RE: I'm a newbie

February 4, 2004

Welcome Michele.

I am sorry you are having a hard time. I am still waiting for the

official diagnosis. In the meamn time we treat symptoms as best we

can, which is no different than if I had a positive Dx. Hang in

there. People here are great. Tell Donna hello and we miss her.

Margot

> Hello. Donna (twhysasnys) is a real life friend and told me

> about this group. He is my story (in as short a space as I can

make

> it) ...

>

> My name is Michele. I just turned 25 on the 27th of January. I

am

> single, and live alone in southwestern Pennsylavania. I was

> determined permanently disabled back in 1998. I have been trying

to

> finish college off and on for the past several years, and plan to

try

> going back full-time this fall.

>

> I was told in the middle of December that I have some kind of

muscle

> or neurological disease. The doctor would not give me a diagnosis

> until tests are run, but said in his education opinion, he

believes

> it is MS. This was 2 days before I left for New Mexico to visit

with

> my mother. I am still waiting for them to call me back with test

> dates.

>

> My mother was diagnosed with MS ... 23? years ago. I have no

> memories of my mother without MS. So I grew up knowing what is

was,

> seeing her go through exacerbations, etc. My mother and I had a

long

> talk while I was down there about my symptoms, what tests would be

> run, etc. She also believes it is MS, but admits she is not a

> doctor, and cannot make a diagnosis. None of that helped. I am

> having a VERY hard time coping with my symptoms, and an even

harder

> time coping with the fact I might have MS. I have a lot of other

> health problems, and this was just kinda the icing on the cake.

>

> Anyways, that is my brief intro. She is still trying to get

things

> settled with the trailor. She also said ... " Just tell everybody

that

> I said Hello.. hope they are all doing okay.. and that I'll be

back

> in touch as soon as I get some time to catch my breath and collect

my

> thoughts... "

February 4, 2004

I've been falling off and on for 3 or more years. The rest of the

symptoms started showing up, and I started falling more, in the last

6 months. I was determined disabled in 1998 based on my knee (I need

total knee replacement) and PTSD/depression.

Sharon Marsden <wobbletowalk@y...> wrote:

> Michele:

>

> How long have you been having these problems? You said you were

disabled since 1988. What led to that?

>

> It was really hard for me to use a walker or cane in the

beginning. It's not easy. In my small community I constantly saw

people I knew and I just couldn't deal with the questions. It took

awhile before I could tell people what was going on, you know?

>

> hugs)

> Sharon

February 5, 2004

MICHELE HI AND WELCOME

I THINK I WOULD CALL THE DR'S OFFICE AND ASK IF THEY HAVE GOTTEN YOUR APPOINTMENTS SET UP YET .

WHEN I AM FALLING A LOT I TURN MY RIGHT FOOT OUT TO THE RIGHT SOME FOR BETTER BALANCE AND I MAKE SURE MY FOOT IS DOWN AND MY KNEE IS STRAIGHT BEFORE I PICK UP THE OTHER FOOT. NO IT DOES NOT KEEP ME UP ALL THE TIME BECAUSE THEY JUST GIVE WAY SOMETIMES BUT IT HELPS AND I DO NOT FALL AS OFTEN

I AM LOOKING FORWARD TO GETTING TO KNOW YOU.

HAPPINESS AND BUTTERFLIES

LYNN

paciencia96 wrote:

I will be sure to tell her the next time I talk to her. :)The only tests the doctor specifically brought up were blood work (which I have had done, waiting for the results), MRI and muscle biopsy. I fall several times a week, sometimes several times in a day. I have been given forearm crutches and a walker to use, but have a hard time admitting I need to use either one. I have short-term memory loss, poor concentration, and at times, trouble using my hands (I will go to grab a drink, and think I have it, but can't feel it or when I go to pick it up, I drop it). I also get this horrible numb/burning pain in my left leg/side, usually following that my hands go numb. Sharon Marsden <wobbletowalk@y...> wrote:> Hi Michele:> > I'm glad you joined us! And please

tell Donna hi for me. > > What tests is the doctor planning on doing? I hope you hear from the doctor's office soon with the test dates. How are you doing? What kind of symptoms have you had to bring you to this point? > > hugs)> Sharon

February 5, 2004

I could have sworn I wrote a reply to you yesterday. Oh well.

Welcome Michele. I am glad you found us. The people here are

fantastic! I have learned so much. I am in the process of being

diagnosed. I have started physical therapy for my balance. It is

going quite well. I am married with 4 children.

Say hello to Donna.

Margot

> Hello. Donna (twhysasnys) is a real life friend and told me

> about this group. He is my story (in as short a space as I can

make

> it) ...

>

> My name is Michele. I just turned 25 on the 27th of January. I

am

> single, and live alone in southwestern Pennsylavania. I was

> determined permanently disabled back in 1998. I have been trying

to

> finish college off and on for the past several years, and plan to

try

> going back full-time this fall.

>

> I was told in the middle of December that I have some kind of

muscle

> or neurological disease. The doctor would not give me a diagnosis

> until tests are run, but said in his education opinion, he

believes

> it is MS. This was 2 days before I left for New Mexico to visit

with

> my mother. I am still waiting for them to call me back with test

> dates.

>

> My mother was diagnosed with MS ... 23? years ago. I have no

> memories of my mother without MS. So I grew up knowing what is

was,

> seeing her go through exacerbations, etc. My mother and I had a

long

> talk while I was down there about my symptoms, what tests would be

> run, etc. She also believes it is MS, but admits she is not a

> doctor, and cannot make a diagnosis. None of that helped. I am

> having a VERY hard time coping with my symptoms, and an even

harder

> time coping with the fact I might have MS. I have a lot of other

> health problems, and this was just kinda the icing on the cake.

>

> Anyways, that is my brief intro. She is still trying to get

things

> settled with the trailor. She also said ... " Just tell everybody

that

> I said Hello.. hope they are all doing okay.. and that I'll be

back

> in touch as soon as I get some time to catch my breath and collect

my

> thoughts... "

February 5, 2004

Hi Michele,

I have been diagnosed with ms since 1984. Ms is surely a problem at times but these times do pass. There are now a lot of things that you can do to help yourself. Ms is a very manageable circumstance. Go to www.copingand prevailing.com If you cannot afford to pay for the book send me your mailing address andI will send it to you.

Regards,

Tom

February 5, 2004

I'm too lazy to make several different posts, so here we go ...

@Margot: Don't feel too bad, I had to scroll up and look myself

@Tom: Thanks for the link. I will go look shortly, and let you

know.

@: As it stands right now, I am aiming for duel Bachelor

degrees. One in Special Education (w/ teaching certification) and

the other in (Child) Psychology. I have a lot of experience in the

field of Special Education, just not the degree. In fact, I was

woking as a direct care staff in a group-home for adults with mental

retardation and also pretty much raising (on my own) a boy who had

severe MR and autisim when I became disabled.

As for my mom being a help - she is, but to a small degree. My

mother and I are not close, and we never really have been. She is

now trying, but she just does not know how to be a " mom " ... she has

the " mother " part down pat. I am trying to be positive, but it is

hard. All my memories of childhood are of watching my mom fall down

the steps; going down to wake her up in the morning, and watching her

pull herself to the bathroom on her elbows, because her legs would

not work; going to visit her in the hospital, and she couldn't even

talk to me because her throat was swollen shut; giving her daily

injections and watching huge bruises spread across her legs, etc. I

know there have been a LOT of advancements sinc my childhood, and

that there continues to be every day. But as of now, I am still

struggling to get past the horrors of my childhood, and see that.

February 5, 2004

Welcome Donna!

Shirley

-- I'm a newbie

Hello. Donna (twhysasnys) is a real life friend and told me about this group. He is my story (in as short a space as I can make it) ...My name is Michele. I just turned 25 on the 27th of January. I am single, and live alone in southwestern Pennsylavania. I was determined permanently disabled back in 1998. I have been trying to finish college off and on for the past several years, and plan to try going back full-time this fall. I was told in the middle of December that I have some kind of muscle or neurological disease. The doctor would not give me a diagnosis until tests are run, but said in his education opinion, he believes it is MS. This was 2 days before I left for New Mexico to visit with my mother. I am still waiting for them to call me back with test dates.My mother was diagnosed with MS ... 23? years ago. I have no memories of my mother without MS. So I grew up knowing what is was, seeing her go through exacerbations, etc. My mother and I had a long talk while I was down there about my symptoms, what tests would be run, etc. She also believes it is MS, but admits she is not a doctor, and cannot make a diagnosis. None of that helped. I am having a VERY hard time coping with my symptoms, and an even harder time coping with the fact I might have MS. I have a lot of other health problems, and this was just kinda the icing on the cake.Anyways, that is my brief intro. She is still trying to get things settled with the trailor. She also said ... "Just tell everybody that I said Hello.. hope they are all doing okay.. and that I'll be back in touch as soon as I get some time to catch my breath and collect my thoughts..."

October 5, 2007

Hi Debbie and welcome to the group. I am relatively new myself and also

have been having problems getting an actual diagnosis. I do have CRPS

but I was also diagnosed with fibromyalgia from a rheumatologist. My

neurologist and pain doctor disagree amongst themselves. The pain

doctor says yes I could have fibromyalgia OR I could be in the early

stages of rheumatoid arthritis (although the rheumatologist was almost

certain I didn’t have that). The neurologist thinks that the

rheumatologist didn’t give enough information and says my visit to him

was useless. So who knows. I just saw my primary doctor yesterday and

she agrees with the fibromyalgia diagnosis. This is very frustrating so

I know what you are going through (as do most that are on here)

This is a great place for you to vent because others in this group DO

know how you feel. I also have family who are worried about me BUT

don’t understand what I am going through. They can’t see a “wound” or

broken leg or anything else so it’s hard for them to comprehend that

something is wrong when I look normal. But I certainly don’t feel

normal.

Hang in there and welcome!

I'm a newbie

Hi all.

I'm Debbie. I'd like to tell you what's wrong with me (outside of the

pain of course), but unfortunately, I've yet to find a doctor that can

clue me in. Been misdiagnosed several times. The visit yesterday with

the neurologist just threw me into such a downward spiral, I decided to

take a look and see if there were any folks out there that could feel

my pain. No pun intended. Most of my friends and family don't

understand or think it's all in my head. I wish I could say it was all

in my head, but the current MRI shows everything's functioning fine.

LOL At least there's one part of me that works right!

Um, that's about all I have. Just wanted to say hi and such.

D.

October 5, 2007

Do you mind if I ask how you are treating your Fibro? Thanks, Penni