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jotted this down:

> A couple of things I've tried to find info on with no luck are

> meditation and autism and addiction and autism. I've been sober 12

> years in AA ...

My also-autistic partner is also an alcoholic, and has been abstinent for 4

months (with 2-3 months of not binge-drinking before then). He runs a

discussion/support list for autistics with substance addictions:

http://groups.yahoo.com/group/AutismSubstanceAbuse/

I'd comment more -- I've learned a lot about the topic out of sheer necessity --

but I don't want to infringe on his privacy, especially not on this topic.

DeGraf ~*~ http://www.sonic.net/mustang/moggy

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  • 3 months later...
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> I just joined this group a couple of days ago

> My symptoms vary from day to day.

Do I

> also need to give up my decaffeinated coffee?

Hi Diane,

Welcome to the group! Admittedly, there is a lot to weed through.

You can read my story in detail at

http://www.mercurypoisoned.com/janie's_story.html . Following is a

short excerpt:

" My symptoms also varied and fluctuated over the years but included

hand tremors, balancing problems, trouble walking, legs felt very

heavy, knees buckling, frequent falling, leg muscle spasms, loss of

appetite, recurring nausea, severe constipation, incontinence--both

bladder and bowel, chronic bladder and kidney infections, chronic

fatigue, pain in hands, stinging and burning/electric shock

sensation in my feet and legs, severe depression, mood swings,

temporary partial paralysis in legs, short term memory loss, loss of

concentration, confusion, slurred speech, difficulty in making even

simple decisions. "

Before going the alternative route, I was taking about 12-14 Rx's.

After amalgam removal I was able to quit taking all Rx meds. I did

not realize until then just how drugged up I was! On trips to visit

family in other cities I would have to lie down for a while and take

a nap as soon as I got there. Then I would be wiped out for days

after returning. Thankfully, that no longer happens.

What kind of pain do you feel? If it is like mine, a stinging and

burning/electric shock sensation, I totally sympathize with you. At

its worst now, my pain is far better than it used to be at its

best! The best thing that I found to help is soaking my feet and/or

legs in ice water, but you must be careful not to use too many ice

cubes. I almost gave myself frostbite one time.

Sorry to rain on your parade, but if at all possible, it would be

good to give up your decaf coffee. Here's an excerpt from Dr. Hulda

's book " Cure for All Diseases " which can be read online at

http://www.royalrife.com/cure.html:

" Stop drinking tea and cocoa because they contain oxalic acid. Stop

drinking coffee, decafs, fruit juice [store-bought] and soda pop

because they are contaminated with solvents. All of these must be

detoxified by your body and eliminated by your kidneys. We should

spare the kidneys these extra tasks when we wish them to clean up

heel spur deposits. You must first dissolve the deposits, then help

the kidneys eliminate them.

" To dissolve them, you alkalinize your body's pH, watching over it

carefully with pH paper or Nitrazine paper. To help kidneys

eliminate them, use the Kidney Cleanse and drink lots of water. Only

water, not a beverage, helps the kidneys to eliminate. "

While reading this book online, you can do a search for " decaf " and

find what all Dr. and patient testimonials say about it. It

further states that " There are solvents in decaffeinated and other

powdered mixes for beverages. "

Again welcome to the group. I commend you on your decision to want

to research alternatives to use in order to fight your MS and other

problems.

Take care and God bless you.

Janie

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  • 1 year later...
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Hi Laurie

Unfortunately, when I was born (in the dinosaur ages) they didn't know

anything about SB.

The mark on my back was a " birthmark " and the leg pain as I was growing was

" growing pains " . I didn't find out until I was 14 that I had SB. I never had

any surgery. I have had two healthy children and have lived a normal life

outside of one dead leg and leg pain.

Now that I'm getting into " riper years " , pain is starting in my back, and

it's stopping me from living my " life as usual " . Before it gets in my way any

more, I want to check out what the future is going to hold.

I got the name of a Pediatric Neurosurgeon who is willing to see me Aug 24th

at NYU in NYC. I will find out more about the surgery for a tethered

cord...and more importantly, why it would have to be repeated.

I will pass on any information.

Ann

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In a message dated 8/4/2005 6:56:24 PM Eastern Standard Time,

laurie.maddux@... writes:

I thought once the cord was released we would be " done " but

I just saw a post that said something like a cord can become tethered

again?

Welcome Laurie. My son is five also, and he had his cord released at

four months of age. He is doing well now, but when he had large growth

spurts in the past, he has shown signs of retethering (leg fatigue, buckling,

pains, tingling, back tingling) but thankfully they always went away and for

the

past year or so he hasn't shown any other signs.

What kind of tether did your daughter have? The fatty filum kind, where the

base of the cord was fatty, thickened or otherwise held down so it couldn't

move freely? If so, this kind of tether rarely retethers, although there is

a less than ten percent chance it could. This is the kind my son has. The

surgery is easier and less invasive.

The other kind I usually see in children is the lipomyelomeningocele (LMC),

in which the spine bones are actually open and a fatty lipoma extends from

underneath the skin and all the way down into the spinal cord. It's kind of

like spina bifida only with the skin over top closed up instead of open, and a

lump of fat in place of the opening. This kind of tether has a higher rate

of retethering due to the much more invasive surgery and larger defect, often

involving grafts to cover the spinal cord, and more scar tissue. I've heard

there is about a 30% chance of retethering.

The symptoms of retethering are the same for both kinds though (usually

weakness, tingling, or pain in lower limbs or back, bladder or bowel changes,

foot or leg orthopedic changes) and I always keep an eye on these for early

signs of problems. I've only known two or three people with fatty filums to

retether in childhood, but I figure better safe than sorry, especially since my

son has other issues ongoing.

Connie

Mom to Sara 13, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, mild long segment levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4.5cm

length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile

ever)

conni60640@..., _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

Support the VACTERLS conference, shop online at iGive at more than 500

stores, like Lands End, & Noble and Target...LL Bean, Sears and Old

Navy!

Shop iGive here... _http://www.igive.com/html/brand.cfm?b=1785_

(http://www.igive.com/html/brand.cfm?b=1785)

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Hello , Ann and Connie,

We just got back from a visit to our neurosurgeon. He said that Abby

has up to but not greater than a 10% chance for a retether (she has the

fatty filum kind) and he wants to see us back every 6 months to check

until she reaches adult height. He has only seen one retether in his 20

years. My main concern at this time is that she is not potty trained.

Our other issue is that she has Down syndrome and with this comes low

muscle tone and decreased sensitivity. Cognitively, she is currently

testing at her chronological age so this leads me to think the control

issues could be physiological or behavior and I am not sure how to

address this. I definitely want to rule out any physical causes and the

doctor this morning said to get with our pediatrician and discuss seeing

a urologist (this will be a new one for us and we have a lot of

doctors). If anyone else has had difficulties potty training on this

list, I would like to know what they were and what signs might indicate

if they physiological.

Also, how did you catch the tethered cord so early? Abby kept

complaining about leg pain and had a bruise on her back that would not

go away. Her orthopedic surgeon was monitoring a stress fracture and

actually caught the TC with a MRI because her leg pain was not going

away. I was also told that many/most tethered cords are not caught

until much older.

Thanks!

Laurie

Mom to Abby 5 with Down syndrome, tethered cord, asthma, IOL implant,

etc. etc. etc. and 3

conni60640@... wrote:

>

> In a message dated 8/4/2005 6:56:24 PM Eastern Standard Time,

> laurie.maddux@... writes:

>

> I thought once the cord was released we would be " done " but

> I just saw a post that said something like a cord can become tethered

> again?

>

>

> Welcome Laurie. My son is five also, and he had his cord

> released at

> four months of age. He is doing well now, but when he had large growth

> spurts in the past, he has shown signs of retethering (leg fatigue,

> buckling,

> pains, tingling, back tingling) but thankfully they always went away

> and for the

> past year or so he hasn't shown any other signs.

>

> What kind of tether did your daughter have? The fatty filum kind,

> where the

> base of the cord was fatty, thickened or otherwise held down so it

> couldn't

> move freely? If so, this kind of tether rarely retethers, although

> there is

> a less than ten percent chance it could. This is the kind my son

> has. The

> surgery is easier and less invasive.

>

> The other kind I usually see in children is the lipomyelomeningocele

> (LMC),

> in which the spine bones are actually open and a fatty lipoma extends

> from

> underneath the skin and all the way down into the spinal cord. It's

> kind of

> like spina bifida only with the skin over top closed up instead of

> open, and a

> lump of fat in place of the opening. This kind of tether has a

> higher rate

> of retethering due to the much more invasive surgery and larger

> defect, often

> involving grafts to cover the spinal cord, and more scar tissue.

> I've heard

> there is about a 30% chance of retethering.

>

> The symptoms of retethering are the same for both kinds though (usually

> weakness, tingling, or pain in lower limbs or back, bladder or bowel

> changes,

> foot or leg orthopedic changes) and I always keep an eye on these for

> early

> signs of problems. I've only known two or three people with fatty

> filums to

> retether in childhood, but I figure better safe than sorry, especially

> since my

> son has other issues ongoing.

>

> Connie

> Mom to Sara 13, Nicky 7 (GI issues, megacolon), and 5

> (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal

> fistula

> imperforate anus (repaired 5/00), single kidney, PDA (closed on its

> own),

> malformed pelvis and hemisacrum, mild long segment levoscoliosis with

> hemivertebrae, extra left rib, genital anomalies with hypospadius

> (repairs 9/00,11/00,

> 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01)

> and 4.5cm

> length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

> DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

> most beautiful smile

> ever)

> conni60640@..., _http://members.tripod.com/conni60640-ivil/_

> (http://members.tripod.com/conni60640-ivil/)

> <http://members.tripod.com/conni60640-ivil/%29>

>

> Support the VACTERLS conference, shop online at iGive at more than 500

> stores, like Lands End, & Noble and Target...LL Bean, Sears

> and Old Navy!

> Shop iGive here... _http://www.igive.com/html/brand.cfm?b=1785_

> (http://www.igive.com/html/brand.cfm?b=1785)

> <http://www.igive.com/html/brand.cfm?b=1785%29>

>

>

>

>

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  • 1 year later...

Kenzmadie,

You certainly have come to the right place and are very welcomed here. I am so

sorry that you had such a crappy mother and that your father died. Take care as

you grieve both. This is a safe place to vent and discuss and just be with

others that know what it is like to have an insane mother or father. or both!

Take care,

Greg.

New to group

My mother has suffered from borderline personality disorder for as

long as I can remember. She has history of doing the " typical "

stuff: writing long hateful letters to my self and my sister about

how she " only has 3 children now " and stating she doesn't understand

why WE hate her so (this was typically when we set boundaries with

her or disagreed with her); reporting she has been going blind since

I was old enough to remember; calling me at work 3 seperate times in

the last 20 years to tell me she had cancer (she did not); purposely

manipulating her diabetes; claiming all sorts of medical maladies;

having memories of events that never happened; not remembering events

that DID happen; telling me she feels suicidal; telling us intimate

details of her sexual relationship with my father; telling me how

depressed she feels; cutting off long term relationships with little

or no explanation (Gee, what did happen with Aunt Marie?); being

overly suspicious or outright paranoid about others; oh I could go on

and on. My sister hasn't spoken with her in over a year. They have

periods like that off and on. I've had one or two periods like that

with her myself. My mother cut my grandmother off, her extended

family off, her long time friends off. My sister, my brother, and I

can't stand her. I love her because she is my mother but I hate

her. I would have nothing to do with her if she wasn't related to

me. I know that's awful. We all have this kind of automatic

reaction to her at this point. When she tells me she wants to talk

to me about something, I get this feeling in my stomach like some

young girl whose uncle who sexually abused her just asked her to go

to the candy store. My blood pressure rises and I panic. I feel

like she wants to get so close to me and that if I let her, she'll

suck all the air out of me. The closer she tries to get the more I

avoid her. None of us want to deal with her. I'm afraid none of us

can. There is too much resentment there. She has health care

providers that I know must be scratching their heads wondering what

the deal is. Everyone thinks she is lovely when they first meet

her. Then they get to know her. But, I don't even want to get

involved by contacting her health care providers. When my sister

called my father's doctor to inquire about his health (because you

could never trust my mother's accounts), my mother became rageful,

accused my sister of being mentally ill, and stopped talking to her.

My sister got to see my father one more time before he died and he

was so sick he barely knew she was there. I'm still not clear what

he died of. She had Hospice so fooled that they were incredibly rude

to me when I called for information. I'm not writing this for

information on how to help her. I can't help her. I truly feel that

I am emotionally and physically incapable of helping her. I don't

want to help her. I want to tell her how crazy SHE is and how I

don't want anything to do with her. I'm getting to the point where

that is going to happen. Just wanted to vent to people that I hope

will " get it " because a lot of people don't. Thanks.

__________________________________________________

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Kenzmadie, I so get it. Your description of the feeling you get when

your mother says she wants to talk to you is dead on. I feel always

around my mother that she wants to suck the air out of me. When I am

not there for her the way she wants, I am afraid to walk around her

house in the dark, thinking she is lurking and may kill me. And yet,

to strangers or vulnerable people or babies, she is so sweet and

effervescent. How heartbreaking for her to have kept distance between

your father and his kids when he was dying. Its good you have sibs who

see what you do and that you know relating to your mother is a

fruitless battle. Keep taking care of yourself.

Caitlyn

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Hello group.

Kenzmadie, I read your thread and got mad and wanted to cry at the same

time. This disorder can make children feel like they are nuts and

always on a roller coaster of emotions. I just sealed 2 letters. One

to my nada and one to my dad. because they never communicate and when

they do you never know who is telling the truth. I just listed a bunch

of I don't understand questions, which I know will never get answered,

but I had to do it for my sanity. I also explained how all the people

we used to share have now been changed....hairdressers, banks,

churches, even grocery stores. I just can't take all the horrible

looks I get from people in the community who I know have heard her

entire story of what a terrible daughter I am. Anyway, I am glad I

found this group. It helps in a way but then makes my head hurt trying

to figure this stuff out.

Rhonda

>

> Kenzmadie, I so get it. Your description of the feeling you get when

> your mother says she wants to talk to you is dead on. I feel always

> around my mother that she wants to suck the air out of me. When I am

> not there for her the way she wants, I am afraid to walk around her

> house in the dark, thinking she is lurking and may kill me. And yet,

> to strangers or vulnerable people or babies, she is so sweet and

> effervescent. How heartbreaking for her to have kept distance

between

> your father and his kids when he was dying. Its good you have sibs

who

> see what you do and that you know relating to your mother is a

> fruitless battle. Keep taking care of yourself.

> Caitlyn

>

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Hi kenzmadie, I can relate to almost all of what you have written

about your mother. You wrote:

<<<When she tells me she wants to talk

to me about something, I get this feeling in my stomach like some

young girl whose uncle who sexually abused her just asked her to go

to the candy store. My blood pressure rises and I panic. I feel

like she wants to get so close to me and that if I let her, she'll

suck all the air out of me. The closer she tries to get the more I

avoid her. None of us want to deal with her. I'm afraid none of us

can.>>>

I can soooo relate to this. I dreaded the phone calls where she took

on a certain tone of voice and announced she had something she needed

to talk to me about. My blood pressure rose too, and I had knots in

my somach before she even began her subject which was usually an

attempt to make me feel guilty for some imagined thing I had done or

had failed to do. For years she was very effective at making me

suffer and most of my life I wasted energy trying to please her. I

finally found out about BPD and though my mother was never officially

diagnosed, I feel strongly that she was BPD. After learning all about

her condition, I finally learned to set boundaries, get myself

unenmeshed, and gave up trying to do anything beyond what I felt was

my duty as a daughter. I finally realized nothing I could ever do

would make her happpy.

My mother passed away this past August at the age of 96. I is

honestly a relief for me and my sisters. We know she is in a better

place and free of the illness she suffered with. We are in a better

condition here on earth and can now concentrate our time and efforts

toward enjoying our grandchildren and friends in life instead of

always having the pressure of our mother hanging over our heads.

I was 60 years old before I learned about the disfunction in our

family and how it had affected me. But it is never too late to learn

and to change. And of course, I knew my mother would never be able to

change, so I changed me. It has really turned out to be a blessing,

because I have learned to be a much healtier happier person myself.

Welcome to the board. I hope you will find as much comfort and

enlightenment here as I have. Dee

>

> My mother has suffered from borderline personality disorder for as

> long as I can remember. She has history of doing the " typical "

> stuff: writing long hateful letters to my self and my sister about

> how she " only has 3 children now " and stating she doesn't understand

> why WE hate her so (this was typically when we set boundaries with

> her or disagreed with her); reporting she has been going blind since

> I was old enough to remember; calling me at work 3 seperate times in

> the last 20 years to tell me she had cancer (she did not); purposely

> manipulating her diabetes; claiming all sorts of medical maladies;

> having memories of events that never happened; not remembering events

> that DID happen; telling me she feels suicidal; telling us intimate

> details of her sexual relationship with my father; telling me how

> depressed she feels; cutting off long term relationships with little

> or no explanation (Gee, what did happen with Aunt Marie?); being

> overly suspicious or outright paranoid about others; oh I could go on

> and on. My sister hasn't spoken with her in over a year. They have

> periods like that off and on. I've had one or two periods like that

> with her myself. My mother cut my grandmother off, her extended

> family off, her long time friends off. My sister, my brother, and I

> can't stand her. I love her because she is my mother but I hate

> her. I would have nothing to do with her if she wasn't related to

> me. I know that's awful. We all have this kind of automatic

> reaction to her at this point. When she tells me she wants to talk

> to me about something, I get this feeling in my stomach like some

> young girl whose uncle who sexually abused her just asked her to go

> to the candy store. My blood pressure rises and I panic. I feel

> like she wants to get so close to me and that if I let her, she'll

> suck all the air out of me. The closer she tries to get the more I

> avoid her. None of us want to deal with her. I'm afraid none of us

> can. There is too much resentment there. She has health care

> providers that I know must be scratching their heads wondering what

> the deal is. Everyone thinks she is lovely when they first meet

> her. Then they get to know her. But, I don't even want to get

> involved by contacting her health care providers. When my sister

> called my father's doctor to inquire about his health (because you

> could never trust my mother's accounts), my mother became rageful,

> accused my sister of being mentally ill, and stopped talking to her.

> My sister got to see my father one more time before he died and he

> was so sick he barely knew she was there. I'm still not clear what

> he died of. She had Hospice so fooled that they were incredibly rude

> to me when I called for information. I'm not writing this for

> information on how to help her. I can't help her. I truly feel that

> I am emotionally and physically incapable of helping her. I don't

> want to help her. I want to tell her how crazy SHE is and how I

> don't want anything to do with her. I'm getting to the point where

> that is going to happen. Just wanted to vent to people that I hope

> will " get it " because a lot of people don't. Thanks.

>

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Dee, you wrote

" I finally learned to set boundaries, get myself unenmeshed, and gave

up trying to do anything beyond what I felt was my duty as a daughter.

I finally realized nothing I could ever do would make her happy "

This is the place I have come to. Then, recently, my mother had an

accident and I went out to help - get food in the freezer, see if she

and my father needed someone to come in and help, do a little

organizing, shopping, etc. It did not go well. My mother wanted love

and affection - something I do not have in me to give to her. She

ended up accusing and raging about various things. It turned out both

of my parents probably felt worse after my visit than before.

Did you have any similar experiences? How did you deal with it? What

you described is exactly how I see myself - dutiful. But I do not want

to be emotionally involved. And this is what she wants (emotional

involvement). Do you have any thoughts you might share with me on this?

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Hi buscar4, Yes, I know just what you are talking about. My mother

was a waif/queen and was constantly complaining and asking for

sympathy, affection, reassurance that I loved her. I used to say I

did love her I just didn't like her. I think there was truth in that.

I did love her. Not everything about her was unlovable. She was a

very high functioning BP who I think really tried to do what she

thought was best. She just couldn't ever see life as it really was.

It was always colored by the waif/queen glasses she wore. My mom

wasn't much of a witch although she had a lot of anger. But not much

ranting/raving was ever done. She worked through FOG, with a big

emphasis on the O and G. (Fear, Obligation, Guilt) This fact only

made it harder to not believe something was wrong with me, that I

really was responsible for all the times she said I hurt her deeply.

I think that is why it took so long in my lifetime to figure things out.

I finally was able to get over the anxious feelings whenever I knew I

was going to see her. It hardened me a bit, but I don't feel guilt

over that. I had to survive.

My sisters and I would always say all she wants is sympathy--a

comodity we all ran out of years ago. Our supply of it just finally

vanished. I remember a day she kept whining over and over saying she

neede me to love her. I had already told her I did, but I guess I

wasn't very convincing. Finally I told her that you can't demand

love. She took a breath, paused, and agreed with me. That at least

ended the uncomfortable moments for that day.

I think one of the problems of being with her was that I had to comply

with whatever she was saying, thinking, whatever. It made me feel

that I wasn't being true to myself. I was being false. Trying to

give affection when it isn't really felt feels like a lie. It is so

hard. I have understanding of how hard this is for you. I, too,

often felt after going to help her that what ensued was so

uncomfortable tht I wish I hadn't gone. But now that she is gone, I

am glad I still went and tried to do what I could for her. How she

chose to interpret my help was her problem. Not mine. I had to learn

to measure my success by meeting my own goals with her and not what

she wanted. What she wanted was impossible.

Once quite a while ago I posted the analogy from How to Hug a

Porcupine that helped me to feel alright about myself. It said that

trying to meed the needs of a toxic person (BP) were just like

standing at the rim of the Grand Canyon and trying to fill it up with

a squirt gun. The difference was that the Grand Canyon has a

bottom!!!!!! That imagery always helped me. Hope it will help you.

Also the idea of meeting my own goals of what a good daughter would do

came from How to Hug a Porcupine by Lund.

My best to you, Dee

>

> Dee, you wrote

> " I finally learned to set boundaries, get myself unenmeshed, and gave

> up trying to do anything beyond what I felt was my duty as a daughter.

> I finally realized nothing I could ever do would make her happy "

>

> This is the place I have come to. Then, recently, my mother had an

> accident and I went out to help - get food in the freezer, see if she

> and my father needed someone to come in and help, do a little

> organizing, shopping, etc. It did not go well. My mother wanted love

> and affection - something I do not have in me to give to her. She

> ended up accusing and raging about various things. It turned out both

> of my parents probably felt worse after my visit than before.

>

> Did you have any similar experiences? How did you deal with it? What

> you described is exactly how I see myself - dutiful. But I do not want

> to be emotionally involved. And this is what she wants (emotional

> involvement). Do you have any thoughts you might share with me on this?

>

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  • 4 weeks later...

Hello all,

Although I joined this group a little while ago, this is the first

time I have posted. We think that my mother is BP, although she will

likely never be diagnosed, as she " doesn't believe in " psychology or

therapy. The suggestion that she is BP was truly a gift, as was

finding out about this group and all of the people with similar

stories and experiences. Thank you for your courage in sharing your

stories; the validation has been wonderful!

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  • 6 months later...
Guest guest

Hi Gail

Welcome to the group. Sorry this is late, but I haven't been on in a

while. I suffer from autonomic neuropathy in both my feet and right

leg and am in constant pain. I also have had to give up a lot since

getting sick a little over 2 yrs ago.

Hugs

Diane-Minnesota

>

> hiya , this will be short i see alot of people on here have pn/rsd

> also . how can the 2 be sorted out? some drs say i have rsd some say

pn

> i wish someone would figure out something. i've lost so much in the

> last 2 yrs. i bred cornsnakes hadd to stop due to nerve pn in

> dominant hand . rode my harley for 14 yrs had to stop due to the

> vibration and gripping i miss that more than any hobbies i've given

> up. i lost a brother last summer who also sufered w/ chronic back

pn

> from 3 surgeries which led to nerve pn. i miss him soooo much we

> understood one anothers misery and attitudes when no one else in the

> family did. hope to get to know good friends here peace, gail

>

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