Need help

[Guest guest]

,

If your neuro prescribes it, won't the hospital have to do it or find out

from other hospitals how to go about getting the IVIG???

Grace

On Tue, 6 Jul 2004 17:50:47 -0400 " Mike Mchugh "

<mcpitza@...> writes:

> Okay Group,

> You may remeber my son suddenly got well on ciprofloxin. Well the

> ciprofloxin stopped and he starting having seizures again. The

> Neurologist says, go ahead and try IV IG but no one at A.I. Dupont

> Hospital for Children in Delaware does this. We live in land.

> Does anyone know the closest place that can offer this treatment ?

>

> M

>

>

>

[Guest guest]

My Neuro claimed he could not prescribe it as he had never used the

treatment- he cliamed the hospital doesn't use the treatment but I

could go to University of Pittsburgh which does use it. A friend of

mine who is a doctor at the same hospital had told me that they were

not sure how or why the IV Ig worked and that it was very

expensive...from looking into it I have found pricing of $20,000. I

am doubtful my insurance would pay for this - especially in

Pittsburgh. I did get a few very kind e-mails off list that I believe

will prove very helpful and from them I have something else we are

going to look into first in the meantime...

[Guest guest]

Hi ,

That's frightening. Hope you get over it very quickly and get your kids

back. My thoughts are with you.

Good luck,

[Guest guest]

Dear ,

How very scarey for you! I am sorry that you got so sick so quickly. Your

children must be worried about you, too. I hope that their father will be

considerate of all their fears and concerns while they are in his care. I hope

you will be able to call them on a routine basis until you are completely

swelling-free and have them home again.

You are in my prayers,

Gentle Hugs,

Carol M. in CA

[Guest guest]

Dear , I've been told I have a touch of vasculitis if that is even

possible. I know my veins in my legs and some other places are incredibly

sore and at times my doctor has blamed them for my edema in my legs and

feet. I've never heard of it happening in the brain, but I guess it can

happen anywhere you have blood vessels. Since you are in the hospital with

this, I'm thinking they have surely had other specialists rule out anything

else that could have caused these symptoms. I can sure see how upset and

unhappy you are with this.

Do you trust your doctor completely? It seems to me for something as severe

as this is right now you should get a second opinion just to be safe. I

know Enbrel has a lot of side effects, but I don't remember if blood vessel

problems were one of them. Just make sure the doctors are on the right

track and you aren't dealing with something else. Sometimes they are too

quick to blame things on the one disease they know we have.

I'm sure you do miss your children. Did they say how long it takes for

something like this to go away or get better? Well I hope you are better

soon and I hope someone in the group can ease your fears that this is a

" normal " thing for PA. It's the first time I've heard of it, but I'm not a

authority. Take care and let me know how you are doing. I hope you have

someone with you to help you while you are home ill. Take care and please

keep in touch. Love, Fran

[Guest guest]

-Hi ,

that's a bad flare!! I've had several that bad over the years but if

vasculitis was involved I didn't know...I'm hoping the prednisone

will calm it down fairly quickly and you will be back with your

children soon! Sorry I can't offer more help.

thinking of you,

Marti

[Guest guest]

Dear Fran,

You are right, apparently vasculitis can happen anywhere there is a

blood vessel. I trust my Rheumatologist completly, unfortunatly,

the hospital I was taken to (I was in no condition to contribute to

the decision) was one he didn't see patients at. I will see him

tomorrow. I am fortunate that my best girl friend is a physician

and she stayed with me and coordinated the specialists and tests. I

had a CT scan, MRI and spinal tap. The MRI showed the swelling in

my brain. The Neurologist said that he didn't think it was from the

Enbrel but it is possible. Since I also had flares in my hands,

feet and knees it lead him to believe it was part of the PA. I'll

feel better when I see to my physician tomorrow.

My ex-husband is taking care of the children, a situation I am not

happy with but at least I know they are safe. I am speaking with

them daily and hope they will be back with me by the end of the

week. He is not very supportavie of me (he thinks I make this

disease up) but I no longer need his validation. The doctor did

call him directly to explain what was wrong so that helped. I am

back at home now and my friends and neighbors have been checking in

on me every few hours. The Neuro told me that I should be back

to " normal " by next week. I am feeling much better, the confusion

is less and only my right hand and foot are still swollen. I am

going to need to make a plan in case this happens again.

Thanks for all of your support. I'll keep you poseted.

> Dear , I've been told I have a touch of vasculitis if that

is even

> possible. I know my veins in my legs and some other places are

incredibly

> sore and at times my doctor has blamed them for my edema in my

legs and

> feet. I've never heard of it happening in the brain, but I guess

it can

> happen anywhere you have blood vessels. Since you are in the

hospital with

> this, I'm thinking they have surely had other specialists rule out

anything

> else that could have caused these symptoms. I can sure see how

upset and

> unhappy you are with this.

>

> Do you trust your doctor completely? It seems to me for something

as severe

> as this is right now you should get a second opinion just to be

safe. I

> know Enbrel has a lot of side effects, but I don't remember if

blood vessel

> problems were one of them. Just make sure the doctors are on the

right

> track and you aren't dealing with something else. Sometimes they

are too

> quick to blame things on the one disease they know we have.

>

> I'm sure you do miss your children. Did they say how long it

takes for

> something like this to go away or get better? Well I hope you are

better

> soon and I hope someone in the group can ease your fears that this

is a

> " normal " thing for PA. It's the first time I've heard of it, but

I'm not a

> authority. Take care and let me know how you are doing. I hope

you have

> someone with you to help you while you are home ill. Take care

and please

> keep in touch. Love, Fran

[Guest guest]

Dear ,

I guess I was just shocked that PA could cause vasculitis in your brain.

It's really scary to think that could happen to any of us who suffer from

this obnoxious disease. You said your only real warning was confusion?

Plus swelling in your hands and feet? I have that a lot in my hands and

feet and my upper thighs. It seems to be the worst in my leg veins and my

doctor has thought several times it was a blood clot. So far that's been

negative every time. My leg is sore all along where the vein runs down my

leg and even having a simple procedure like a ultra sound hurts like crazy.

I plan to have it checked at the Cleveland Clinic when I go next week, if

the next hurricane doesn't mess up my plans again..lol.

I'm so glad you caught it early and you had your friend with you. Anymore,

I think going to the hospital you need a family member with you or friend

all the time. The nurses are just too busy to see what is going on all the

time and you need someone who can speak for you when you can't. Having a

friend who is a physician is the best of both worlds. I'm sure she made

sure you had the best and all the tests you needed to have done as well.

I can imagine how much you miss your children. Mine are 21 and 23 and I

still miss them every time they leave. Being separated at such a young age

would have driven me crazy too. It's too bad your X isn't more

understanding, but then he probably wouldn't be your X if he was

understanding in the first place. I'm glad you don't let him or his stupid

beliefs bother you or bring you down. It's so stupid to think we just can

make up a disease like PA. Who would ever think up of all the things this

one disease can do to you? It sounds like to me he has a guilty conscious

and it's easier for him to cope if he doesn't feel sorry for you at all.

Either way, it sounds like you made a great decision to get rid of him. At

least like you said the children are safe with him even if they aren't as

happy as they would be with you. Once they get back home, they'll forget

all about their " trip " to Dads.

I meant to ask you if you had a headache with the brain swelling. I doubt I

would even realize anything was wrong. I'm so glad you got to the hospital

in time and got the care you needed. Keep us up to date on what is going on

and take care of yourself. Try not to stress out too much and just try to

relax during this free time. Take care and I'm sure thinking of you. Love,

Fran

[ ] Re: need help

Dear Fran,

You are right, apparently vasculitis can happen anywhere there is a

blood vessel. I trust my Rheumatologist completly, unfortunatly,

the hospital I was taken to (I was in no condition to contribute to

the decision) was one he didn't see patients at. I will see him

tomorrow. I am fortunate that my best girl friend is a physician

and she stayed with me and coordinated the specialists and tests. I

had a CT scan, MRI and spinal tap. The MRI showed the swelling in

my brain. The Neurologist said that he didn't think it was from the

Enbrel but it is possible. Since I also had flares in my hands,

feet and knees it lead him to believe it was part of the PA. I'll

feel better when I see to my physician tomorrow.

My ex-husband is taking care of the children, a situation I am not

happy with but at least I know they are safe. I am speaking with

them daily and hope they will be back with me by the end of the

week. He is not very supportavie of me (he thinks I make this

disease up) but I no longer need his validation. The doctor did

call him directly to explain what was wrong so that helped. I am

back at home now and my friends and neighbors have been checking in

on me every few hours. The Neuro told me that I should be back

to " normal " by next week. I am feeling much better, the confusion

is less and only my right hand and foot are still swollen. I am

going to need to make a plan in case this happens again.

Thanks for all of your support. I'll keep you poseted.

[Guest guest]

In a message dated 9/7/04 5:30:21 PM GMT Daylight Time, fran@...

writes:

It's so stupid to think we just can

make up a disease like PA. Who would ever think up of all the things this

one disease can do to you?

Hi and Fran,

I have got to agree. Who could think we could possibly make something like

this up. Well..........actually, I have made it up. It took me an age to get

the skin growing seven times faster than normal thing right! And also

getting my fingers and toes to look deformed? Now I'm sure you will all agree

that's difficult. Lol

Hope you are still improving ok .

Take care,

[Guest guest]

This group may not be only for those who have lost a loved one

to cancer, but maybe it will be helpful to you.

Here is the URL for a Group for Grief Support:

grief_support/

> Is there a support group for ppl who lost loved ones to cancer.

Please help

>

>

>

[Guest guest]

Hi,

The field of hormone therapy is so new, your parents would not have

had the ability to get a diagnosis of low T when you were in your

early teens.

Not a doctor but think hormone therapy may have been effective when

you were going thru your growth spurt. Maybe not.

I would see another doctor to make myself feel better if he is not

going to treat you for you lack of genital growth.

ernestnolan

>

>

> i have a small penis and testicles. been made fun of all my life.

> went to urologist and he said nothing he can do. thought maybe i had

> hypogonadism and i tested low for normal test in a male. i also was

> low in gh and am below average in fsh whatever that is. i hit puberty

> very late and hope that test supplimentation from an endocrinoloist

> can save me. let me know what u think and if u have similar prob. i

> not sure if i have hypo or not. please help

>

> j.g.

[Guest guest]

>

>

> i have a small penis and testicles. been made fun of all my life.

> went to urologist and he said nothing he can do. thought maybe i

had

> hypogonadism and i tested low for normal test in a male. i also

was

> low in gh and am below average in fsh whatever that is. i hit

puberty

> very late and hope that test supplimentation from an

endocrinoloist

> can save me. let me know what u think and if u have similar prob.

i

> not sure if i have hypo or not. please help

>

> j.g.

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

I was diagnosed 33 years ago, although I never heard the

word " hypogonadism " until I joined this list about a year ago.

Back then they just said " shit happens " and told me to stick one cc

of depotestosterone in my upper thigh once every 4-5 weeks for the

rest of my life. And so I did for ever 30 years. Was NEVER blood

tested the entire time, and cycled up and down on the depo with

terrible mood swings, was treated three times for severe depression.

I am both primary and secondary hypo and had to have hormone growth

shots to go through puberty at age 21. Think my teens were much

fun, you have no idea of the ridicule I went through. I feel for

you ny because I know what you went through. Bottom line advice

is that there nothing to be done to make you penis or testicle

bigger, in fact if you shoot depo or any supplemental T, they will

probably atrophy into useless peanuts, mine did. But, on the bright

side I hope you work with a good endocrinologist and get regular

blood tests for your T level. I have been slathering on a T gel my

pharmacy makes up and it works fine, if I remember to do it every

day. If I had to do it all over again, I would shoot 1/2 a cc of

Depo once a week to keep things stable and regular. I was one

angry and confused SOB for many years because of this. Then I grew

up and looked around and saw people suffering and dying with cancer,

MS, and all kinds of other horrible things much worse than what we

have. It's all attitude, and I hope you come to grips with the

right way and learn to live with it as best you can.

very best wishes

norton

[Guest guest]

I wish I can go back to when my daughters neuro first suggested starting

seizure medication, because i would of never allowed it knowing what i know now

She was having the same type your child is about the same length and

frequency.

She has been on every drug there is, and it seems to only make things worse.

She is going to be 8 in 2 weeks. Her seizures started at 18 months.

And now, she is on 3 meds and still having seizures. 40-50 a day that can

last up to 15 minutes!!!!!

I am at my wits end. Through my years of research, I believe the meds make

things worse.

I am trying to wean her off all meds, and its VERY hard.

My advice to you and ANYONE beginning this " journey "

is to try a vitamin regimin before meds. Try the keto diet before meds,

try ANYTHING before meds.

Meds work for some, but dont work for alot of others.

Bring on negative side effects and much more.....

Good luck

[Guest guest]

Jessy, I have complex partial and I am on Phenobarbitol and trileptal

also. I am in the middle of weaning off of pheno, which I have been on

it for over 25 years or more. It does no good anymore. I am having a

hard time getting off of it. I am addicted to it. Yes it makes you

tired, but trileptal can make you sleepy after taking my meds. Maybe

she is on a high dose of it for her age. In my opinion she is on the

worse drug there is Phenobarbitol.

It is too dangerous for a little girl of that age. Also the

trileptal has helped me alot. One flaw in the drug. It takes away my

sodium. So much that I end up with a grand mal seizure. SO I am

battling the sodium in take right now. So be careful of that.

I have taken flax oil capsules for about a two years now. I have

gotten rid of nine seizures a month, and 234 auras a month. I am now

down to one every month or one every other month. It has worked

wonders for me. The doctors just cant believe it.

best of luck

>

> Hi everyone,

>

> This is the first time I am posting so I'll tell you about my

> daughter, Chloe. She is four months old and has been having complex

> partial seizures since about one month old. We have been to

> Children's of Atlanta about four times, each time for two to four

> nights. We have had two MRIs, CAT Scans, spinal taps, EEG, and video

> EEG; all of which were normal. They do not know the cause of her

> seizures. She has seizures pretty much everyday that last about 30

> seconds, at least five a day. She was first on Phenobarbital, which

> they kept increasing. Then they added Trileptal to it. Now the

> neuro says she has failed the Pheno so they are weaning her off that

> and increasing the Trileptal. We also have ativan for clusters,

> which hasn't seemed to work. I am getting really frustrated because

> I think she is having too many seizures in a day and they never seem

> to really help when we take her to Children's. She is always

> sleeping because of the medicine, what kind of life is that? I think

> the Pheno is possibly triggering the seizures because the neuro says

> it makes the liver overactive which breaks down the medication

> faster. I am scared she will fail the Trileptal as well and then

> what? I am worried about what will happen down the road with her

> development. They say she is developing fine now but they don't know

> if she will grow out of it or what. Can anyone give me any

> information on what they have done for complex partial seizures and

> how things are progressing.

>

> Thanks,

> Jessy

[Guest guest]

,

How much of that flaxseed oil do you take and can you please tell me your size.

My daughter is 5'1 and 134 lbs. I'm just trying to see how much I should give

her. Thanks!

Grace

Jessy, I have complex partial and I am on Phenobarbitol and trileptal

also. I am in the middle of weaning off of pheno, which I have been on

it for over 25 years or more. It does no good anymore. I am having a

hard time getting off of it. I am addicted to it. Yes it makes you

tired, but trileptal can make you sleepy after taking my meds. Maybe

she is on a high dose of it for her age. In my opinion she is on the

worse drug there is Phenobarbitol.

It is too dangerous for a little girl of that age. Also the

trileptal has helped me alot. One flaw in the drug. It takes away my

sodium. So much that I end up with a grand mal seizure. SO I am

battling the sodium in take right now. So be careful of that.

I have taken flax oil capsules for about a two years now. I have

gotten rid of nine seizures a month, and 234 auras a month. I am now

down to one every month or one every other month. It has worked

wonders for me. The doctors just cant believe it.

best of luck

>

> Hi everyone,

>

> This is the first time I am posting so I'll tell you about my

> daughter, Chloe. She is four months old and has been having complex

> partial seizures since about one month old. We have been to

> Children's of Atlanta about four times, each time for two to four

> nights. We have had two MRIs, CAT Scans, spinal taps, EEG, and video

> EEG; all of which were normal. They do not know the cause of her

> seizures. She has seizures pretty much everyday that last about 30

> seconds, at least five a day. She was first on Phenobarbital, which

> they kept increasing. Then they added Trileptal to it. Now the

> neuro says she has failed the Pheno so they are weaning her off that

> and increasing the Trileptal. We also have ativan for clusters,

> which hasn't seemed to work. I am getting really frustrated because

> I think she is having too many seizures in a day and they never seem

> to really help when we take her to Children's. She is always

> sleeping because of the medicine, what kind of life is that? I think

> the Pheno is possibly triggering the seizures because the neuro says

> it makes the liver overactive which breaks down the medication

> faster. I am scared she will fail the Trileptal as well and then

> what? I am worried about what will happen down the road with her

> development. They say she is developing fine now but they don't know

> if she will grow out of it or what. Can anyone give me any

> information on what they have done for complex partial seizures and

> how things are progressing.

>

> Thanks,

> Jessy

[Guest guest]

,

I absolutely feel the same way you do and I will do my very best to take my

daughter off of all AEDs and hope and pray that she's still better off without

them than she has been on them. She went from 3 possibly 4 seizures in over 10

months to over 100 in 4 months and continues to have at least 5 per month and

this is on meds. We're on our 3 AED and we're not even going to mention the

awful awful side effects that rob her of her cognitive skills and her happiness.

Grace

sarahbri813@... wrote:

I wish I can go back to when my daughters neuro first suggested starting

seizure medication, because i would of never allowed it knowing what i know now

She was having the same type your child is about the same length and

frequency.

She has been on every drug there is, and it seems to only make things worse.

She is going to be 8 in 2 weeks. Her seizures started at 18 months.

And now, she is on 3 meds and still having seizures. 40-50 a day that can

last up to 15 minutes!!!!!

I am at my wits end. Through my years of research, I believe the meds make

things worse.

I am trying to wean her off all meds, and its VERY hard.

My advice to you and ANYONE beginning this " journey "

is to try a vitamin regimin before meds. Try the keto diet before meds,

try ANYTHING before meds.

Meds work for some, but dont work for alot of others.

Bring on negative side effects and much more.....

Good luck

[Guest guest]

Hi Grace I take three capsules a day. Sometimes it is only two times

a day if I forget to take the lunch one. I am 5'4 and 190. Now grace

you made me reveal my secrets that no one knows. Now everyone knows.

lolol

> >

> > Hi everyone,

> >

> > This is the first time I am posting so I'll tell you about my

> > daughter, Chloe. She is four months old and has been having complex

> > partial seizures since about one month old. We have been to

> > Children's of Atlanta about four times, each time for two to four

> > nights. We have had two MRIs, CAT Scans, spinal taps, EEG, and video

> > EEG; all of which were normal. They do not know the cause of her

> > seizures. She has seizures pretty much everyday that last about 30

> > seconds, at least five a day. She was first on Phenobarbital, which

> > they kept increasing. Then they added Trileptal to it. Now the

> > neuro says she has failed the Pheno so they are weaning her off that

> > and increasing the Trileptal. We also have ativan for clusters,

> > which hasn't seemed to work. I am getting really frustrated because

> > I think she is having too many seizures in a day and they never seem

> > to really help when we take her to Children's. She is always

> > sleeping because of the medicine, what kind of life is that? I think

> > the Pheno is possibly triggering the seizures because the neuro says

> > it makes the liver overactive which breaks down the medication

> > faster. I am scared she will fail the Trileptal as well and then

> > what? I am worried about what will happen down the road with her

> > development. They say she is developing fine now but they don't know

> > if she will grow out of it or what. Can anyone give me any

> > information on what they have done for complex partial seizures and

> > how things are progressing.

> >

> > Thanks,

> > Jessy

>

>

>

>

>

>

[Guest guest]

,

I was going to tell you to email me privately if you didn't feel comfortable

doing it through the group and somehow I got distracted and forgot, sorry!

How many mgs are in each capsule?

Grace

angel_lts@... wrote:

Hi Grace I take three capsules a day. Sometimes it is only two times

a day if I forget to take the lunch one. I am 5'4 and 190. Now grace

you made me reveal my secrets that no one knows. Now everyone knows.

lolol

> >

> > Hi everyone,

> >

> > This is the first time I am posting so I'll tell you about my

> > daughter, Chloe. She is four months old and has been having complex

> > partial seizures since about one month old. We have been to

> > Children's of Atlanta about four times, each time for two to four

> > nights. We have had two MRIs, CAT Scans, spinal taps, EEG, and video

> > EEG; all of which were normal. They do not know the cause of her

> > seizures. She has seizures pretty much everyday that last about 30

> > seconds, at least five a day. She was first on Phenobarbital, which

> > they kept increasing. Then they added Trileptal to it. Now the

> > neuro says she has failed the Pheno so they are weaning her off that

> > and increasing the Trileptal. We also have ativan for clusters,

> > which hasn't seemed to work. I am getting really frustrated because

> > I think she is having too many seizures in a day and they never seem

> > to really help when we take her to Children's. She is always

> > sleeping because of the medicine, what kind of life is that? I think

> > the Pheno is possibly triggering the seizures because the neuro says

> > it makes the liver overactive which breaks down the medication

> > faster. I am scared she will fail the Trileptal as well and then

> > what? I am worried about what will happen down the road with her

> > development. They say she is developing fine now but they don't know

> > if she will grow out of it or what. Can anyone give me any

> > information on what they have done for complex partial seizures and

> > how things are progressing.

> >

> > Thanks,

> > Jessy

>

>

>

>

>

>

[Guest guest]

Grace that is okay. lol I got a kick out of it.

1000mg and I take it three times a day. It has worked wonders for me.

Finally something has worked. It has changed my life. Doctors have

said that other people have tried it, and they get very little

results. They just cant believe what it has done for me.

AMAZING. I hope you find that same result for your daughter some day.

best of luck with it.

> > >

> > > Hi everyone,

> > >

> > > This is the first time I am posting so I'll tell you about my

> > > daughter, Chloe. She is four months old and has been having

complex

> > > partial seizures since about one month old. We have been to

> > > Children's of Atlanta about four times, each time for two to four

> > > nights. We have had two MRIs, CAT Scans, spinal taps, EEG, and

video

> > > EEG; all of which were normal. They do not know the cause of her

> > > seizures. She has seizures pretty much everyday that last about 30

> > > seconds, at least five a day. She was first on Phenobarbital,

which

> > > they kept increasing. Then they added Trileptal to it. Now the

> > > neuro says she has failed the Pheno so they are weaning her off

that

> > > and increasing the Trileptal. We also have ativan for clusters,

> > > which hasn't seemed to work. I am getting really frustrated

because

> > > I think she is having too many seizures in a day and they never

seem

> > > to really help when we take her to Children's. She is always

> > > sleeping because of the medicine, what kind of life is that? I

think

> > > the Pheno is possibly triggering the seizures because the neuro

says

> > > it makes the liver overactive which breaks down the medication

> > > faster. I am scared she will fail the Trileptal as well and then

> > > what? I am worried about what will happen down the road with her

> > > development. They say she is developing fine now but they don't

know

> > > if she will grow out of it or what. Can anyone give me any

> > > information on what they have done for complex partial seizures and

> > > how things are progressing.

> > >

> > > Thanks,

> > > Jessy

> >

> >

> >

> >

> >

> >

[Guest guest]

,

Thanks, I hope so too!

Grace

angel_lts@... wrote:

Grace that is okay. lol I got a kick out of it.

1000mg and I take it three times a day. It has worked wonders for me.

Finally something has worked. It has changed my life. Doctors have

said that other people have tried it, and they get very little

results. They just cant believe what it has done for me.

AMAZING. I hope you find that same result for your daughter some day.

best of luck with it.

> > >

> > > Hi everyone,

> > >

> > > This is the first time I am posting so I'll tell you about my

> > > daughter, Chloe. She is four months old and has been having

complex

> > > partial seizures since about one month old. We have been to

> > > Children's of Atlanta about four times, each time for two to four

> > > nights. We have had two MRIs, CAT Scans, spinal taps, EEG, and

video

> > > EEG; all of which were normal. They do not know the cause of her

> > > seizures. She has seizures pretty much everyday that last about 30

> > > seconds, at least five a day. She was first on Phenobarbital,

which

> > > they kept increasing. Then they added Trileptal to it. Now the

> > > neuro says she has failed the Pheno so they are weaning her off

that

> > > and increasing the Trileptal. We also have ativan for clusters,

> > > which hasn't seemed to work. I am getting really frustrated

because

> > > I think she is having too many seizures in a day and they never

seem

> > > to really help when we take her to Children's. She is always

> > > sleeping because of the medicine, what kind of life is that? I

think

> > > the Pheno is possibly triggering the seizures because the neuro

says

> > > it makes the liver overactive which breaks down the medication

> > > faster. I am scared she will fail the Trileptal as well and then

> > > what? I am worried about what will happen down the road with her

> > > development. They say she is developing fine now but they don't

know

> > > if she will grow out of it or what. Can anyone give me any

> > > information on what they have done for complex partial seizures and

> > > how things are progressing.

> > >

> > > Thanks,

> > > Jessy

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello -

Your doctor is right. Propecia is not worth the risk at all. It can

cause all sorts of hormone-related problems - low T, high E2, etc.

In the scheme of life, is losing hair really that big of a deal?

Most everyone in this group would say that feeling good mentally and

physically is the most important thing. " Cosmetic " issues like hair

loss should be the least of your worries.

I'm 28 and I started losing my hair at 23. I've been using Rogaine

for over 3 years and I believe it has stopped (or slowed down

considerably) any further hair loss. So I would give it a shot. But

don't lose sleep over it! There are many many more important things

to worry about, like getting your T up and feeling GREAT. Good luck

Dave K.

>

> Just getting started with my replacement therapy, just got a 5th

> shot today. The first four shots was 200mg. but today the doctor

ask

> how was I doing and I said not good yet, so he up it to 300mgs.

every

> two weeks. I told him that i was really worried about hair loss

and

> had been taking propecia to help with this. He said I should stop

> taking the propecia because it was doing more harm than good. What

> can I do now? He had little knowledge about what to do. He said

try

> rogaine. Has anyone else been in my shoes? If so what are you

doing?

> Also is anyone else losing hair because of their testosterone

> replacemenrt. Thanks for any help. Also if I `m going to lose alot

of

> hair because of this is the whole thing worth it.

[Guest guest]

Hi,

Does your doc have blood tests scheduled? 200mg every 2 weeks should be

doing something. How you feel is a good measurement, but tests are needed

too. For example, your total T could be high but free T low. Tests should

include at least free T, estradiol (E2), SHBG, DHEA and, especially for hair

concerns, DHT. (Suggestions for addl. tests anyone?)

Some guys here report it takes a long time to get physical improvement if

Propecia is part of the problem. Stop the Propecia. If it causes as much

hormone trouble as I've heard from folks here, there's eventually going to be a

class-action lawsuit. Go with Rogaine.

I assume your T tested low enough to warrant TRT. It then makes sense to

raise it back to normal levels. You're therefore worried about hair loss at

normal T levels. Take a look at that from another direction. If your T was

normal, would you intentionally retard it to morbidly low levels to prevent hair

loss?

The hair issue is important to you, and you have every right to prioritise it as

you wish. Remember, TRT helps builds self-esteem and confidence too.

I personally don't know about testosterone replacement and hair loss. I've

been on TRT for most of 6 years without hair loss. In fact my hair seems more

full. But everyone's different.

Why not try TRT long enough until you see results? You can then make a

better decision on trading its benefits for potential risks.

Best regards,

Bruce

>

> Just getting started with my replacement therapy, just got a 5th

> shot today. The first four shots was 200mg. but today the doctor ask

> how was I doing and I said not good yet, so he up it to 300mgs. every

> two weeks. I told him that i was really worried about hair loss and

> had been taking propecia to help with this. He said I should stop

> taking the propecia because it was doing more harm than good. What

> can I do now? He had little knowledge about what to do. He said try

> rogaine. Has anyone else been in my shoes? If so what are you doing?

> Also is anyone else losing hair because of their testosterone

> replacemenrt. Thanks for any help. Also if I `m going to lose alot of

> hair because of this is the whole thing worth it.

[Guest guest]

Hi - I am on HRT - 9 years now. First 5 were T cypionate, then a PLO cream,

now a gel. Hair loss started for me 2 years ago, after being on the gel for

a year or two. My DHT is through the roof, although I don't know for sure

what it was before. I am trying natural remedies and am researching other

options. I have read that a little added progesterone to the gel can help,

but I have not gone there yet. I am getting my blood levels again tomorrow

and will assess from there.

Drake

Need Help

>

>

> Just getting started with my replacement therapy, just got a 5th

> shot today. The first four shots was 200mg. but today the doctor ask

> how was I doing and I said not good yet, so he up it to 300mgs. every

> two weeks. I told him that i was really worried about hair loss and

> had been taking propecia to help with this. He said I should stop

> taking the propecia because it was doing more harm than good. What

> can I do now? He had little knowledge about what to do. He said try

> rogaine. Has anyone else been in my shoes? If so what are you doing?

> Also is anyone else losing hair because of their testosterone

> replacemenrt. Thanks for any help. Also if I `m going to lose alot of

> hair because of this is the whole thing worth it.

>

>

>

>

>

>

>

>

[Guest guest]

> I told him that i was really worried about hair loss and

had been taking propecia to help with this.

I know first hand that taking Propecia while on T injections will NOT

stop hair loss. How old are you, how long did you use Propecia for

and did you try anything like Clomid and/or HCG before going to T shots ?

> Just getting started with my replacement therapy, just got a 5th

> shot today. The first four shots was 200mg. but today the doctor ask

> how was I doing and I said not good yet, so he up it to 300mgs. every

> two weeks. I told him that i was really worried about hair loss and

> had been taking propecia to help with this. He said I should stop

> taking the propecia because it was doing more harm than good. What

> can I do now? He had little knowledge about what to do. He said try

> rogaine. Has anyone else been in my shoes? If so what are you doing?

> Also is anyone else losing hair because of their testosterone

> replacemenrt. Thanks for any help. Also if I `m going to lose alot of

> hair because of this is the whole thing worth it.

[Guest guest]

hello I just got in from my doc getting a 300mg shot he upped the 200 as it was

not working but he wants me to go 3 weeks how are you doing

Need Help

Just getting started with my replacement therapy, just got a 5th

shot today. The first four shots was 200mg. but today the doctor ask

how was I doing and I said not good yet, so he up it to 300mgs. every

two weeks. I told him that i was really worried about hair loss and

had been taking propecia to help with this. He said I should stop

taking the propecia because it was doing more harm than good. What

can I do now? He had little knowledge about what to do. He said try

rogaine. Has anyone else been in my shoes? If so what are you doing?

Also is anyone else losing hair because of their testosterone

replacemenrt. Thanks for any help. Also if I `m going to lose alot of

hair because of this is the whole thing worth it.