Re: vision problems - terminology

[Guest guest]

Larry,

The eye problems with MSA are related to cerebellar problems. This does

not happen to all MSA patients, but is a MSA problem. I was just saying

that doctors look at MSA as a series or group of symptoms and they look for

the symptoms that affect most MSA patients. Pam's note yesterday with this

link was great.

http://www.cmdg.org/Movement_/Parkinsons_Plus/MSA/msa.htm

Note under cerebellar signs "

Nystagmus 23%" that is eye problems so it IS associated with MSA.

Note too that "Anisocoria"

is also associated with MSA. That is also an eye problem. Don't

be confused by all this debate going on here - THERE ARE NO ABSOLUTES

WITH MSA. Every MSA patient is different! It all depends on which brain

cells die in which part of the brain as to what symptoms you get. Even Parkinsons

is not an absolute diagnoses today, they still depend on reaction to Sinemet

for guidance. My wife Charlotte had good relief from Sinemet early on, but

toward the end she was lucky to get a hour of relief from Sinemet.

Most of the recent debates have been on semantics and NOT true disagreement.

I have been on the list for many years and people start writing me offlist

with questions that arise from misleading statements. Don't get me wrong

PET may be a very useful tool especially in the future when it is proven

against autopsy, BUT I do not believe that every MSA patient needs a PET

scan to prove or disprove MSA at this time. A few people also got the impression

that PET would somehow cure them. Others got some idea that they should

stop taking medicines because the medicines might be causing the MSA symptoms.

When I say ANYTHING on this list - I am telling you to check with your doctor

about it before doing ANYTHING. Pam takes a more academic approach and gives

you lots of information - which is great, except some people have not learned

the terminology doctors use. IF you do not understand any word your doctor

uses - stop him and ASK what they mean. You are paying them for an explanation

and most are willing to take the time to explain - if NOT consider a new

doctor or at least ask for an appointment to discuss it in layman's terms.

) MSA confusion is not evident in most MSA patients ) BUT doctorese confusion

on the MSA list is a huge problem ) Try these links from the links part

of our website if you have a question:

(found by Jim Todd in 1999)

http://cancerweb.ncl.ac.uk/omd/ (Pam this is the first one - update

the link please)

http://www.hhb.infoxchange.net.au/glossary.htm

http://www.texasneurosciences.com/PatientInfo/glossary.htm

* Pam - the Parkinson's one must have moved also and I can not find it -

Bill*

Understanding and communication are the beginning of wisdom.

Take care, Bill Werre

Larry Arp wrote:

Hi to everyone.I've been away for quite a while, and I have been reading about all of the vision happenings. About Feb. of this year, I chose to stop driving in part due to vision difficulties. I couldn't really explain what was happening, but new there was a problem with depth perception and not being able to smoothly scan my feild of vision while riding my motor cycle or driving my car. Instead of my eyes moving smoothly from one side to the other and back again they seem to jerk, stop, focus, jerk, stop, focus, etc. Of course this really can mess up the reaction time needed for various driving situations. Man, I'm only 54 and I have to be picked up and driven to work and where ever. I think it was harder for my teriffic wife, because she had to do her stuff and cart me around to do my stuff to.Patty, my wife, suggested getting an eye patch. Now my double vision, as it turned out to be, has been resolve

d and I'm driving again. What joy! I know that some of us have double vision in each eye so I'll just wait and see (HA) what happens next. Last October I started using my wheelchair at work due to falling down on the job, (Ha again), up to 14 times a day. Now I'm only sitting down on the job.I have had some fun with the patch though. I was waiting for my order at a Whataburger sitting in my wheelchair wearing my patch. Out of the corner of my patched eye, I could see a couple of young gals looking at me. I looked towards them, they looked away. I looked away, then I looked back at them and caught them looking at me. What a sight, (we are talking about vision here), I must have been to them. I said that I was practicing to be a pirate. They looked surprised, so I continued. I'm going to have one of my legs cut off, but I don't know which one, then have a pogo stick duct taped to my thigh so I can hop around on it. The

y must have thought I was a nut, but I had fun!And here I thought I was the only one with eye problems that "might" be related to MSA. Whether it is or not, I know that EYE have plenty of company. Larry of TucsonIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

I take the academic approach because I don't feel qualified to always

interpret the information or give an opinion as to its relevance for a

particular individual's case. Sometimes I'll try if the topic is one I've

seen many times. The intent is for people to educate themselves and their

doctors by discussing the latest research with them.

Although the recent discussion about PET scans was new for this list, in

reviewing the information we already had access to at

http://www.emedicine.com/neuro/topic671.htm , it was discovered that some

PET scan information was there all along, we just hadn't taken notice of it

and no one had ever explained it in layman's terms. This is why the

experiences of people on this list are so important. I'm so grateful to all

those who do share and search and question because that's how our knowledge

base grows.

Hugs,

Pam

----- Original Message -----

> Pam takes a more academic

> approach and gives you lots of information - which is great, except some

> people have not learned the terminology doctors use. IF you do not

> understand any word your doctor uses - stop him and ASK what they mean.

> You are paying them for an explanation and most are willing to take the

> time to explain - if NOT consider a new doctor or at least ask for an

> appointment to discuss it in layman's terms.