new member

[Guest guest]

Hi,

First, welcome.

Second, you are hopefully aware by now that HSGs are very inaccurate in

determining the extent or type of a mullerian anomaly - though they are

generally used to determine whether or not an MA exists. Weird, huh?

The MRI can be very useful, provided it is done right, and interpreted

right. Unfortunately, many women are mis-diagnosed because their MRI

was done poorly, or the radiologist who read it didn't really know what

they were looking at, or the RE or obgyn who receives the report

accepted it at face value without examining the images themselves.

The 8-9 mm transverse measurement indicates the thickness - side to

side. Though it's unclear from the description whether it's 8-9 mm

just at the top of the septum, or the entire length.

" from the superior extent of the endometrial canal " means (I think) the

length from top to bottom of the septum. From my understanding, 1 cm

or less is considered nominal. 1.5 is a bit gray - there are a number

of women who have been 1.5cm AFTER resection, and their surgeons have

opted not to do another resection, and they've done very well. That

being said, there have been others that have had continuing problems

until they were resected to under 1.5. It's often a judgement call on

the part of the doc.

> The septum appears to contain some myometrial tissue and

> there

> does not appear to be significant indentation of the myometrium over

> the area of the spetum. I also have a number of dilated parametrial

> vessels...whatever that means.

Ok, here's my best stab at this (some of our best " interpreters "

recently have had their babes, so they aren't on the board -

understandably!) When it says that the septum contains some myometrial

tissue, it means that it has some muscle tissue characteristics in it -

i.e., some of the septum is composed of the same tissue that the walls

of the normal part of your uterus are composed of. The reference to

dilated parametrial vessels means (again, I think) that the blood

vessels in the tissue on both sides of the cervix are expanded.

> I do not consult with my ObGyn until next week. In the case of a

> septum, it was mentioned that I would have a hysterscopy to retract

> the septum, followed by up to 6 trials of clomid with timed

> intercoares before being referred for IVF.

Whoa. Slow down. First, I would recommend that you don't proceed with

ANY surgery without a second opinion, preferably by a reproductive

endocrinologist who has A LOT of experience with MAs. Especially since

your septum may be so minor as to not warrant surgery. If your septum

is as shallow and narrow as you've been told, you may not need surgery

to resect it, but this may be something that can't be determined until

they do a hysteroscopy to visualize the septum (and resect it, if need

be, at the same time).

Also, and please forgive the question, have you had any history of

losses? Since you are in more of a gray area with the size of the

septum, you may do just fine without surgery. We have women on the

board who have gone full term (or nearly full term) with complete or

nearly complete septums.

Second, do you have any history of infertility? Simply having an MA is

NOT an absolute indication that you need to pursue hormonal therapy or

assisted repro techniques.

Finally, even though the chances for loss with a complete, thick, wide,

" really bad " septums can run as high as 80% (according to some

sources), if you DO have a septum, it is likely not in the " really bad "

category, and even if it WERE in the " really bad " category, it is very

likely operable (and nearly ALL are operable). Resection improves

chances of carrying a successful pregnancy back to, or nearly back to,

that of a non-MA uterus.

Hope this helps,

Ann

__________________________________________________

[Guest guest]

Hi Ann,

Thanks so much for the input. To try to answer you questions...

I will find out on December 13th what my ObGyn will recommend next

given the new results. I obtained a copy of my MRI report prior to

my follow-up consultation.

Given previous discussion with my ObGyn I beleive the next step will

be to perform the hysterscopy. I am unclear at this time if he will

perform a laprascopy at the same time (it is possible given it is a

mandatory part of the protocol before moving to IVF). He did

indicate that the hys/lap was the gold standard for diagnostics,

however he wanted to begin with the MRI because it was less

invasive.

I am unaware of the radiologists experience. However the report did

comment that there was no visible abnormality to the outer contour

of the uterus. It did not explain if the transverse width was the

same the entire length of the septum. My ObGyn will receive a copy

of the report and I don't beleive will view the MRI. I actually had

to travel some distance away to recieve the MRI.

I have consulted with two family practitioners with rotations in

obstetrics and gynecology. The first doctor recommeded that I

continue with my ObGyn as he is well recognized for his work in the

field, leading technology, good results and so on. I was also told

by this doctor that an RE was not necessary as I do not have a

hormonal problem. The second doctor is consulting with her

colleages regarding my history, exam findings and any future

recommendations. I am waiting to hear back from her.

I also consulted with a second ObGyn. She indicated that I am in

good hands with my current care provider. That he is more than

qualified to manage my case. That his current managment plan is

appropriate and that he is a " talented gyn surgeon. " She suggested

that I stick with him because I want him on my side in the future

and to manage any pregnancies. She was encouraged by my MRI results

and thought the varicosties were of no clinical significance.

I have not experienced any losses. I have not been able to fall

pregnant at all. We have been trying for 17 cycles prior to the

results of the HSG. My ObGyns position at that time was, " once we

get you pregnant we want to keep you pregnant. "

I suppose we will see what he says next week given the MRI results.

So what do you think? Thanks in advance!

>

> Hi,

>

> First, welcome.

>

> Second, you are hopefully aware by now that HSGs are very

inaccurate in

> determining the extent or type of a mullerian anomaly - though

they are

> generally used to determine whether or not an MA exists. Weird,

huh?

> The MRI can be very useful, provided it is done right, and

interpreted

> right. Unfortunately, many women are mis-diagnosed because their

MRI

> was done poorly, or the radiologist who read it didn't really know

what

> they were looking at, or the RE or obgyn who receives the report

> accepted it at face value without examining the images themselves.

>

> The 8-9 mm transverse measurement indicates the thickness - side

to

> side. Though it's unclear from the description whether it's 8-9 mm

> just at the top of the septum, or the entire length.

>

> " from the superior extent of the endometrial canal " means (I

think) the

> length from top to bottom of the septum. From my understanding, 1

cm

> or less is considered nominal. 1.5 is a bit gray - there are a

number

> of women who have been 1.5cm AFTER resection, and their surgeons

have

> opted not to do another resection, and they've done very well.

That

> being said, there have been others that have had continuing

problems

> until they were resected to under 1.5. It's often a judgement

call on

> the part of the doc.

>

> > The septum appears to contain some myometrial tissue and

> > there

> > does not appear to be significant indentation of the myometrium

over

> > the area of the spetum. I also have a number of dilated

parametrial

> > vessels...whatever that means.

>

> Ok, here's my best stab at this (some of our best " interpreters "

> recently have had their babes, so they aren't on the board -

> understandably!) When it says that the septum contains some

myometrial

> tissue, it means that it has some muscle tissue characteristics in

it -

> i.e., some of the septum is composed of the same tissue that the

walls

> of the normal part of your uterus are composed of. The reference

to

> dilated parametrial vessels means (again, I think) that the blood

> vessels in the tissue on both sides of the cervix are expanded.

>

> > I do not consult with my ObGyn until next week. In the case of a

> > septum, it was mentioned that I would have a hysterscopy to

retract

> > the septum, followed by up to 6 trials of clomid with timed

> > intercoares before being referred for IVF.

>

> Whoa. Slow down. First, I would recommend that you don't proceed

with

> ANY surgery without a second opinion, preferably by a reproductive

> endocrinologist who has A LOT of experience with MAs. Especially

since

> your septum may be so minor as to not warrant surgery. If your

septum

> is as shallow and narrow as you've been told, you may not need

surgery

> to resect it, but this may be something that can't be determined

until

> they do a hysteroscopy to visualize the septum (and resect it, if

need

> be, at the same time).

>

> Also, and please forgive the question, have you had any history of

> losses? Since you are in more of a gray area with the size of the

> septum, you may do just fine without surgery. We have women on the

> board who have gone full term (or nearly full term) with complete

or

> nearly complete septums.

>

> Second, do you have any history of infertility? Simply having an

MA is

> NOT an absolute indication that you need to pursue hormonal

therapy or

> assisted repro techniques.

>

> Finally, even though the chances for loss with a complete, thick,

wide,

> " really bad " septums can run as high as 80% (according to some

> sources), if you DO have a septum, it is likely not in the " really

bad "

> category, and even if it WERE in the " really bad " category, it is

very

> likely operable (and nearly ALL are operable). Resection improves

> chances of carrying a successful pregnancy back to, or nearly back

to,

> that of a non-MA uterus.

>

> Hope this helps,

>

> Ann

>

>

>

> __________________________________________________

>

[Guest guest]

Hi,

Would it be possible for you to obtain the actual films from your MRI?

This is just my opinion, but I *really* think that if possible, you

should consult with an RE, and that you should provide that RE not with

only the MRI report, but with the actual MRI films.

I may be going out on a limb here, but by your use of the phrase " fall

pregnant " , I'm guessing you're not in North America? If you are in

Cananda or the US, an RE is *really* your best bet for getting someone

with lots of experience with MAs.

(Note, though, that not all REs are well-versed in MAs. In fact, some

of them try NOT to deal with patients with MAs if they are also

candidates for IVF or other assisted repro technologies, as the

patients with MAs may skew their success rates down, and they are ALL

about the success rates).

If you're in the UK, or Australia, for example, I understand that their

health care systems work quite a bit differently, so I can't really

speak to those situations. But I have to imagine that they have

specialists that are comparable to REs.

> I have consulted with two family practitioners with rotations in

obstetrics and gynecology.

I am not trying to impugn the abilities of the family practitioners

that you saw, but I want to point out that MAs are SO rare (relatively

speaking) that even really good, capable, wonderful family

practitioners generally do not see them enough to really be on top of

them. Even really good, capable, wonderful *obgyns* typically don't

see enough MAs on a regular basis to really be on top of them. I

*know* that there are some terrific obgyns with exceptional surgical

skills, and I don't want to discount them, but MAs are (again) so rare

that I (personally) wouldn't want to be a " practice patient " for a doc

that just doesn't see MAs on a regular basis.

> I was also told

> by this doctor that an RE was not necessary as I do not have a

> hormonal problem.

This is a very common misconception (no pun intended). Hormonal issues

are only ONE of the things that REs take care of. Infertility issues

are also only ONE of the things that REs take care of. Again, SOME REs

focus only on hormonal/infertility issues, but not all of them. And by

nature of their training, they are MUCH MORE LIKELY to see hundred of

MA cases over the course of their careers, rather than maybe a few

dozen at most.

My old obgyn practice (that I had been with for 8 years) never had more

than 5-8 MA patients in their practice at any given time. When I found

out about my MA, I asked if I should have either of the founders of the

practice (both of whom had been obgyns for 20+ years) take over my

care, but between the two of them, and the THOUSANDS of patients that

they come through their doors during that time, they had only seen (at

most) a few dozen MA patients. My RE, on the other hand, devotes a

*significant* portion of her practice to MA patients - including those

that have no other hormonal/infertility issues, but that required

diagnosis and surgical intervention.

Also, I can tell you that in my process of trying to finding someone

who could really tell me what was going on, I asked several other

doctors about which type of specialist that I should see for diagnosis

and possible treatment, and they ALL said that my best bet was to find

a good RE - primarily because they would be the most well-informed and

experienced (diagnostically and surgically) about the issue.

> We have been trying for 17 cycles prior to the

> results of the HSG.

I'm so sorry that you've been trying for so long without success. By

the way, there is quite a bit of evidence that HSGs actually INCREASE

your chances of getting pg for the first 3 cycles after the procedure,

by the way. The fact that you've been trying for so long may in and of

itself be an indication that you should consider stepping things up to

see an RE (again, just my opinion).

I am *really* not trying to push you to do something you don't feel

comfortable doing. I just want to encourage you to be an advocate for

your own health, and that means finding the best doctor *for your own

situation*.

Hope this helps a bit,

Ann

__________________________________________________

[Guest guest]

Hi, Lois, welcome to our list. I'm sorry you had to join us, but you'll

get good support here. I've already posted my newby letter to another

newby today but maybe you didn't see it so I'll do it yet again.

BTW, I've recently become a catmommy to an Older Cat. She's been

coughing a lot so I took her to the vet and he after some blood tests

and X-rays (and $400+ from me) told me she had asthma. So what can you

do to treat cat asthma? He said steroids. Uh-uh, no way, I said...I

know prolonged steroid use can cause diabetes (in both cats and people)

and one diabetic in this family (me) is enough! So...she has her little

coughing spells but she gets over them nicely.

Speaking of which...are you all aware that you can post photos? I

forget the exact process but, Rick, I have a nice new photo of me and

my cat that would be fun to show you all. Can I send it to you offlist

and you post it for me? Her name is Fluffy -- because she's a

shorthaired cat, of course.

Anyway, here's the newby letter:

First of all, let me refer you to two of the best books about diabetes.

Read 'em and you'll learn a lot:

The first one is called

" The First Year, Type Two Diabetes, An Essential Guide for the Newly

Diagnosed " by Gretchen Becker. Gretchen is a list member and her book

is an excellent guide. It's in paperback and available online from

Amazon if your local bookstore doesn't have it.

The second book is called

" Dr. Bernstein's Diabetes Solutions " by K. Bernstein, M.D. You

can get it from the library but it's such a good reference that you

really should have it in your home library. Dr. Bernstein is a longtime

type 1 who controls his diabetes using a lowcarb diet as well as

insulin.. Many of us - both type 1 and 2 -- on this list have found

great success using his plan or a modified version thereof.

.

And here's the URL to Dr. Bernstein's website, where there's lots of

good stuff:

http://www.diabetes-normalsugars.com/index.shtml

These two books will give you good basic information on the ins and

outs of diabetes management.

I would further refer you to an excellent informational website titled "

" What They Don't Tell You About Diabetes "

http://www.geocities.com/lottadata4u/

If it isn't there for some reason, let me know and I can email you the

contents -- I have it in my archives now.

I would also refer you to Mendosa's website, where

there's a wealth of diabetic information and good links. He also has

an online diabetes newsletter which is very good. It's also an

excellent source for information about the GI index (glycemic index).

www.mendosa.com

There's one thing that's sure to make BGs rise and that's carbohydrates.

Cutting out high GI carbs is an excellent way to control your BGs and

the more you cut, the better. Most of us find that the " whites " --

breads, cereals and pastas, in fact anything made with grain - will

raise our BGs. Also, rice and potatoes will do the same. And of course,

cakes and cookies and sweets of all kinds, including fruits and fruit

juices.

Watch out for " low calorie " foods; often they're higher in carbs. Learn

to read food labels.

Dr. Bernstein recommends about 40 carbs a day total. This is really only

for the dedictated low carber and IMHO hard to maintain over the long

run. However, I've read that the average American eats about 300 carbs a

day, so the truth is somewhere in between. The best thing you can do

for yourself (if you haven't already) is buy a meter and use it

FREQUENTLY. At the beginning you want to learn how different foods

affect your BG and to do this you need to eat one food at a time,

testing first...then test one and two hours afterwards. Weigh out the

amounts and keep good notes. You'll use up a lot of strips in the

beginning but the rewards are definitely worth the expense and bother

because in the end, you'll know what foods to avoid and which are okay.

Diabetes is a very individual disease and we often say YMMV - " your

mileage may vary " -- what works for one may not work for another.

You want to aim for postprandial (two hours after meal) BG of 120.

Keeping your BGs between 70 and 140 are your goals. If you can do this

longterm, you can probably avoid the dreaded consequences of longterm

poor BG control...and I'm sure I don't have to list those for you. (I

will if you want, though).

Here's my own list of pretty lowcarb veggies:

Spinach

Cauliflower

Broccoli

Summer squash (zucchini, crookneck)

Spaghetti squash

Mushrooms

Asparagus

Greenbeans

Cabbage

Sauerkraut

And of course lettuce and avocados which aren't a veggie but a

fruit .but they're definitely lowcarb. I have a large mixed lettuce

salad with avocado every night with dinner.

You can eat a reasonable portion (4-6 ounces) of meat, chicken, fish

without problem; it's all protein, no carbs.

Berries are the lowest carb fruit but even so, you should eat them very

sparingly. Here's the website of the USDA, which you'll find very

helpful. It has carbs, calories, protein, etc.

http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl

It's helpful to have a food scale. A cup measure isn't nearly so

accurate. I use a Salter scale. It weighs in both grams and ounces and

cost me somewhere around $35. I got mine at a local gourmet shop but

they're available online too. Just do a Google search for " Salter food

scales " .

The A1C is a test that measures your average BG for a three-month period

with slightly more weight given to the latest month. All diabetics

should have this test every three months. And you should ask for, and

keep, copies of all your lab reports.

Oh, here's a link to a site that explains some definitions of

diabetic terminology:

http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/P/Pancreas.html

Good luck. And keep those questions coming. There's a really steep

learning curve at the beginning of your diabetes education but hang in

there -- it will all make sense eventually. And remember -- the only

stupid question is the one you didn't ask.

Vicki, diabetic since 1997, A1Cs consistently under 6 for a long time,

no complications, planning on forever no complications,

smile.

New Member

> Hello, my name is Lois.

>

> I am Type 2 Diabetic and was diagnosed about two months ago.

> Currently, I

> am taking 500 mg Metformin morning and night plus Crestor for high

> cholesterol. My biggest challenge right now is getting my weight

> down and

> incorporating regular exercise into my daily routine.

>

> I am the second diabetic in the family. Our 18-year-old family cat

> was

> diagnosed in early 2001. Since then, I have been injecting him with

> eight

> units of Ultralente in the morning and seven at night. He is healthy,

> happy and will hopefully live for several more years. :-)

>

> I am looking forward to learning all I can from all the folks on this

> list.

>

> Blessings,

> Lois.

>

>

>

[Guest guest]

>

> Hello, my name is Lois.

>

> I am Type 2 Diabetic and was diagnosed about two months ago.

Currently, I

> am taking 500 mg Metformin morning and night plus Crestor for high

> cholesterol. My biggest challenge right now is getting my weight

down and

> incorporating regular exercise into my daily routine.

>

> I am the second diabetic in the family. Our 18-year-old family cat

was

> diagnosed in early 2001. Since then, I have been injecting him

with eight

> units of Ultralente in the morning and seven at night. He is

healthy,

> happy and will hopefully live for several more years. :-)

>

> I am looking forward to learning all I can from all the folks on

this list.

>

> Blessings,

> Lois.

>

Lois......... UltraLente was discontinued earlier this year and

stocks of it should be out of stock about now

what will you give your cat when the ultralente is gone?

kate

[Guest guest]

Mollie, Welcome to our group. Its not a easy road that we all have to

travel and its not easy for the people around us either. But its not the end

of

the world either, I've often looked at others with a devastating disease and I

tell myself " well girl you are lucky NOT be in their shoes. " My son in

laws father has had a terrible year and a half with a brain tumor and it looks

like he is not going to be with us much longer. Surgery's and chemo are not a

pleasant thing to go though. PLS is not fun either but its not life

threading just life changing.

We learn to adapt, its not always easily done. The looks and the stares for

me were the hardiest to overlook, but I've done it. It doesn't even bother

me anymore. I find that people can be helpful opening doors or getting out

of my way while I barrel down a shopping aisle. I just feel like I'd do the

same for someone else needing help. So I just except their kindness on my

bumpy road.

I also have a wonderful husband who through the years has made my life

easier. It sounds like you do to and that's great. Stay postive and don't let

stress get to you. Each of us are different in how we progress. Some of us

progress fast others slower and for some we seem to level off and remain the

same for the most part. As we age it can be more difficult too. Aging sucks

to

and I don't care for it at all. I've had PLS since 1991 at the age of 45

starting with my voice and for 5 years that's all I had. After falling and

breaking my wrist PLS really kicked in and in two years I went from a cane to

a four wheel walker and then leveled off.

All I can tell you is try to do what you can and allow your love ones to do

what you can't.

Again welcome, Flora/Florida

[Guest guest]

Hi Mollie,

And unfortunately welcome to this site. I am 48 and my symptoms began

almost 11 years ago in my left leg but it was when i was 42 that I had

to use a cane to help me walk unassisted. Now I use a walker with

wheels outside the home. My speech is affected also. I have been

stable for the past 6 years.

Its very hard at first to come to grips with the fact when you learn

you have a neurological illness but as time goes on you accept it and

get on with your life. You will have your down days but its a case of

2 well known sayings and they are:-

Sink or swim

When life deals you lemons you make lemonade.

I agree that you are fortunate (if you had to have an illness) that

you got PLS when you are 55 and its good that you think that way. I

was way too young and would think the same as you if I were just

getting PLS at 55. So you have a good attitude already. Keep it up!

It sure is a strange coincidence that your sister-in-law got ALS. I

have a friend who has MS and her daughter and mine were good friends

in primary school and we always mention how strange it was that we

both came down with neurological disorders. However she is worse of

than me. When I was in my early 30's, I met a man in his 60's who had

ALS. He was walking around and talking but was wearing a neck brace.

His daughter told me that he had ALS and I was horrified that this

man could be acting so happy and how could he cope with such a

devastating disease. And then a decade later, I end up with a motor

neurone disorder also??? I find that really weird.

This is a great site, as you know. And I couldnt live without the

good people here.

You will cope Mollie. Try and stay positive.

Maureen (Australia)

>

> Hi, I'm Mollie from Texas and I was diagnosed with PLS in June and

> confirmed in Oct. My daughter-in-law contacted your group after we

> all spent Thanksgiving together and she was concerned about how my

> family and I were handling the dx. Not very well, I'm afraid.

>

> My first symptom was just one slurred word in May 2004 and I thought

> how funny I can't say that word. Within a month or two I had my first

> bout of " imbalance " - I later told a dr. it was like my center of

> gravity was off. Around that same time, while I was on my 3 mile

> daily walk, I noticed my left foot just didn't lift up quite right,

> but if I thought about it, I could make it work OK. Since then,

> things have just gone downhill, and it seems the progression has sped

> up in the last 6 months. Maybe that's because I quit working in July

> and didn't have to pretend everything was OK. I was really tired.

>

> I've been reading your messages for a while now and am amazed at the

> positive attitudes you have, and how courageous you are. I don't feel

> that way at all. I am grateful, however, that I made it to 55 yrs. in

> really great health and I got to stay at home to raise my kids. I

> have a loving husband who is as baffled by this disease as I am and

> he is really struggling to accept it. He traveled a lot as our sons

> were growing up and I took care of everything - now I can't even make

> a phone call and be understood.

>

> I think one of the worst things is that my sister-in-law died of ALS

> about 5 years ago. How can 2 brothers marry 2 unrelated women from

> different parts of the country and they both end up with a rare MND?

> We lived quite a distance from them and only saw them yearly, but

> watching the progression of ALS was terrible. My sister-in-law was on

> a ventilator for years and totally immobile as far as I could tell,

> and at the time I thought she was selfish to keep hanging on and

> putting her family through the horror of ALS. Now I know she was the

> most courageous person I've known.

>

> I go back to Dallas to see my neurologist week after next and I'm

> open to any questions I should ask. I'm on only one med, 10 mg.

> baclofen, which seems to help some if I've gotten good rest and

> feeling pretty well. If I'm tired it doesn't seem to help at all. My

> daughter-in-law, Hope, put together a binder with lots of great

> information in it and I am doing some speech and stretching exercises

> she included. I would appreciate any suggestions you might have.

>

> Take good care,

> Mollie

>

[Guest guest]

Hi Mollie,

Where do you live in Texas. I live in Longview.

Getting a light mist right now. First moisture we have had in two

months.

Sorry you are having the familiar symptons. My foot scuffing on the

floor and trouble initiating walking were two of my early symptons.

People complained of slurring but I thought it was the meds. Was

diagnosed early on with Stiffman Syndrome and diazapam was the

treatment of choice.

I went to a Dr. Dewey at Southwest Schl of Medicine, Univ of Texas,

first diagnosis, who said Parkinson, heavy doses of Mirapex, after 3

months and worse said not Parkinson.

First diagnosis from local neuro: Isolated Gait Ignition Failure (it

really exists, he gave me a copy out of his textbook). Second:

Parkinson, Third: Stiffman Syndrom (for yr and half by the best Baylor

in Houston had), Fourth: Primary Lateral Sclerosis or Multiple System

Atrophy, Fifth: PLS. I hope that is that, but going to have my primary

dr. check for Lyme's Disease.

Seems like some symptons come then leave never to return again and

things kinda settle down.

Stay on board, there are people here that can answer just about any

thing.

From the Lone Star State,

Arlene

[Guest guest]

Hi Mollie,

i am new to the group too and posted for the first

time last wk. i was just diagnosed in december and my

speech is also severely affected as is

mobility/walking (AFOs, cane, and sometimes walker).

i'm 38 w/2 kids.

one thing that has helped me is back in the spring i

started working w/a yoga teacher who has some

experience w/folks w/physical challenges. we do mostly

very low-key yoga poses/stretches on the floor and i

am able to do a series of poses on my own as well. we

even do some balance poses against the wall. the yoga

breathing exercises help as well. my neurologist, who

is at duke, and the PT there both said they thought

yoga was one of most effective exercises/relaxation

approaches for people w/chronic neuro issues. i wish

there was yoga for my speech but we haven't found that

yet .

this may not work for everyone but the yoga has

definitely been helpful both mentally and physically,

esp. in working with stiffness/spasms/pain.

anyway, i sympathize w/you very much. i'm also taking

baclofen (40 mg/day), which has really, REALLY helped,

as well as zoloft, which has helped a lot too. like

you, i've been having a hard time dealing with this. i

ran marathons before this all started in the spring of

'04. but i feel like i'm making progress and like this

forum is a God-send.

sarah

--- mollieinman mollieinman@...> wrote:

> Hi, I'm Mollie from Texas and I was diagnosed with

> PLS in June and

> confirmed in Oct. My daughter-in-law contacted your

> group after we

> all spent Thanksgiving together and she was

> concerned about how my

> family and I were handling the dx. Not very well,

> I'm afraid.

>

> My first symptom was just one slurred word in May

> 2004 and I thought

> how funny I can't say that word. Within a month or

> two I had my first

> bout of " imbalance " - I later told a dr. it was like

> my center of

> gravity was off. Around that same time, while I was

> on my 3 mile

> daily walk, I noticed my left foot just didn't lift

> up quite right,

> but if I thought about it, I could make it work OK.

> Since then,

> things have just gone downhill, and it seems the

> progression has sped

> up in the last 6 months. Maybe that's because I quit

> working in July

> and didn't have to pretend everything was OK. I was

> really tired.

>

> I've been reading your messages for a while now and

> am amazed at the

> positive attitudes you have, and how courageous you

> are. I don't feel

> that way at all. I am grateful, however, that I made

> it to 55 yrs. in

> really great health and I got to stay at home to

> raise my kids. I

> have a loving husband who is as baffled by this

> disease as I am and

> he is really struggling to accept it. He traveled a

> lot as our sons

> were growing up and I took care of everything - now

> I can't even make

> a phone call and be understood.

>

> I think one of the worst things is that my

> sister-in-law died of ALS

> about 5 years ago. How can 2 brothers marry 2

> unrelated women from

> different parts of the country and they both end up

> with a rare MND?

> We lived quite a distance from them and only saw

> them yearly, but

> watching the progression of ALS was terrible. My

> sister-in-law was on

> a ventilator for years and totally immobile as far

> as I could tell,

> and at the time I thought she was selfish to keep

> hanging on and

> putting her family through the horror of ALS. Now I

> know she was the

> most courageous person I've known.

>

> I go back to Dallas to see my neurologist week after

> next and I'm

> open to any questions I should ask. I'm on only one

> med, 10 mg.

> baclofen, which seems to help some if I've gotten

> good rest and

> feeling pretty well. If I'm tired it doesn't seem to

> help at all. My

> daughter-in-law, Hope, put together a binder with

> lots of great

> information in it and I am doing some speech and

> stretching exercises

> she included. I would appreciate any suggestions you

> might have.

>

> Take good care,

> Mollie

>

>

>

>

>

>

>

[Guest guest]

Arlene,

We live on South Padre Island now (moved here in July

from Rotan, Tx, about 200 miles west of Dallas) but my

mom lives in Marshall. It sounds like you have been

through just about every diagnosis there is. I

understand Lyme's disease can be treated (cured?).

Good luck with that test. Thanks for replying.

Mollie

--- riddlea@... wrote:

> Hi Mollie,

>

> Where do you live in Texas. I live in Longview.

> Getting a light mist right now. First moisture we

> have had in two

> months.

>

> Sorry you are having the familiar symptons. My foot

> scuffing on the

> floor and trouble initiating walking were two of my

> early symptons.

> People complained of slurring but I thought it was

> the meds. Was

> diagnosed early on with Stiffman Syndrome and

> diazapam was the

> treatment of choice.

>

> I went to a Dr. Dewey at Southwest Schl of Medicine,

> Univ of Texas,

> first diagnosis, who said Parkinson, heavy doses of

> Mirapex, after 3

> months and worse said not Parkinson.

> First diagnosis from local neuro: Isolated Gait

> Ignition Failure (it

> really exists, he gave me a copy out of his

> textbook). Second:

> Parkinson, Third: Stiffman Syndrom (for yr and half

> by the best Baylor

> in Houston had), Fourth: Primary Lateral Sclerosis

> or Multiple System

> Atrophy, Fifth: PLS. I hope that is that, but

> going to have my primary

> dr. check for Lyme's Disease.

>

> Seems like some symptons come then leave never to

> return again and

> things kinda settle down.

>

> Stay on board, there are people here that can answer

> just about any

> thing.

>

> From the Lone Star State,

>

> Arlene

>

>

__________________________________________________

[Guest guest]

Hi ,

Thanks for the suggestion about yoga. I do some

stretches on my own, but have not had physical therapy

yet. I admire your gumption - you seem to be moving

forward and handling this PLS very well. I know it

can't be easy with young kids.

My husband is from Wilmington, NC and went to Wake

Forest in Winston-Salem. Our younger son is still at

Wake and we were in the area for several days around

Christmas. It is beautiful there but I do love the

wide open spaces in Texas (my home state).

Thanks for replying.

Mollie

--- -Witt srwitt@...> wrote:

> Hi Mollie,

>

> i am new to the group too and posted for the first

> time last wk. i was just diagnosed in december and

> my

> speech is also severely affected as is

> mobility/walking (AFOs, cane, and sometimes walker).

> i'm 38 w/2 kids.

>

> one thing that has helped me is back in the spring i

> started working w/a yoga teacher who has some

> experience w/folks w/physical challenges. we do

> mostly

> very low-key yoga poses/stretches on the floor and i

> am able to do a series of poses on my own as well.

> we

> even do some balance poses against the wall. the

> yoga

> breathing exercises help as well. my neurologist,

> who

> is at duke, and the PT there both said they thought

> yoga was one of most effective exercises/relaxation

> approaches for people w/chronic neuro issues. i wish

> there was yoga for my speech but we haven't found

> that

> yet .

>

> this may not work for everyone but the yoga has

> definitely been helpful both mentally and

> physically,

> esp. in working with stiffness/spasms/pain.

>

> anyway, i sympathize w/you very much. i'm also

> taking

> baclofen (40 mg/day), which has really, REALLY

> helped,

> as well as zoloft, which has helped a lot too. like

> you, i've been having a hard time dealing with this.

> i

> ran marathons before this all started in the spring

> of

> '04. but i feel like i'm making progress and like

> this

> forum is a God-send.

>

> sarah

> --- mollieinman mollieinman@...> wrote:

>

> > Hi, I'm Mollie from Texas and I was diagnosed with

> > PLS in June and

> > confirmed in Oct. My daughter-in-law contacted

> your

> > group after we

> > all spent Thanksgiving together and she was

> > concerned about how my

> > family and I were handling the dx. Not very well,

> > I'm afraid.

> >

> > My first symptom was just one slurred word in May

> > 2004 and I thought

> > how funny I can't say that word. Within a month or

> > two I had my first

> > bout of " imbalance " - I later told a dr. it was

> like

> > my center of

> > gravity was off. Around that same time, while I

> was

> > on my 3 mile

> > daily walk, I noticed my left foot just didn't

> lift

> > up quite right,

> > but if I thought about it, I could make it work

> OK.

> > Since then,

> > things have just gone downhill, and it seems the

> > progression has sped

> > up in the last 6 months. Maybe that's because I

> quit

> > working in July

> > and didn't have to pretend everything was OK. I

> was

> > really tired.

> >

> > I've been reading your messages for a while now

> and

> > am amazed at the

> > positive attitudes you have, and how courageous

> you

> > are. I don't feel

> > that way at all. I am grateful, however, that I

> made

> > it to 55 yrs. in

> > really great health and I got to stay at home to

> > raise my kids. I

> > have a loving husband who is as baffled by this

> > disease as I am and

> > he is really struggling to accept it. He traveled

> a

> > lot as our sons

> > were growing up and I took care of everything -

> now

> > I can't even make

> > a phone call and be understood.

> >

> > I think one of the worst things is that my

> > sister-in-law died of ALS

> > about 5 years ago. How can 2 brothers marry 2

> > unrelated women from

> > different parts of the country and they both end

> up

> > with a rare MND?

> > We lived quite a distance from them and only saw

> > them yearly, but

> > watching the progression of ALS was terrible. My

> > sister-in-law was on

> > a ventilator for years and totally immobile as far

> > as I could tell,

> > and at the time I thought she was selfish to keep

> > hanging on and

> > putting her family through the horror of ALS. Now

> I

> > know she was the

> > most courageous person I've known.

> >

> > I go back to Dallas to see my neurologist week

> after

> > next and I'm

> > open to any questions I should ask. I'm on only

> one

> > med, 10 mg.

> > baclofen, which seems to help some if I've gotten

> > good rest and

> > feeling pretty well. If I'm tired it doesn't seem

> to

> > help at all. My

> > daughter-in-law, Hope, put together a binder with

> > lots of great

> > information in it and I am doing some speech and

> > stretching exercises

> > she included. I would appreciate any suggestions

> you

> > might have.

> >

> > Take good care,

> > Mollie

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hey Mollie,

that is so cool! several of my family members went to

wake forest, and my mother grew up there in

winston-salem. i went to davidson, which is down near

charlotte, and we live in raleigh now. i've only been

to austin, tx, but would love to see more of it.

also, i forgot to put one resource in re:yoga that

might be useful. there's a book i have used some

called " Recovery Yoga " by sam dworkis; you can get it

at amazon or your library may have it. mr dworkis

developed a severe form of MS in his mid-40s after

years as a globe-trotting yoga teacher and as a result

wrote this book for those struggling w/chronic illness

or injury. it's cool because he focuses on stretches

you can do sitting in a chair, leaning on a chair, as

well as some good breathing techniques.

bye mollie! i hope you have a good day.

sarah

--- Mollie Inman mollieinman@...> wrote:

> Hi ,

>

> Thanks for the suggestion about yoga. I do some

> stretches on my own, but have not had physical

> therapy

> yet. I admire your gumption - you seem to be moving

> forward and handling this PLS very well. I know it

> can't be easy with young kids.

>

> My husband is from Wilmington, NC and went to Wake

> Forest in Winston-Salem. Our younger son is still at

> Wake and we were in the area for several days around

> Christmas. It is beautiful there but I do love the

> wide open spaces in Texas (my home state).

>

> Thanks for replying.

> Mollie

>

> --- -Witt srwitt@...> wrote:

>

> > Hi Mollie,

> >

> > i am new to the group too and posted for the first

> > time last wk. i was just diagnosed in december and

> > my

> > speech is also severely affected as is

> > mobility/walking (AFOs, cane, and sometimes

> walker).

> > i'm 38 w/2 kids.

> >

> > one thing that has helped me is back in the spring

> i

> > started working w/a yoga teacher who has some

> > experience w/folks w/physical challenges. we do

> > mostly

> > very low-key yoga poses/stretches on the floor and

> i

> > am able to do a series of poses on my own as well.

> > we

> > even do some balance poses against the wall. the

> > yoga

> > breathing exercises help as well. my neurologist,

> > who

> > is at duke, and the PT there both said they

> thought

> > yoga was one of most effective

> exercises/relaxation

> > approaches for people w/chronic neuro issues. i

> wish

> > there was yoga for my speech but we haven't found

> > that

> > yet .

> >

> > this may not work for everyone but the yoga has

> > definitely been helpful both mentally and

> > physically,

> > esp. in working with stiffness/spasms/pain.

> >

> > anyway, i sympathize w/you very much. i'm also

> > taking

> > baclofen (40 mg/day), which has really, REALLY

> > helped,

> > as well as zoloft, which has helped a lot too.

> like

> > you, i've been having a hard time dealing with

> this.

> > i

> > ran marathons before this all started in the

> spring

> > of

> > '04. but i feel like i'm making progress and like

> > this

> > forum is a God-send.

> >

> > sarah

> > --- mollieinman mollieinman@...> wrote:

> >

> > > Hi, I'm Mollie from Texas and I was diagnosed

> with

> > > PLS in June and

> > > confirmed in Oct. My daughter-in-law contacted

> > your

> > > group after we

> > > all spent Thanksgiving together and she was

> > > concerned about how my

> > > family and I were handling the dx. Not very

> well,

> > > I'm afraid.

> > >

> > > My first symptom was just one slurred word in

> May

> > > 2004 and I thought

> > > how funny I can't say that word. Within a month

> or

> > > two I had my first

> > > bout of " imbalance " - I later told a dr. it was

> > like

> > > my center of

> > > gravity was off. Around that same time, while I

> > was

> > > on my 3 mile

> > > daily walk, I noticed my left foot just didn't

> > lift

> > > up quite right,

> > > but if I thought about it, I could make it work

> > OK.

> > > Since then,

> > > things have just gone downhill, and it seems the

> > > progression has sped

> > > up in the last 6 months. Maybe that's because I

> > quit

> > > working in July

> > > and didn't have to pretend everything was OK. I

> > was

> > > really tired.

> > >

> > > I've been reading your messages for a while now

> > and

> > > am amazed at the

> > > positive attitudes you have, and how courageous

> > you

> > > are. I don't feel

> > > that way at all. I am grateful, however, that I

> > made

> > > it to 55 yrs. in

> > > really great health and I got to stay at home to

> > > raise my kids. I

> > > have a loving husband who is as baffled by this

> > > disease as I am and

> > > he is really struggling to accept it. He

> traveled

> > a

> > > lot as our sons

> > > were growing up and I took care of everything -

> > now

> > > I can't even make

> > > a phone call and be understood.

> > >

> > > I think one of the worst things is that my

> > > sister-in-law died of ALS

> > > about 5 years ago. How can 2 brothers marry 2

> > > unrelated women from

> > > different parts of the country and they both end

> > up

> > > with a rare MND?

> > > We lived quite a distance from them and only saw

> > > them yearly, but

> > > watching the progression of ALS was terrible. My

> > > sister-in-law was on

> > > a ventilator for years and totally immobile as

> far

> > > as I could tell,

> > > and at the time I thought she was selfish to

> keep

> > > hanging on and

> > > putting her family through the horror of ALS.

> Now

> > I

> > > know she was the

> > > most courageous person I've known.

> > >

> > > I go back to Dallas to see my neurologist week

> > after

> > > next and I'm

> > > open to any questions I should ask. I'm on only

> > one

> > > med, 10 mg.

> > > baclofen, which seems to help some if I've

> gotten

> > > good rest and

> > > feeling pretty well. If I'm tired it doesn't

> seem

> > to

> > > help at all. My

> > > daughter-in-law, Hope, put together a binder

> with

> > > lots of great

> > > information in it and I am doing some speech and

> > > stretching exercises

> > > she included. I would appreciate any suggestions

> > you

> > > might have.

> > >

> > > Take good care,

> > > Mollie

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi! I joined a few months ago while reading the same

book. My daughter is 22 and struggling to get through

college and on with life. She was diagnosed a year

before, but we all really weren't ready to hear it

then. Now we are getting help and looking for the

rainbow or even the light at the end of the tunnel.

Is your daughter getting help or taking medication?

Keep in touch with this mailing list to meet wonderful

people who have been through lots and lots of terrible

stuff but are managing to keep their sanity. Quite a

few have grandchildren, like you, and are doing their

best to take care of themselves, their daughters, and

their grandchildren. Once the weekend is over, I'm

sure you'll be hearing from some of them.

Remember! You've got to take care of yourself first!

Your health and your well-being are as important as

anyone else's!

Best regards,

Deborah

--- bornonsat bornonsat@...> wrote:

> Hi there,

>

> I just found out about this group when reading the

> book " Stop Walking

> on Eggshells " . My daughter is 36 years old and has

> been diagnosed

> with BPD. She was in a verbally abusive marriage

> but left her husband

> about a year ago. Since then it has been awful. A

> custody battle over

> her 2 children is ongoing and has been quite

> stressful. Over the

> years it has been quite taxing and has cost me quite

> a bit finacially

> and emotionally. I see myself so often as I read

> through the book.

> Good to see a support group online.

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear Bomons

Is it your daughter who was the verbally abusive one in the marriage? How

is she with you and the children? Yes, many of us here have grandchildren we

are trying to protect from our daughters' poor life choices.

You will definitely find this group a strong support. I don't know what I

would have done without it.

Jean

[Guest guest]

In a message dated 1/28/2006 10:58:30 PM Eastern Standard Time,

bornonsat@... writes:

Good to see a support group online.

Hello there and welcome to our group. I take it your daughter doesn't live

w/you? Do you at least get to see your grands? I hope so, they need the

structure and support that you can provide. At least your daughter was smart

enough to get out of the bad relationship, and hopefully won't tend to get her

self

involved in another one. They do seem to seek out those types that are bad

for them. Hopefully you are maintaining a life for yourself, not enabling your

daughter, not letting her be co-dependent on you. I know it's difficult not

to run and rescue them from the situations they get themselves into, but hang

in there. She is an adult and I'm glad for you that you have found our site

and are educating yourself about this disorder.

DebbieL

[Guest guest]

,

Did you go through Kaiser? I am post op from Kaiser South San

Francisco...My surgery was on 4/20....Welcome to the group

Mike T

New Member

> Hello all,

>

> My name is . I live in Sacramento California. I'm post op

> laprascopic gastric bypass 10/17/06. I've currently lost 40 lbs to

> date. I'm very excited about joining the group. Looking forward to

> chatting, exchanging ideas and personal concerns with you.

[Guest guest]

Hi . Welcome to the group! Hugs, in Texas

" A. " wonderwoman3370@...> wrote: Hello all,

My name is . I live in Sacramento California. I'm post op

laprascopic gastric bypass 10/17/06. I've currently lost 40 lbs to

date. I'm very excited about joining the group. Looking forward to

chatting, exchanging ideas and personal concerns with you.

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

Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get

things done faster.

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

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

Hi and welcome to the group. I hope that you will find us fun and

informative. I hope that your weight loss here will be as successful as

many of ours has been and will be as life changing.

Lin

422-338-250

Lhsh@...

American by birth,

Saved by the grace of God.

New Member

1. Name: Bernard

2. City and state: Lake Worth, FL

3. Are you a Southern California resident? no

4. Would you like to be added to our in person luncheon guest list? no

3. Email address: heatherelectra@...

4. Obesity Help Profile name and/or OH URL: hbernard

5. Are you: Considering Surgery, Pre Op or Post Op: Post Op

6. Date of WLS: 12/7/2006

7. Surgeon’s Name: Wizman MD

8. Type of Surgery: bypass

9. Highest Pre Surgery Weight: 265

10. Insurance or self pay: Insurance

11. What is the name of your insurance company that covered your WLS:

United Health Care

12.Birthdate: 2/11

13.Occupation: computer programmer

14.Hobbies: beading, computer games, playing with my fur-family (4 dogs, 2

cats)

15.Anything you would like the other members to know about you?

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.432 / Virus Database: 268.15.24/592 - Release Date: 12/18/2006

1:45 PM

[Guest guest]

Yeah another !!!!! Welcome to the group!!!

Hugs!!

O.

>

>

>

> 1. Name: Bernard

>

>

>

> 2. City and state: Lake Worth, FL

>

>

>

> 3. Are you a Southern California resident? no

>

>

>

> 4. Would you like to be added to our in person luncheon guest

list? no

>

>

>

> 3. Email address: heatherelectra@...

>

>

>

> 4. Obesity Help Profile name and/or OH URL: hbernard

>

>

>

> 5. Are you: Considering Surgery, Pre Op or Post Op: Post Op

>

>

>

> 6. Date of WLS: 12/7/2006

>

>

>

> 7. Surgeon's Name: Wizman MD

>

>

>

> 8. Type of Surgery: bypass

>

>

>

> 9. Highest Pre Surgery Weight: 265

>

>

>

> 10. Insurance or self pay: Insurance

>

>

>

> 11. What is the name of your insurance company that covered your

WLS:

> United Health Care

>

>

>

> 12.Birthdate: 2/11

>

>

>

> 13.Occupation: computer programmer

>

>

>

> 14.Hobbies: beading, computer games, playing with my fur-family (4

dogs, 2

> cats)

>

>

>

> 15.Anything you would like the other members to know about you?

>

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.5.432 / Virus Database: 268.15.24/592 - Release Date:

12/18/2006

> 1:45 PM

>

>

>

>

[Guest guest]

Hmm. Two s at the same time? I think I rented a movie like

that once. NICE!

Mike in GR

> >

> >

> >

> > 1. Name: Bernard

> >

> >

> >

> > 2. City and state: Lake Worth, FL

> >

> >

> >

> > 3. Are you a Southern California resident? no

> >

> >

> >

> > 4. Would you like to be added to our in person luncheon guest

> list? no

> >

> >

> >

> > 3. Email address: heatherelectra@

> >

> >

> >

> > 4. Obesity Help Profile name and/or OH URL: hbernard

> >

> >

> >

> > 5. Are you: Considering Surgery, Pre Op or Post Op: Post Op

> >

> >

> >

> > 6. Date of WLS: 12/7/2006

> >

> >

> >

> > 7. Surgeon's Name: Wizman MD

> >

> >

> >

> > 8. Type of Surgery: bypass

> >

> >

> >

> > 9. Highest Pre Surgery Weight: 265

> >

> >

> >

> > 10. Insurance or self pay: Insurance

> >

> >

> >

> > 11. What is the name of your insurance company that covered your

> WLS:

> > United Health Care

> >

> >

> >

> > 12.Birthdate: 2/11

> >

> >

> >

> > 13.Occupation: computer programmer

> >

> >

> >

> > 14.Hobbies: beading, computer games, playing with my fur-family

(4

> dogs, 2

> > cats)

> >

> >

> >

> > 15.Anything you would like the other members to know about you?

> >

> >

> >

> >

> > --

> > No virus found in this outgoing message.

> > Checked by AVG Free Edition.

> > Version: 7.5.432 / Virus Database: 268.15.24/592 - Release Date:

> 12/18/2006

> > 1:45 PM

> >

> >

> >

> >

[Guest guest]

Hi . My son Luke is 2 1/2. He had Choanal Atresia and still

has a G-tube due to swallowing problems. He had kidney reflux for

his first year, but fortunately it resolved on it's own. He has some

kind of spot on his kidney but no one has ever been able to tell us

what it us, but his kidney function is good so I try not to worry

about it. Luke just had tubes put in his ears to relieve the fluid

and recurring ear infections. We are still unsure of his hearing as

well. He passed an ABR but I still have my doubts that his hearing

is " normal " . Luke is definitely more delayed in the area of gross

motor than your son. He is just now starting to pull himself up on

furniture.

I can totally relate about doctors only looking at your child in

sections. We have had the same problem. We just recently got Luke

into a program called U Special Kids. The program is for chronically

ill children to help coordinate their care and keep them at home and

out of the hospital as much as possible. He sees a pediatrician who

looks at the whole picture now and she also focuses a lot on treating

nutritional problems instead of meds for everything. Maybe there is

a program like that where you live? Luke had to be approved for it,

but that wasn't a problem. They also make sure that when your child

goes under anestesia for a procedure, that's when things like blood

draws are taken and the dental exams are done also. They try to do

what's in the best interest of your child instead of what's

convenient for doctors. I'll try to remember to ask my doctor next

time I talk to her if they know of any programs like this in

Florida.

Anyway, welcome to the group. You can check out Luke's website if

you want. It's http://www.caringbridge.org/mn/lukejoseph

and Luke

> Hello Everyone

>

> I have just joined this group. I live down in Florida on the West

> Coast side. My son, who just turned one was diagnosed with Charge

at 5

> months. He has fluid in ears and abnormalities of the cocolear. We

> are still in the process of finding what kind of hear impairment he

> has. I know he can hear but it is how he hears it. He has the

coaneal

> atrisia, g-tube, and a small kidney due to reflux. I apologize with

my

> spelling. We have recently started talikng with Dr Nurko and will

be

> visiting him soon. His gross motor skills are not to delayed. He

just

> started crawling and pulling him self up on furniture. He loves to

> walk with my assistance. My biggest battle with dealing with Charge

is

> the doctors are not fully aware of it. They are educating

themselves

> as I am. Also, trying to have a doctor help with coordinating his

> care. Everyone looks at him in sections, nobody looks at him as a

> whole person. That is truly frustrating. If anyone has any

> suggestions on how to make it easier, let me know

>

>

>

>

>

>

>

>

>

[Guest guest]

>

> ,

>

Welcome to the list - you will find some useful advice and info here and

always an understanding shoulder. I can't wait to hear more about your son

- what is his name?

Kennedy's Mom

www.chargesyndrome.info

.

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

heather welcom im wat we in here call a charger im 21 but in one month

exactly ill b 22 i dont have tha artresia but ive had cleft lip palate and

im fed thourgh a gtube ive got ear porbs and colabomas in the eyes they ears

just got checked today ive got a sencory neural plus bone conduction hearing

loss im in the mild to moderate range woth that but can hear quite good with

hearing aids ive been in and out of hosp many times for my tummy and other

stuff this group is great for anyone and everyone here as jeanie said the

first few years r the hardest but it can get easier im from aus hugs ellen

>

> >

> > ,

> >

>

> Welcome to the list - you will find some useful advice and info here and

> always an understanding shoulder. I can't wait to hear more about your son

> - what is his name?

>

>

> Kennedy's Mom

> www.chargesyndrome.info

>

> .

> >

> >

> >

>

> --

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

[Guest guest]

you need to have Aldosterone and Renin tested as well as saliva

cortilsl. The saliva testing you can order yourself from

www.canaryclub.org and the Aldfosteone & Renin your doctor can most

liekly order but if they won't go to our LINKS section at the mauin

website for this group and look under labs. The first oe will test both

but you have to call them to ask for the Renin testing. These have

everything to do with poitassium levels The Beta Blocker will lower your

thyroid levels further. I strongly urge you to find a doctor in or out

of insurance that will treat you wiht natural thyroid. Your body needs

it especaiall y pot thyroidectomy. (PS we don;t worry abotu typos here

as I am the WORST!)

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

[Guest guest]

Hi Phyllis.

My name is Sharon. I've had FMS for about 7 years and have had Juvenile

Rheumatoid Arthritis for about 18 years. I'm 29 and I've been on disability for

about 7 years. I applied and got on Social Security Disability for my JRA but

you can get on for FMS also. All you need is a good doctor to fill out the

paper work certifying you as qualifying for disability. I'd try to do it

yourself the first time then if you get denied try a lawyer. i did it by myself

and didn't have to pay the attorney fees. It only took me about 9 months to get

on.

You don't have had to have worked. It's called " Social Security Supplimental

Income " . You don't get as much as you would if you had worked but something is

better than nothing. And after I got on SSI they switched me over to a type of

disability called Adult Disabled Child. Since I have been disabled since befoe

my 22 birthday, I was able to file under my dad's social security and I was able

to get Medicare. Oh and on SSI you may qualify for Medicaid. If you are legally

married maybe not. Let me know. I know quite a few tricks to the trade so to

speak.

Please email me or IM me if you would like to talk.

Hope I've helped....Sharon.

new member

Hi everyone,

I am new to this group and was diagnosed with FMS 4 years ago.

However, the past 6 months have been the worst ever. My hips and

legs are in severe pain and anytime I hold my 11 month old nephew

(who is very tiny) my right arm ends up hurting severely for weeks.

I have also recently started having severe migraines that last up to

a week. It has not been fun. I also have 2 autistic boys and a

husband that is very unsupportive and not only unhelpful, but he

pretty much makes everything worse. My stress level is through the

roof. I went to see a new rheumatologist this week and he started

asking me about my childhood and my marriage and said I was depressed

and prescribed Trazidone. I asked about Lyrica and he pretty much

shook his head and said that only helps with the pain and wouldnt

prescrib it. He pretty much gave me nothing for the pain, just said

that if I get some sleep with the trazadone the pain will get

better. His resident suggested possibly water therapy but he shot

that down too saying try the trazadone first.

I was able to get a handicapp parking sticker, but can not apply for

disability. For the past 13 years I have been a stay at home mom,

doing odd jobs from home (in home daycare for most of the time and

selling avon). None of it comes close to helping with the bills

(especially with two autistic kids) but working outside the home is

impossible for me. The number one reason I am stuck in my marriage

is I have no way to support myself and the kids (even with support

from him).

I am mostly just looking for a supportive group to discuss and vent

with.

Phyllis

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