Un/fortunately

it's not

> constant. At this point my neurologist doesn't want to use Sinemet.

> Instead he prescribed Zanaflex for spasticity. We will see. If it

doesn't

> work I *will* insist we try Sinemet, since this impacts my ability

to work.

> Typing and walking is becoming more difficult. I can certainly

overcome

> this with technology and more frequent exercise. But if medication

can help

> ...

>

> Thanks, everyone for the time you took to share your experiences.

It helps.

>

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

>

[Guest guest]

Jerry,

Many patients here were first diagnosed as PD including Charlotte. Charlotte

was diagnosed as PD because of the microwriting and rigidity in 1990. It was at

least 1994 before they suggested OPCA and 1995 before they decided on MSA. SND

was never mentioned.

Take care, Bill and Charlotte

===================================

Jerry Cash wrote:

> Keeping in mind the " Neapolitan Ice Cream " analogy

> Carol & Rob recently shared which suggests that all

> MSA patients will have some degree of the 3 MSA

> variants at some point, is it typical that only

> the SND MSA patients would initially have the muscle

> rigity that is often mentioned in discussions about

> Parkinsons symptoms? I have not heard Larry mention

> anything about this or about feeling heavy, or

> about slowed movement. I am also not aware that he

> has any of the eye movement problems that are frequently

> referred to. He mentioned that the neurologist commented

> that the speed of his repetitive pinky to thumb tapping

> was slow, but I assume that has more to do with her

> assessment of the relative status of the neurological

> deficit.

>

> Mainly, besides the balance problem and the HO, he

> talks about feeling weak in his knees, about

> being extremely fatigued at times, and about having

> head aches, but he never mentions having muscle pain,

> muscle cramps, rigidity, etc. In fact, now that I

> think about it he has never mentioned having the " burning

> neck ache " that is mentioned frequently in most materials

> I've read about SDS.

>

> It is a beautiful sunny day in Indiana. Hope you

> are all having the same good fortune today with

> your local weather!

>

> Jerry Cash

>

> Re: Heavy Legs

>

> Thanks for the discussion here about this. It's amazing how often some of

> my symptoms appear before the discussion appears here. This email list does

> a good job of helping me sort out my symptoms.

>

> I have periodic episodes of feeling very heavy. Un/fortunately it's not

> constant. At this point my neurologist doesn't want to use Sinemet.

> Instead he prescribed Zanaflex for spasticity. We will see. If it doesn't

> work I *will* insist we try Sinemet, since this impacts my ability to work.

> Typing and walking is becoming more difficult. I can certainly overcome

> this with technology and more frequent exercise. But if medication can help

> ...

>

> Thanks, everyone for the time you took to share your experiences. It helps.

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

[Guest guest]

Dear Friends,

At some point, one of you will probably have

to say " because and that's all you need to

know, now shut up and quit asking " , but until

you do, I'm back on the diagnosis thing with

OPCA vs MSA.

Are there a basic set of criteria for

which the diagnosis absolutely moves from OPCA

to MSA? I realize that it has been said

over and over again in previous postings that there

is no absolute diagnosis without autopsy, but I

assume there are some fairly distinct criteria

or else it would suffice to diagnose most

everyone as OPCA? I ask this because I really

don't see any symptom attributed MSA that is

exclusive to MSA as opposed to the other

movement disorders. For instance, PD patients

can have OH, or ataxia, or visual disturbances,

or urinary problems, etc. right?

Although several of those post responses indicate

their diagnoses have moved from OPCA or PD to MSA,

I get the impresssion that some of you who respond

are still diagnosed as OPCA.

Jerry

Re: Heavy Legs

>

> Thanks for the discussion here about this. It's amazing how often some of

> my symptoms appear before the discussion appears here. This email list

does

> a good job of helping me sort out my symptoms.

>

> I have periodic episodes of feeling very heavy. Un/fortunately it's not

> constant. At this point my neurologist doesn't want to use Sinemet.

> Instead he prescribed Zanaflex for spasticity. We will see. If it

doesn't

> work I *will* insist we try Sinemet, since this impacts my ability to

work.

> Typing and walking is becoming more difficult. I can certainly overcome

> this with technology and more frequent exercise. But if medication can

help

> ...

>

> Thanks, everyone for the time you took to share your experiences. It

helps.

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

[Guest guest]

Jerry,

Generally the major symptoms are:

SDS OH and autonomic failure

OPCA Balance problems

SND rigidity and possibly tremor

Combinations of two or more is MSA. Often as in Charlotte's case her worst

symptom is the balance, but she has the rigidity of SND and the OH of SDS so

they call it MSA. In her case it started as rigidity and microwriting, but they

are not the worst symptoms at this time, so it is not considered SND.

Try reading these sites (all on Charmayne's links page):

http://www.neuro.nwu.edu/meded/MOVEMENT/msa.html

http://www.parkinson.org/atrophy.htm

http://neurologychannel.com/msa/

http://www.wemove.org/msa.html

All of them describe the various types of MSA and note the differences.

Take care, Bill and Charlotte

=====================================

Jerry Cash wrote:

> Dear Friends,

>

> At some point, one of you will probably have

> to say " because and that's all you need to

> know, now shut up and quit asking " , but until

> you do, I'm back on the diagnosis thing with

> OPCA vs MSA.

>

> Are there a basic set of criteria for

> which the diagnosis absolutely moves from OPCA

> to MSA? I realize that it has been said

> over and over again in previous postings that there

> is no absolute diagnosis without autopsy, but I

> assume there are some fairly distinct criteria

> or else it would suffice to diagnose most

> everyone as OPCA? I ask this because I really

> don't see any symptom attributed MSA that is

> exclusive to MSA as opposed to the other

> movement disorders. For instance, PD patients

> can have OH, or ataxia, or visual disturbances,

> or urinary problems, etc. right?

>

> Although several of those post responses indicate

> their diagnoses have moved from OPCA or PD to MSA,

> I get the impresssion that some of you who respond

> are still diagnosed as OPCA.

>

> Jerry

>

> Re: Heavy Legs

> >

> > Thanks for the discussion here about this. It's amazing how often some of

> > my symptoms appear before the discussion appears here. This email list

> does

> > a good job of helping me sort out my symptoms.

> >

> > I have periodic episodes of feeling very heavy. Un/fortunately it's not

> > constant. At this point my neurologist doesn't want to use Sinemet.

> > Instead he prescribed Zanaflex for spasticity. We will see. If it

> doesn't

> > work I *will* insist we try Sinemet, since this impacts my ability to

> work.

> > Typing and walking is becoming more difficult. I can certainly overcome

> > this with technology and more frequent exercise. But if medication can

> help

> > ...

> >

> > Thanks, everyone for the time you took to share your experiences. It

> helps.

> >

> > Regards,

> > =jbf=

> >

> > B. Fisher

> >

> >

[Guest guest]

Goodness...my poor father has every symptom you

mention, Bill. Does this mean he is farther into the

disease or just unfortunate?

in OK

--- Werre wrote:

> Jerry,

>

> Generally the major symptoms are:

>

> SDS OH and autonomic failure

> OPCA Balance problems

> SND rigidity and possibly tremor

>

> Combinations of two or more is MSA. Often as in

> Charlotte's case her worst

> symptom is the balance, but she has the rigidity of

> SND and the OH of SDS so

> they call it MSA. In her case it started as

> rigidity and microwriting, but they

> are not the worst symptoms at this time, so it is

> not considered SND.

>

> Try reading these sites (all on Charmayne's links

> page):

>

> http://www.neuro.nwu.edu/meded/MOVEMENT/msa.html

>

> http://www.parkinson.org/atrophy.htm

>

> http://neurologychannel.com/msa/

>

> http://www.wemove.org/msa.html

>

> All of them describe the various types of MSA and

> note the differences.

>

> Take care, Bill and Charlotte

>

> =====================================

>

> Jerry Cash wrote:

>

> > Dear Friends,

> >

> > At some point, one of you will probably have

> > to say " because and that's all you need to

> > know, now shut up and quit asking " , but until

> > you do, I'm back on the diagnosis thing with

> > OPCA vs MSA.

> >

> > Are there a basic set of criteria for

> > which the diagnosis absolutely moves from OPCA

> > to MSA? I realize that it has been said

> > over and over again in previous postings that

> there

> > is no absolute diagnosis without autopsy, but I

> > assume there are some fairly distinct criteria

> > or else it would suffice to diagnose most

> > everyone as OPCA? I ask this because I really

> > don't see any symptom attributed MSA that is

> > exclusive to MSA as opposed to the other

> > movement disorders. For instance, PD patients

> > can have OH, or ataxia, or visual disturbances,

> > or urinary problems, etc. right?

> >

> > Although several of those post responses indicate

> > their diagnoses have moved from OPCA or PD to MSA,

> > I get the impresssion that some of you who respond

> > are still diagnosed as OPCA.

> >

> > Jerry

> >

> > Re: Heavy Legs

> > >

> > > Thanks for the discussion here about this. It's

> amazing how often some of

> > > my symptoms appear before the discussion appears

> here. This email list

> > does

> > > a good job of helping me sort out my symptoms.

> > >

> > > I have periodic episodes of feeling very heavy.

> Un/fortunately it's not

> > > constant. At this point my neurologist doesn't

> want to use Sinemet.

> > > Instead he prescribed Zanaflex for spasticity.

> We will see. If it

> > doesn't

> > > work I *will* insist we try Sinemet, since this

> impacts my ability to

> > work.

> > > Typing and walking is becoming more difficult.

> I can certainly overcome

> > > this with technology and more frequent exercise.

> But if medication can

> > help

> > > ...

> > >

> > > Thanks, everyone for the time you took to share

> your experiences. It

> > helps.

> > >

> > > Regards,

> > > =jbf=

> > >

> > > B. Fisher

> > >

> > >

[Guest guest]

,

That means he most likely has MSA.

Take care, Bill and Charlotte

======================

M Bruner wrote:

> Goodness...my poor father has every symptom you

> mention, Bill. Does this mean he is farther into the

> disease or just unfortunate?

>

> in OK

[Guest guest]

(earlier message said...)

> >Generally the major symptoms are:

> >

> >SDS OH and autonomic failure

> >OPCA Balance problems

> >SND rigidity and possibly tremor

> >

> >Combinations of two or more is MSA.

My mom's problems started with OH. It was mild for several years and she

couldn't get any doctor to recognize the problem (they always checked her

pressure SITTING on the exam table. DUH!) Also several years before we

knew something was seriously wrong she had the violent dreams. (Once gave my

dad a black eye in her sleep... we laughed a lot about it at the time. If

we had known what it meant...) She had always been in excellent health, but

suddenly a lot of little things were going wrong but they seemed unrelated.

Who would identify incontincence and poor balance as related symptoms? It

was disconcerting that suddenly she was seeing a half dozen specialists for

various problems and none of the 'treatments' were having any effect.

Suddenly it all tumbled for us that she was experiencing problems with of

all her autonomic systems and we got very serious about searching for

answers. My mom, my dad, my sister, and I all sat down to make a list of

her various health problems -- large, small, seemingly unrelated, whatever

-- and were stunned at the length of the list. Most were physical, a few

were cognitive such as memory loss and a hard to describe tendancy to

passivity that she had never had (waiting for others to make decisions, and

when we went out to eat ALWAYS ordering whatever the person before her

ordered even it it was something she had never eaten before... weird). So

we went to diagnostic hospital in Houston and the neuro only took about 10

minutes to come up with OPCA. Interestingly, she listened to all the

symptoms and then asked about the violent dreams thing which seemed to

clinch the dx for her.

We tracked down a top gun specialist at Baylor Neurological (Dr. Tetsuo

Ashizawa) who first referred to her disorder as MSA then 6 months later

changed it to Shy Drager due to the rapid progression of the OH problem.

That was two years ago.

A year or so ago, when she was still able to stand and transfer with help,

she complained of her feet feeling nailed to the floor. That must be the

'heavy legs' thing I see discussed. She has just started to have problems

with tremor although her coordination problems have been so severe for quite

a while that she has been unable to use her computer and can only just

manage to feed herself.

At times her disorder has seemed to be progressing so rapidly that I can

tell the difference between my visits which are only two days apart.

Terrifying! At other times, she seems to almost plateau, or to lose ground

very slowly so that she seems to not change much for two or three months at

a time.

I think this whole thing is pretty random. It's as though each of the

patients loses some brain cells all the time, but in different areas of the

brain. If the damage hits 'critical' areas, it shows up right away. If we

are not seeing visible losses, I assume the cell death is occuring either in

less used parts of the brain, or in areas that the damage is not visible

(reduced cardiac function would not show up as obviously as urinary

problems).

So for those of you who see rapid changes at times, take heart that it is

more a roller coaster than a down hill plunge. And be assured that there is

most likely more time than you think when you first get the diagnosis and

see the decline. You will be amazed at how much the patient's determination

can impact mobility and quality of life.