Re: New to Group

[Guest guest]

,

I'm sorry for your loss. But you have definitely come to the right

place for support and understanding. I just wish it didn't have to be

under these circumstances.

You are in my thoughts and prayers.

Big hug,

Jo-Ann

[Guest guest]

Kathi,

Thanks for joining our group. As is the case with the HSPers on the

HSP email list, this is also a fabulous group. But you'll soon see

that for yourself.

As you know working with me to form a foundation to serve those with

PLS, HSP and related disorders, my roots are here with PLSers.

I have been recently received several private messages from PLSers

offering to volunteer their time for the foundation. I know that with

the support of the PLS community, and the HSP community, we will find

a cure.

Thanks again for joining us.

Mark

> Hello PLS group,

>

> I come from the HSP community, and am co-chairing the committee with

> Mark Weber and Dr. Fink to form a foundation to serve HSP, PLS

> and related disorders. This committee has 20 members, several from

> the PLS community.

>

> This is an exciting opportunity to merge communities that share

> fundamental similarities in causes and symptoms and to combine forces

> to advance research and provide patient support. Researchers feel

> findings for one particular disorder under this umbrella may be of

> benefit to all. Recent discoveries are very exciting!

>

> I live north of Boston and have been organizing the only HSP regional

> group in the U.S. We have held 2 conferences featuring presentations

> by experts and one informal social/support group.

>

> I am organizing our 2nd luncheon gathering on Saturday, December 1 at

> 11:00 a.m. at a restaurant in Chelmsford, MA. There is a social

> outing planned after the lunch/meeting for those interested.

>

> I am traveling to Atlanta the following weekend, and am organizing a

> lunch meeting on Sunday, December 9 at 11:00 a.m. near the airport.

> There is a chance Dr. Fink will attend that meeting.

>

> If any PLSers are interested in attending either of these, please

> send me an email to: KathiPro@a... and I will give more details.

>

> I work full-time and also do a lot of other volunteer activities for

> the HSP community. I have heard a lot of wonderful things about your

> community, and look forward to hopefully working with some of you on

> this new foundation to serve us all.

>

> Kathi

[Guest guest]

Kathi,

I would very much like to attend your meeting in Atlanta.

Sincerely,

Jane Anne King

new to group

Hello PLS group,I come from the HSP community, and am co-chairing the committee with Mark Weber and Dr. Fink to form a foundation to serve HSP, PLS and related disorders. This committee has 20 members, several from the PLS community. This is an exciting opportunity to merge communities that share fundamental similarities in causes and symptoms and to combine forces to advance research and provide patient support. Researchers feel findings for one particular disorder under this umbrella may be of benefit to all. Recent discoveries are very exciting! I live north of Boston and have been organizing the only HSP regional group in the U.S. We have held 2 conferences featuring presentations by experts and one informal social/support group. I am organizing our 2nd luncheon gathering on Saturday, December 1 at 11:00 a.m. at a restaurant in Chelmsford, MA. There is a social outing planned after the lunch/meeting for those interested.I am traveling to Atlanta the following weekend, and am organizing a lunch meeting on Sunday, December 9 at 11:00 a.m. near the airport. There is a chance Dr. Fink will attend that meeting.If any PLSers are interested in attending either of these, please send me an email to: KathiPro@... and I will give more details. I work full-time and also do a lot of other volunteer activities for the HSP community. I have heard a lot of wonderful things about your community, and look forward to hopefully working with some of you on this new foundation to serve us all. Kathi

[Guest guest]

HI,

MY HUSBAND DON WAS FIRST DX WITH PROBABLE ALS THEN CHANGED TO PLS. HE HAS

NOW BEEN CHANGED TO ALS AGAIN. IT TOOK ALMOST A YEAR FOR THE DX. AND NOW A

YEAR LATER HE HAS PROGRESSED SO FAST WITH HIS CONDITION THAT THEY HAVE

DECIDED THAT IT IS ALS.

HE IS ON ALS MEDS THAT ARE TO SLOW THE PROGRESS. IF IT'S SLOWED I DON'T

KNOW HOW.

IN THE YEAR HE WENT FROM FALLING SOMETIMES AND BEING SOMEWHAT STIFF WITH TOE

DROP TO A CANE THEN QUAD CANE AND NOW A WALKER FOR IN THE HOUSE OR SHORT

DISTANCES. WE HAVE A WHEEL CHAIR FOR HIM THAT I FLING IN AND OUT OF THE

TRUNK OF THE CAR WHEN HE NEEDS IT. HE IS STILL DRIVING BUT TOLD ME

YESTERDAY THAT HE IS NOT GOING TO BE ABLE TO DO THAT ANY LONGER. (I DON'T

KNOW HOW HE DID BEFORE) JUST TO GET HIM IN A CAR IS A MAJOR PROCESS. I'M

TRYING TO BUY A USED VAN THAT IS TOTALLY EQUIPPED BUT HAVE NOT BEEN ABLE TO

DO THAT YET. IF WE DON'T GET IT SOON I WILL HAVE TO FIND ANOTHER ONE.

WE NEED A HANDICAPPED BATHROOM VERY BAD BUT THEY WANT 16,000-TO 20,000 TO

PUT ONE IN. WE JUST CAN'T AFFORD THAT. WE WENT TO WSOS TODAY FOR HELP..

THEY MAY BE ABLE TO PUT ONE IN ON AN EMERGENCY BASIS AND WE WILL NOT HAVE

TO PAY FOR IT UNTIL THE HOUSE IS SOLD AT A LATER TIME. WE SURE HOPE IT GOES

THROUGH.

THERE IS SO MUCH MAIL FLYING OVER THIS FRIENDS THAT I AM HAVING A TERRIBLE

TIME KEEPING UP WITH IT.

I JUST DON'T HAVE THE TIME TO READ AND UNDERSTAND ALL THE MEDICAL

INFORMATION BEING SENT OUT. IS THERE ANYONE THAT WOULD LIKE TO CONDENSE

THIS FOR ME WITH SOME VERY SIMPLE EXPLANATIONS OTHERWISE IT IS ALL LOST WITH

ME AND I WOULD LIKE TO SHARE THIS WITH HIS NURO.

THANKS - LOVE TO ALL

BONNIE & DON

new to group

> I guess what I really want to know is has any of been dxd first with

> ALS then later PLS? ALS is also dxd by way of exclusion. I am in a

> wheelchair for several years now and hands are starting to go as far

> as small motor skills. You all seem to be doing much better than I

> am, so that is why I am asking and questioning this dxd so much.

>

>

>

>

>

>

[Guest guest]

I also got a diagnosis from exclusion. They ruled everything else out so PLS

was the only thing left! It took about 8 years & a trip to the Mayo Clinic

tho to arrive at that. Beth

[Guest guest]

I also got a diagnosis from exclusion.

Hi all,

This diagnosis stuff is tricky, because diagnosis by exclusion is for HSP, an allied disorder of PLS.

Of course, with HSP (hereditary spastic paraparesis), they also look for family history to help make a diagnosis.

The extra tricky thing, though, is that just because there isn't family history doesn't automatically mean it isn't HSP. According to Dr. Fink (the recognized #1 researcher in HSP), some 30% of those with HSP do not show family history.

Family history may not be evident - parents are unknown, parents died before showing symptoms, the disorder "skipped" a generation, the disorder is a recessive type, it is a first HSP mutation in a family.

Sometimes, time just has to pass to see if other symptoms arise to help make a proper diagnosis, or other family members to begin to present symptoms. I have met many people who thought they were the only ones in their family to have HSP (diagnosed with Apparently Sporadic HSP), but then another family member developed symptoms so that became HSP. I've met people originally diagnosed with PLS and then it was changed to HSP in time when typical-PLS symptoms did not appear, and also those who were diagnosed with HSP and then changed to PLS.

I guess it doesn't really matter, in that treatment for these allied disorders is the same - treatment of spasticity and weakness. And hopefully strides in a cure towards one will also apply to others.

kathi

(H)SPer

HSPinfo.org

[Guest guest]

KAG,

Originally my neurologist (from Stanford) thought I might possibly have ALS but when he referred me to Dr. (ALS specialist at Calif. Pacific Medical Center, which I think was renamed as Forbes Norris) and all the EMGs were done, I was told by Dr. it was definitely not ALS. After more and more tests, I asked for a referral to Mayo Clinic in Rochester where I was given the dx as "probable PLS". This whole process took close to 4 years. I heard numerous possibilities but PLS seemed to stick.

I now go to the UCSF ALS Research Center. I think they have included about 6 with PLS in their studies.

Gentner

Fremont, CA

[Guest guest]

I was also told it was a diagnosis of exclusion. After a multitude of tests were conducted and other neurological diseases ruled out, my neuro concluded I had PLS. I think many here will state the same. The major difference I recall is that some were diagnosed quickly and others' neurologists took many months to years before providing a dx.

(DE)

Re: NEW TO GROUP

My neurologist says it's a diagnosis of exclusion - you exclude otherdisorders as the cause of your symptoms. He said there are no tests for thedisorder, as with many other neurological disorders (such as Parkinson's). Iwas diagnosed in '94 with sympathetic dystrophy after having worseningsymptoms for a year. However, I never really thought that was my problem.Since I never got worse, I just didn't pursue any other causes for a longtime cause I thought maybe part of my problem was anxiety. I have ups anddowns and because I've been in a down cycle lately due to job stress, Idecided to get another opinion on the advice of my doctor. My problem is onlyin my right leg - I use a 4 wheeled walker to get around & keep me fromfalling. It's never progressed beyond the leg, so I'm very lucky. There isalso a disorder called "Stiff Man Syndrome" that is very similar to what Ihave. It is also a neuromuscular disorder.kgorup7700@... wrote:> THANKS SO VERY MUCH FOR THE RESPONSES I HAVE RECEIVED ON MY FIRST> POSTING: ALS NOW PLS. I AM VERY INTERESTED IN WHY DOCTORS DXD YOU> ALL WITH PLS AND NOT ALS OR WERE U FIRST DXD WITH ALS AND THEN> CHANGED TO PLS. I NOTICED THAT QUITE A FEW OF U LIVE IN CALIFORNIA.> I TOO LIVE IN CALIFORNIA FIRST SOUTHERN AND NOW NORTHERN. I WAS DXD> IN 1991 WITH BULBAR ONSET ALS AND PARTICIPATED IN THE RILUTEC TRIALS> FOR 18 MONTHS. AFTER TALKING IN A ALS CHAT ROOM TO MANY PALSI HEARD> ABOUT PLS. THEN ASKED MY DOCTOR IF I COULD POSSIBLY HAVE PLS, SHE> SAID THAT SHE HAS THOUGHT THAT I WAS FOR YEARS. STUNNED TO HEAR THIS> I FORGOT TO ASK HER WHY SHE HAD NEVER MENTIONED IT TO ME. AND IF> THERE WAS A TEST THAT I COULD TAKE. DO ANY OF U GO TO A ALS OR MDA> CLINIC? I HAVE GONE TO THE FORBES NORRIS ALS/MDA CLINIC FROM THE> START.> THANK YOU FOR THIS BOARD TO POST TO> KAG>>>>>

[Guest guest]

I've been diagnosed with PLS since Dec. 1999. I walk with a walker but

need a scooter or wc if I am going more than the equivalent of a half block

or so. My hands are quite affected- I am unable to turn pages, can't give

shots or draw blood any more, have trouble opening mail, soda cans, chip

bags, etc. and can't wave good bye with my left hand at all- slow with my

right. I have had hand problems that pre date my walking

difficulties. Not sure I'm doing better- probably only doing different

:-) Lavon

At 10:25 PM 11/27/2001 +0000, you wrote:

>I guess what I really want to know is has any of been dxd first with

>ALS then later PLS? ALS is also dxd by way of exclusion. I am in a

>wheelchair for several years now and hands are starting to go as far

>as small motor skills. You all seem to be doing much better than I

>am, so that is why I am asking and questioning this dxd so much.

[Guest guest]

My aunt on my mother's side was diagnosed with ALS in

1994 or 95. About 4 years later they changed her

diagnosis to PLS because she had no atrophy, in fact

it appeared that her muscles had gotten stronger, she

just had trouble with balance and stiffness of the

arms, legs, and face muscles. Her voice started

slowing and then a few years later her eye started to

" stick " in a looking up position so they changed her

diagnosis again! Now it is Progressive Supranuclear

Palsy but I'm not sure what she really has. Right now

she can walk but only with help, she can't feed

herself or dress herself. You can't understand her

other than a few selective sounds (you get used to

what the sounds mean).

I think there is a very fine line between PLS and ALS,

with the ratio of upper to lower motor neuron

involvement being the only difference.

In ALS, there can be great variations between

phenotypes. I think when all is said and done, they

will determine that there are PLSers that are closer

to HSP, and then there are PLSers that are closer to

ALS. But only a very few will be in a " pure " PLS

category after many years of disease duration.

There are plenty of PLSers that are fairly disabled,

they just aren't real active on the board. And some

PLSers have been rediagnosed as ALS.

I'm curious, did your emg's show lmn involvement?

There is an interesting study of 20 plsers that you

might be interested in. I'll attach.

Thomson

--- kgorup7700@... wrote:

> I guess what I really want to know is has any of

> been dxd first with

> ALS then later PLS? ALS is also dxd by way of

> exclusion. I am in a

> wheelchair for several years now and hands are

> starting to go as far

> as small motor skills. You all seem to be doing

> much better than I

> am, so that is why I am asking and questioning this

> dxd so much.

>

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

I also was told that PLS was called the garbage disease. When you don't

have any idea whats wrong, PLS!!

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

In a message dated 11/30/2002 3:02:50 PM Eastern Standard Time,

pyoung97444@... writes:

> At what time does exercise benefit us the

> most? before meals, after meals

You are doing great to get your A1c down that much in just a few months.

Exercise works better for me after eating.

Eunice

[Guest guest]

pyoung wrote:

<< my Alc1 was 13.79 at the time and is now at 7.9. >>

Congrats on bringing your HbA1c down.

<< At what time does exercise benefit us the most? >>

Since it is primarily the carbohydrates in the meals we eat that

spike us, you should gain the most benefit if you exercise following

meals.

<< I've also been told to stay away from the low carb diets but have

also read that Sugar Busters is very beneficial from diabetics.>>

We haven't been able to find any scientific basis for that warning. I

think you are referring to ketogenic-level low-carbohydrate diets.

That involves carbohydrate intake of 20-40 grams a day. I am a

moderate low-carber, eating around 100 grams a day. You could give

that a try for awhile and see how you do. But I know people who have

been eating a ketogenic-level diet for years and don't appear to

suffer any ill effects. The benefit of a ketogenic diet is it really

aids in weight loss, if that is a goal of yours.

Thanks for introducing yourself! )

Susie

[Guest guest]

,

I was diagnosed with diabetes on Sept 16th 2002 and I was scared too, so you

are not alone there. Dealing with something new is always scary,

particularly when we have a lot to learn now about eating, exercise,

lifestyle, blood monitoring etc etc etc. My suggestion is to read, read,

read, and ask endless questions, and the scariness will go away.

Alison

in New Zealand

[Guest guest]

Hello and welcome,

Aside from diabetes I also suffer from chronic Migraines. They come

upon me once or twice a year. The headaches hit me everyday for about

a month (between 1 to over 20 hours in a day). I have been prescribed

various pain medication for my Migraines, none of which have worked,

some things I have done on my own that helps somewhat...

1. Meditation in a dark room. You can try this with or without music

playing in the backround (I personnally love listening to Miles

" Kind of Blue " album during these sessions).

2. (if you are not allergic) American Ginsing (in liquid form)... It

taste vile straight (but for me more effective) Try putting about ten

drops under your tounge or in a cup of Pepermint tea.

I hope these suggestions are helpful.

Herby

> Hi Everyone,

> Though I'm glad to have found this group, I'm not happy that I

had cause

> to! Yesterday I found out that I'm diabetic. It's not exactly

suprising as

> it runs in my family, and it does explain a lot of things. I'm

hoping that

> now that I know this and can begin to control it, that I'll stop

feeling like

> crap physically.

> So, I'm going to be absorbing a lot of information from this

group and

> asking a lot of questions. My first question has to do with

debilitating

> headaches I get almost every month around my menstrual period. My

ob/gyn had

> prescribed something for them assuming that they are hormonal,

which actually

> seemed to have made them worse. I'm wondering if they could be

related to

> the diabetes, or even to my diet because I tended to eat sweet/fat

things

> before my period. I think they are tension headaches. They are so

bad that

> sometimes I have to call in sick to work.

> The " Beyond Regret " post helped a lot. Thank you to whomever

posted it.

> I'm dealing with a lot of fear and other emotions right now.

>

>

>

>

[Guest guest]

Now that sounds like a good idea! Maybe I can get some of the stores around

here to do that. Anyone have a website or email address for major stores?

Maybe we can start an email campaign.

I know that for a while Safeway had shelf labels that pointed out low-fat,

low-sugar, and low-sodium foods. But that went away.

Re: new to group

My local Kroger store has a class; they have a dietician give a tour of the

whole store, pointing out what is good and what is bad, showing how to read

lables, etc. One has to sign up ahead of time, but it is free.

---

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.455 / Virus Database: 255 - Release Date: 2/13/2003

[Guest guest]

Hi, DJ, welcome...

Have they told you yet what they want to do for treatment?

Topper ()

On Mon, 18 Oct 2004 19:54:53 -0000 "forthewriteone" writes:

Hi Everyone. I'm 35 and I've just recently been diagnosed with Hashimoto's Disease. I'd been tested in the past, but this is the first time I've ever gotten a confirmation. This has been an ongoing quest for answers for 10 years now... with one doctor even telling me it was all in my head. I went online and still don't truly understand what I am to expect. Thanks, DJ

[Guest guest]

Hi, DJ, welcome...

Have they told you yet what they want to do for treatment?

Topper ()

On Mon, 18 Oct 2004 19:54:53 -0000 "forthewriteone" writes:

Hi Everyone. I'm 35 and I've just recently been diagnosed with Hashimoto's Disease. I'd been tested in the past, but this is the first time I've ever gotten a confirmation. This has been an ongoing quest for answers for 10 years now... with one doctor even telling me it was all in my head. I went online and still don't truly understand what I am to expect. Thanks, DJ

[Guest guest]

Hi, DJ, welcome...

Have they told you yet what they want to do for treatment?

Topper ()

On Mon, 18 Oct 2004 19:54:53 -0000 "forthewriteone" writes:

Hi Everyone. I'm 35 and I've just recently been diagnosed with Hashimoto's Disease. I'd been tested in the past, but this is the first time I've ever gotten a confirmation. This has been an ongoing quest for answers for 10 years now... with one doctor even telling me it was all in my head. I went online and still don't truly understand what I am to expect. Thanks, DJ

[Guest guest]

Hi .

They have me on a minimal dose of Synthroid. They found a 14mm solid

nodule in my ultrasound, but said due to small size, Endo is not

concerned. Doing another ultrasound in 6 months. I've been on med

for about three months and yesterday yet another blood test

confirmed the Hashimoto's. I just wonder how long until I start

feeling better?? I feel achy, like I have a permanent flu. No energy

to play with my daughter. I already have mitral valve syndrome, so I

don't know if the palpatations are from that or from hypo.

DJ

> Hi, DJ, welcome...

>

> Have they told you yet what they want to do for treatment?

>

> Topper ()

>

> On Mon, 18 Oct 2004 19:54:53 -0000 " forthewriteone "

> <forthewriteone@y...> writes:

>

> Hi Everyone. I'm 35 and I've just recently been diagnosed with

> Hashimoto's Disease. I'd been tested in the past, but this is the

> first time I've ever gotten a confirmation. This has been an

ongoing

> quest for answers for 10 years now... with one doctor even telling

me

> it was all in my head. I went online and still don't truly

> understand what I am to expect. Thanks, DJ

[Guest guest]

Hi Ian,

Thanks for sharing your story, and welcome to the list. There are a

number of us here in the UK. Unfortunately, as you said, there is

little awareness of the dangers of these drugs here, which seems to

be the problem in many places. Doctors here are maybe, on the whole,

a little more reluctant to prescribe psych meds, especially in

cocktails, but prescription numbers are going up all the time. I have

learned a lot about alternative medicine since I came to this list a

year and a half ago (though it's still only the tip of the iceberg)

and I would not trust my GP to do anything anymore other than maybe

run a few tests. It was quite a revelation for me to discover just

how useless and potentially dangerous they can be.

I was on effexor and citalopram too, they must have been the flavours

of the week here. They didn't do much for me while I was taking them;

but cold turkeying off 6 months of 20mg citalopram was enough to

cause a lot of damage. I still have troublesome symptoms now, though

I am slowly healing.

It sounds like you have discovered a lot about yourself from this

experience. I have heard of other university students having troubles

too; and instead of exploring the reasons for those, they get put on

meds. At least you are willing to question what happened to you, and

consider what your body may have been telling you. If the meds

had " worked " for you, maybe you would still be taking them and not

doing that kind of critical thinking? Believe it or not, this is what

leads many of us to eventually decide that we are better off for

having gone through the problems with the drugs. We found our way to

this list and learned about how to use diet and supplements to heal.

We've learned about the lies and ignorance spread by doctors and big

pharma. I know that for me personally, the blinders would never have

been removed otherwise. Now I know how to properly take care of

myself and my little girl, and for that I am grateful.

You mentioned the loss of your creativity. I have experienced that as

well. Sometimes it comes back in short little bursts. I also have

continuing depression due to my life circumstances, which is also

contributing to the problem. I know how frustrating it is though. You

look at a painting or listen to a song that used to give you such

pleasure, and all you feel is . . . flat. Follow 's advice

and you can begin to heal from this. It can be a slow process,

especially when we are used to taking a pill and expecting things to

get better instantly. But you will get there

The mindfulness meditation will help you a lot. I am just learning

about this myself. recommends anything like this which

stimulates the limbic system; Tai chi and yoga are good.

If you have been off the drugs for more than 6 weeks then it won't be

possible to go back on and do a slow taper. However, there are many

people on this list who discontinued too quickly, or did not taper at

all (including me). Healing usually takes longer in that case, but it

will happen. I suggest you read the files here and learn about how

you can start using diet and supplements to do this. In some ways

we're lucky here in the UK because we're not quite as saturated with

processed junk as the US, and most butcher's shops are full of

healthy grass-fed meat. (It can be hard to get meat over there that

wasn't grain-fed on a feed lot and injected with various things.)

I hope you will keep writing here, and let us know how you are

getting on Ian. We're all on similar journeys and there's so much to

learn.

Best wishes,

.