Jump to content
RemedySpot.com

Rate this topic


Guest guest

Recommended Posts

Guest guest

TJ,

Start writing down now how EDS affects every single aspect of you daily

life. From sleeping to waking moment in minute detail. For example, how hard

it is to wash, toilet, bathe, dress, do chores, read, sit stand,watch tv,

house bound, inability to drive or walk to a bus stop, It's all practically

impossible due to pain ,weakness, etc. No hobbies, ya can't do them. Discuss

who cooks or not ,very important. You use microwave stuff, someone else does

your grocery shopping, someone else picks up your pain medications. You need

to write quite a few pages no matter how hard this is, this is what will win

your case with the law I gave you. Good Luck and Hugs!

S.

Re:

>

>

> TJ,

> No you will be OK! You won't pass out! Just take deep breaths and think

of

> comforting thoughts. Take your time when answering questions, think

about

> each question for a minute or so, ask for the question to be repeated.

This

> helps you organize your thoughts and responses. I wish you the best with

the

> new medications. When is the SSI hearing?

> Hugs and Love,

> S.

>

>

> ---

> Outgoing mail is certified Virus Free With AVG.

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

> Version: 6.0.614 / Virus Database: 393 - Release Date: 3/5/2004

>

>

Link to comment
Share on other sites

Guest guest

Dear

Just to say thank you for your kind words. I am struggling to even get MRI

scans of my knees (or any other joint to be honest). The NHS have told me they

will not scan me to tell me where I have avn, they will simply replace the

joints as they collapse! This is not really good enough for me having just

spent so much money getting my hips sorted out. I saw my GP yesterday and he is

referring me back to my rheumatologist in the hope that he will at least

arrange an MRI of my left knee! The good news is that I got some stronger

painkillers yesterday!

At least my hips appear to be sorted out, for which I am so greatful!

Love Lucy

Mr Treacy Bilateral 20.08.03

Link to comment
Share on other sites

Guest guest

Dear

Just to say thank you for your kind words. I am struggling to even get MRI

scans of my knees (or any other joint to be honest). The NHS have told me they

will not scan me to tell me where I have avn, they will simply replace the

joints as they collapse! This is not really good enough for me having just

spent so much money getting my hips sorted out. I saw my GP yesterday and he is

referring me back to my rheumatologist in the hope that he will at least

arrange an MRI of my left knee! The good news is that I got some stronger

painkillers yesterday!

At least my hips appear to be sorted out, for which I am so greatful!

Love Lucy

Mr Treacy Bilateral 20.08.03

Link to comment
Share on other sites

Guest guest

Dear

Just to say thank you for your kind words. I am struggling to even get MRI

scans of my knees (or any other joint to be honest). The NHS have told me they

will not scan me to tell me where I have avn, they will simply replace the

joints as they collapse! This is not really good enough for me having just

spent so much money getting my hips sorted out. I saw my GP yesterday and he is

referring me back to my rheumatologist in the hope that he will at least

arrange an MRI of my left knee! The good news is that I got some stronger

painkillers yesterday!

At least my hips appear to be sorted out, for which I am so greatful!

Love Lucy

Mr Treacy Bilateral 20.08.03

Link to comment
Share on other sites

Guest guest

FAO Lucy

Lucy

You may be interested in the following.

I have a knee injury – motorcycle accident – which does not show on x-rays.

It was suggested that an MRI scan may show the damage there. The cheapest quote

for an MRI scan of my knee in the UK was £560.00 (6 slice segments). The

alternative I found was to have the MRI scan done in Trieste, Italy, for

€180.00 (converted to GB pounds approx. £120.00). The return flight

(including airport & passenger taxes) from Stansted using air cost me just

under £24.00 (I’ve just checked on their web site and there are numerous

flights in April and May costing £0.49 in each direction, plus taxes – so you

can go there and back for under £25.00). You can do it all in two days – it

could be done the same day but for the fact that air turn the plane round in

25 minutes and fly it back to Stansted. The booking system at the MRI centre is

very smooth and reliable. You will be processed on the dot – at least that

was my experience – and all will be over inside 2 hours including a written

report (in Italian). You will get more than 24 ‘slices’ / segments of your

knee. The same price and procedure apply for any joint to be MRI scanned.

Contact me directly if you need more information (telephone no, address etc.).

By the way, there is a free shuttle service from the airport in Trieste to the

city centre which happens to end its journey across the road from the MRI

centre. Within 500 m of the centre there are at least 3 hotels. You can rent a

car at the airport for approx. £20.00 a day at the Trieste airport.

I hope you’ll find this useful.

Regards

Dan

* +44 (0)7974 981-407

* +44 (0)20 8501-2573

@ dan.milosevic@...

_____

From: hollandlucy@...

Sent: 26 March 2004 08:03

To: surfacehippy

Subject: Re:

Dear

Just to say thank you for your kind words. I am struggling to even get MRI

scans of my knees (or any other joint to be honest). The NHS have told me they

will not scan me to tell me where I have avn, they will simply replace the

joints as they collapse! This is not really good enough for me having just

spent so much money getting my hips sorted out. I saw my GP yesterday and he is

referring me back to my rheumatologist in the hope that he will at least arrange

an MRI of my left knee! The good news is that I got some stronger painkillers

yesterday!

At least my hips appear to be sorted out, for which I am so greatful!

Love Lucy

Mr Treacy Bilateral 20.08.03

Link to comment
Share on other sites

  • 3 weeks later...
Guest guest

AJ was born 3/7/01 with bilateral clubfeet and a onian

translocation of the 13th and 14th chromosome which he inherited from

me. At six months of age I noted that AJ was not reaching his

milestones. The peds kept telling me it was because of the

clubfeet. I have three other kids and knew better. By 9 months AJ

was still not rolling over or lifting his head. I went against

everyone who kept telling me he would be OK, including my husband and

contacted EI to have him evaluated. They determined AJ needed PT and

ST. Eventually we added OT and a teacher. I then began taking AJ to

doctor's to try to find out what was wrong. We have been to see 5

neurologists, a developmental ped, psychologist, genetics, gastro,

opthamology, and more. At age 3 AJ has just started to walk with use

of a Rifton Pacer Gait Trainer (walker), can eat by himself (fingers

only)and drink from a cup. He can not talk and does not have the

motor skills for sign language. He can not stack blocks or put

shapes in a shape sorter. He can put objects in a container, loves

to look at books and push buttons, understands cause and effect and

absolutely loves music. He just started preschool and seems to be

enjoying himself. Medically he has hypotonia, mild PVL and some

areas around his brain that aren't totally developed but according to

every neurologist we have seen not significant enough to be causing

his issues. He has had to many test for me to list them all here but

so far everything has come back normal. This Friday we are going to

see endocrinology to explore hormone levels as AJ is below the 5th

percentile in both height and weight. Monday we are going to Dupont

for an assisstive tecchnology eval to see if they can find something

that AJ can use to help him communicate. Tomorrow he is scheduled for

eye surgery to straighten his left eye which points in.

Feel free to e-mail me directly and I would be happy to discuss more

about AJ's issues and answer any questions that might help you with

your daughter.

Take care.

Link to comment
Share on other sites

Guest guest

AJ was born 3/7/01 with bilateral clubfeet and a onian

translocation of the 13th and 14th chromosome which he inherited from

me. At six months of age I noted that AJ was not reaching his

milestones. The peds kept telling me it was because of the

clubfeet. I have three other kids and knew better. By 9 months AJ

was still not rolling over or lifting his head. I went against

everyone who kept telling me he would be OK, including my husband and

contacted EI to have him evaluated. They determined AJ needed PT and

ST. Eventually we added OT and a teacher. I then began taking AJ to

doctor's to try to find out what was wrong. We have been to see 5

neurologists, a developmental ped, psychologist, genetics, gastro,

opthamology, and more. At age 3 AJ has just started to walk with use

of a Rifton Pacer Gait Trainer (walker), can eat by himself (fingers

only)and drink from a cup. He can not talk and does not have the

motor skills for sign language. He can not stack blocks or put

shapes in a shape sorter. He can put objects in a container, loves

to look at books and push buttons, understands cause and effect and

absolutely loves music. He just started preschool and seems to be

enjoying himself. Medically he has hypotonia, mild PVL and some

areas around his brain that aren't totally developed but according to

every neurologist we have seen not significant enough to be causing

his issues. He has had to many test for me to list them all here but

so far everything has come back normal. This Friday we are going to

see endocrinology to explore hormone levels as AJ is below the 5th

percentile in both height and weight. Monday we are going to Dupont

for an assisstive tecchnology eval to see if they can find something

that AJ can use to help him communicate. Tomorrow he is scheduled for

eye surgery to straighten his left eye which points in.

Feel free to e-mail me directly and I would be happy to discuss more

about AJ's issues and answer any questions that might help you with

your daughter.

Take care.

Link to comment
Share on other sites

Guest guest

You can take interstate 10 that's the speedy way or you can go down 90 which takes you through all the small towns. I prefer I 10. Oh yeah, then there's the road that goes along the coast......never been that way but I'm sure it's the most scenic. I don't know about Pensacola being beautiful though. The city is kinda old looking to me but I'm sure the beach is nice. I have never gone to the beach there......we always go to Destin......it's nice there too. The sand is pure white made mostly of quartz.

Karol

Karol

I hear Pensacola is beautiful. Elton always talked about some road going into Pensacola. I'll have to ask him the name of it.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

You can take interstate 10 that's the speedy way or you can go down 90 which takes you through all the small towns. I prefer I 10. Oh yeah, then there's the road that goes along the coast......never been that way but I'm sure it's the most scenic. I don't know about Pensacola being beautiful though. The city is kinda old looking to me but I'm sure the beach is nice. I have never gone to the beach there......we always go to Destin......it's nice there too. The sand is pure white made mostly of quartz.

Karol

Karol

I hear Pensacola is beautiful. Elton always talked about some road going into Pensacola. I'll have to ask him the name of it.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

Hey .......what do you do for a living?

I have seen those lights you are talking about behind you. My husband isn't as lucky as I am. He gets the tickets. lol

This was not funny. Mac was taking me to the emergency room one afternoon.....he was traveling kind of fast and all of a sudden FHP pulls up behind us. We stopped and hubby told the FHP we were on the way to the ER so he said he would follow us . When we got there I went inside and Mac talked to the cop. We had an Eclipse at the time and one just like ours was reported stolen would you believe.....that's why he pulled us over. Hard to believe since Mac must have been doing 80 in a 50 mph zone.

Karol

Deanna

I had a trooper pass me when I was doing 85 on the thruway. I was driving the state van (no clients!!) and almost shit when I saw him coming up behind me! Don't need to loose my job!

Link to comment
Share on other sites

Guest guest

Yeah......problem is they don't know when to stop!

Karol

Karol

I know he said they were just starting to build up the area when he left.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

Yeah......problem is they don't know when to stop!

Karol

Karol

I know he said they were just starting to build up the area when he left.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

Yeah......problem is they don't know when to stop!

Karol

Karol

I know he said they were just starting to build up the area when he left.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

That is so sad. These people need someone to care about them. Are there many people there in the home?

Karol

Karol

Some of the guys at the house I work have no family at all. One has a dad who doesn't want any contact at all with him. Just wants to be notified when he dies. A couple have family that are there all the time. But for the most part, they have nobody who wants to be bothered with them.

Link to comment
Share on other sites

Guest guest

That is so sad. These people need someone to care about them. Are there many people there in the home?

Karol

Karol

Some of the guys at the house I work have no family at all. One has a dad who doesn't want any contact at all with him. Just wants to be notified when he dies. A couple have family that are there all the time. But for the most part, they have nobody who wants to be bothered with them.

Link to comment
Share on other sites

Guest guest

That is so sad. These people need someone to care about them. Are there many people there in the home?

Karol

Karol

Some of the guys at the house I work have no family at all. One has a dad who doesn't want any contact at all with him. Just wants to be notified when he dies. A couple have family that are there all the time. But for the most part, they have nobody who wants to be bothered with them.

Link to comment
Share on other sites

Guest guest

Betty,

Cardiomyopathy is an enlargement of the heart. I do not believe this would

lead to the tear in his aorta. But it would be best to ask a physician this.

Best Wishes!

S.

> Hi all

> I have another question for everyone. I am in the process of getting all

of my son's medical records. I have just recieved & reviewed records from

the pediatrician. Danny was on Ritalin first and then changed to Dexedrine

(10mg) during his school days. He was probably on it for about 3 and a half

years. In his records it stated that cardiomyopathy can occur while taking

this.My question is could this have made his blood vessels weaker which in

turn lead to his aortic tear. I know we have the EDS IV diagnosis but I do

want to make sure that nothing was overlooked.

> Thanks again. Any advice, comments would be appreciated.

> Betty

>

>

>

Link to comment
Share on other sites

Guest guest

Betty,

Cardiomyopathy is an enlargement of the heart. I do not believe this would

lead to the tear in his aorta. But it would be best to ask a physician this.

Best Wishes!

S.

> Hi all

> I have another question for everyone. I am in the process of getting all

of my son's medical records. I have just recieved & reviewed records from

the pediatrician. Danny was on Ritalin first and then changed to Dexedrine

(10mg) during his school days. He was probably on it for about 3 and a half

years. In his records it stated that cardiomyopathy can occur while taking

this.My question is could this have made his blood vessels weaker which in

turn lead to his aortic tear. I know we have the EDS IV diagnosis but I do

want to make sure that nothing was overlooked.

> Thanks again. Any advice, comments would be appreciated.

> Betty

>

>

>

Link to comment
Share on other sites

Guest guest

Please keep us posted on your tests. I hope your kidneys improve with the lowered methotrexate but I am real worried about your lungs. Anything they can do?

Mojo

Barb

The dr called last night and I have to go in thursday morning to go over my test results. That's my pcp. And I know the rhuemy said he will be calling me about them too. I think I forgot to tell you that they have decreased the methotrexate as that leaves through the kidneys. I still haven't found the thing they want me to get for my elbow. It's called a silopos heel/elbow slipover. It's gel filled. You can't buy that on the puter, they do have some that you can, so they gave me the number to a place in Rochester and they don't have them. They have other silopos items, but not that one. They tried to sell me a cotton one, but I'd best stick to the one the dr said. I have to check on my refrerral, that hadn't been done when I checked yesterday.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

Please keep us posted on your tests. I hope your kidneys improve with the lowered methotrexate but I am real worried about your lungs. Anything they can do?

Mojo

Barb

The dr called last night and I have to go in thursday morning to go over my test results. That's my pcp. And I know the rhuemy said he will be calling me about them too. I think I forgot to tell you that they have decreased the methotrexate as that leaves through the kidneys. I still haven't found the thing they want me to get for my elbow. It's called a silopos heel/elbow slipover. It's gel filled. You can't buy that on the puter, they do have some that you can, so they gave me the number to a place in Rochester and they don't have them. They have other silopos items, but not that one. They tried to sell me a cotton one, but I'd best stick to the one the dr said. I have to check on my refrerral, that hadn't been done when I checked yesterday.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Link to comment
Share on other sites

Guest guest

Hi,

This is very sad. My kids have had to deal with this. First, a good friend of

both my daughters died from an AVM. Just a week or so ago, a 13 year old boy

from thier school died in a car accident.

Last year, a boy from their school commited suicide. His father was abusive,

and apparently locked him in a shed. The boy killed hisself in the shed.

It was devistating to everyone.

They have handled this ok, except for their good friend, 's, death. She

lay in a coma for a week before she died. So, they had a little time to get

used to it. But, when the call came, my was so devistated, she had to be

medicated. I had 7 kids at my house that day for a vigil like thing. They all

started hyperventilating, and feeding off each other. It was almost like mass

hysteria. was the worst. She has anxiety anyway, and it was just

horrible.

I found I couldn't do anything but just be there. Most of the kid's parents

worked, so the kids would come to my house just to be around people. I just fed

them, and didn't do much talking at all. Just let them talk when they felt like

it.

Anything they did was fine. My got a box of " Sammi " stuff together, and

it still sits on top of her dresser. Pictures, and stuff Sammy gave her. Even

an old pair of pajama pants.

I get very sad every time I go into 's room and look at it.

After the funeral, everyone seemed to get better day by day.

Sammi's picture has a permanent place on our refridgerator. I gotta get that

into a frame.

It was, and still is, the hardest thing for my kids to deal with. is

best friends with Sammi's sister, and we see her and her mom all the time. Her

mom will never be the same. She can't even talk without crying. It's been a

year and 4 months.

I don't think we'll ever get over it.

Hugs,

Link to comment
Share on other sites

Guest guest

C., How are YOU this fine day? I couldn't sleep much last night, so am up early this a.m.

Don't have to get the boys up for school for another hour, yet. Nice and quiet, and the air is much

cooler this morning. I can't believe we have 90+ temps in April this year...and then it swings down to

the 30's at night and we get hail. Not predictable at all lately. LOL

Hope you are doing ok. I go in Friday morning for an ultrasound of my gall bladder area. I really don't

think that is what is wrong, but I'll humor the docs on this one. LOL You take care, and keep on a-goin', as the late Hepburn used to say. Love and hugs, MM

Link to comment
Share on other sites

Guest guest

Hey, you do what you gotta do! Sometimes you just have to eat something along with antibiotics. You eating any yogurt to keep the good bacteria up in your system?

Karol

Karol

Hi! Yes I got them, thank you, I was all out! I'm not feeling too bad this morning. I've found if I eat when I take the antibiotic the dr gave me I don't get sick. Only thing is your not suppose to eat 2 hours before or 2 hours after. But it beats getting sick.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

Link to comment
Share on other sites

Guest guest

Well, good luck to you. Hope your test today are better than the ones before. Hope you've been drinking a lot of water.

Mojo

Mojo

Yea, I have to be there at 10:20 and I'll ask for a copy of them so I don't forget them. I looked at my chart when I went to the rhuemy's last week but after looking at all of them I forgot what it was. I remember there was one number over the other one and I checked the last two times they did it, but then I got to reading other stuff and forgot what the numbers were. So today I will ask for a copy!

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...