Doctors visit

[Guest guest]

Casaria..sorry to hear about the change in diagnosis..i mean allergies would

be a nicer diagnosis..but to have them keep changing it on you..i can only

imagine your confusion and the torment you are feeling. I hope that one of

the other 3 rheumatologist can give you an idea what is going on..If your

daughter is feeling that bad..why hasn't she been hospitalized and test ran

on her? When this all started they put her in the hospital right away to get

things started.

Maybe you can get in touch with a Shriners hospital..i know they help with

transportation if needed...I wish I could give you an idea on what to

do..but all I can say is hang in there and keep pushing..sounds like your

daughter has a great mother who will fight for her no matter what!!!

Good luck

karen(tab17..poly)

From: Casaria Tuttle <snickers4you_2000@...>

Reply-

Subject: Doctors Visit

Date: Mon, 1 Apr 2002 22:19:46 -0800 (PST)

Hello everyone,

Well todays doctor visit went horribly. I am so upset

right now. Just over a month ago the peds and I were

working with Still's in my daughter. Now they are

considering allergies. This is a pile of hoowey. I

can't believe this. How do they go from Still's and

possibly cancer to only allergies. I know in my heart

she isn't having allergies, and I also have a feeling

that the doctors are now afraid to commit to still's.

They keep all of the info I give them, don't say why

they are thinking something else, just come to me with

we aren't doing anything, let's go see another doc. I

am getting so unbelievably frustrated. The whole way

home from Portland today I cryed out of frusteration.

Why are they doing this to her, why are they making

her suffer when she shouldn't have to.

We won't quit fighting. We can't. She can't eat now,

she is losing control of her bladder, and walking is

quite a chore for her because she has no sense of

balance. I want to cry day and night right now

because I don't know what to do, and I hate watching

her cry and hurt.

If anyone has any idea where to go from here

please...I am open to any suggestion. We keep a

journal of everything that happens to her, I give the

docs all the info, and it just isnt' enough. I am

going to get in contact with three other ped rheumys

tomorrow. I don't know where that will get us, but it

can't be any worse than where we are now.

Love to you all, hope you are all doing well.

Love to all,

Casaria and Tasie

__________________________________________________

[Guest guest]

Casaria

what i would do

is carry her to the ER tell them this child cant continue this way without

help

and a proper doctor seeing her let the ER doctor make a report on her and

what he finds DO NOT GIVE UP

i myself will not take what the doctors say unless my heart feels that

and i will tell you this much JRA is a immune problem and with that comes

allergys

JRA plays such a role on a child

DEMAND to see the head doctor of the place your going to

each hospital has a chief of staff who is a doctor

if one doctor wants to do that to you raise cane with the one over that

doctor

wish you were closer Egleston childrens hospital is one of the best

go to the web site of one of the childrens hospitals and email the head one

and explain to that doctor its a EMERGENCY and leave your number

theres ways of getting attention to this problem

also your chapter of the arthritis foundation

this is rediculous that a doctor is doing this

get ALL labs done on the child from day one

xrays also

this will show the incompadence of that doctor

Robbin

[Guest guest]

Thanks ,

I am in touch with Shriners. She is supposed to be

going there for her clubfeet problems, but they have

since changed her appointment twice and now we have to

wait until late June to get it. I won't give up,

going to keep trying. Thanks so much. Wish you very

well.

Love to all,

Casaria and Tasie

__________________________________________________

[Guest guest]

Hi, Casaria. While I am sure your daughter has something more than just

allergies, you may be surprised at the fact she probably does have some. I

would think she should go also to an allergist and be tested. My son has

four different types of enviromental allergies. These have caused him to

develop asthma. He has had allergy problems since birth.Allergies can cause

so many different problems. The rhuemy he first saw said it is typical of

jra kids because they have hyper immune systems. The allergies, asthma, jra,

etc. are all proof of this. You are right to fight for a proper diagnosis. I

have always felt blessed because we have a wonderful pediatrician who

listens to my concerns and believes they are valid. I have never felt she

wasn't concerned about my kids and it definitely helps when you start seeing

a variety of drs to know you have at least one in your corner you can call

any time for support. Hopefully you will be able to get the medical support

you need. Good luck to you, Michele

Doctors Visit

Hello everyone,

Well todays doctor visit went horribly. I am so upset

right now. Just over a month ago the peds and I were

working with Still's in my daughter. Now they are

considering allergies. This is a pile of hoowey. I

can't believe this. How do they go from Still's and

possibly cancer to only allergies. I know in my heart

she isn't having allergies, and I also have a feeling

that the doctors are now afraid to commit to still's.

They keep all of the info I give them, don't say why

they are thinking something else, just come to me with

we aren't doing anything, let's go see another doc. I

am getting so unbelievably frustrated. The whole way

home from Portland today I cryed out of frusteration.

Why are they doing this to her, why are they making

her suffer when she shouldn't have to.

We won't quit fighting. We can't. She can't eat now,

she is losing control of her bladder, and walking is

quite a chore for her because she has no sense of

balance. I want to cry day and night right now

because I don't know what to do, and I hate watching

her cry and hurt.

If anyone has any idea where to go from here

please...I am open to any suggestion. We keep a

journal of everything that happens to her, I give the

docs all the info, and it just isnt' enough. I am

going to get in contact with three other ped rheumys

tomorrow. I don't know where that will get us, but it

can't be any worse than where we are now.

Love to you all, hope you are all doing well.

Love to all,

Casaria and Tasie

__________________________________________________

[Guest guest]

Darrell,

The last medication I was taking before I found out the " truth " of my

epilepsy was Lamictal. Before that I was on Tegretol. Before that, I

was on Dilantin. Before solely going on Dilatin, I was on both Dilantin

and Phenobarbital. Anyway, getting back to Lamictal, I was warned it

might cause a rash. But, that never happened to me. However, I was on

a very low dose.

If you are concerned about adverse side effects, I would not only

question your doctor, but see what you can learn from the Net. Do a

Goggle search for the " Drug Information Interaction Site. " That website

will not only give you information on adverse reactions from single

drugs, but drugs in combination with other drugs as well. I would also

seek second opinions from other doctors who treat epilepsy. Visit their

online websites. Many of those sites are listed in the Links area of

this group's website.

Good luck.

Lamar

dmccall wrote:

> Okay everyone I went to see an epileptologist yesterday and yes he

> prescribed some medication(LAMICTAL) starting dose of 25 mgs then

> working to 100 2x a day.Also I am going for an MRI and EEG on Tues to

> establish no physical damage. I have had 2 in the last 5 years and

> there was nothing. Well I am not certain as of yet of what I am going

> to do about taking Meds or not and if anyone has any experience with

> this particular med please let me know because I am in need of some

> support from everyone on what to do.I have read the side affects and

> it's scary as with all Meds.But I had another seizure last night while

> sleep Of course in my sleep. I ate a bunch of grapes before bed and I

> don't know if that along with a long day triggered the

> seizure(According to Dr.s Cure for all diseases) but I do know

> that having these gran mal's once a month is not going to work. I mean

> like I said I feel great the other days in-between and usually only a

> day or 2 afterwards do I feel the need to take any medicine.But my

> wife and family are now after 5 years of trying different holistic

> approaches thinking maybe I should try the meds to see if they

> help.WHAT DO U THINK?This Doctor had no other recourse except the

> meds.My concern is of course the side affects. are they noticeable to

> point that I will see a significant change in my well being from

> taking the meds over time. Is that too much to ask for ?Please anyone

> with some helpful experiences or advice.Anyway does anyone have any

> positive stories.Thanks guys.

> Darrell

>

>

[Guest guest]

Thanks Lamar I have investigated the drug earlier and like you said the rash

was the major warning, So after a while of taking this med did you adjust to

it where you didn't feel it. Or was it a nightmare.Like I said although the

off days are so much better I just don't know what else to do.I am juicing

daily green juices, Calcium, mag,taurine,bcomplex all 1000mgs daily a gallon

of water or close a day no red meat and exercise.herbs lobelia skunk cabbage

Echinacea golden seal wormwood breathing Damn that's a lot huh. lol.anyway

thanks for the insight

Re: [ ] Doctors visit

> Darrell,

>

> The last medication I was taking before I found out the " truth " of my

> epilepsy was Lamictal. Before that I was on Tegretol. Before that, I

> was on Dilantin. Before solely going on Dilatin, I was on both Dilantin

> and Phenobarbital. Anyway, getting back to Lamictal, I was warned it

> might cause a rash. But, that never happened to me. However, I was on

> a very low dose.

>

> If you are concerned about adverse side effects, I would not only

> question your doctor, but see what you can learn from the Net. Do a

> Goggle search for the " Drug Information Interaction Site. " That website

> will not only give you information on adverse reactions from single

> drugs, but drugs in combination with other drugs as well. I would also

> seek second opinions from other doctors who treat epilepsy. Visit their

> online websites. Many of those sites are listed in the Links area of

> this group's website.

>

> Good luck.

>

> Lamar

>

>

> dmccall wrote:

>

> > Okay everyone I went to see an epileptologist yesterday and yes he

> > prescribed some medication(LAMICTAL) starting dose of 25 mgs then

> > working to 100 2x a day.Also I am going for an MRI and EEG on Tues to

> > establish no physical damage. I have had 2 in the last 5 years and

> > there was nothing. Well I am not certain as of yet of what I am going

> > to do about taking Meds or not and if anyone has any experience with

> > this particular med please let me know because I am in need of some

> > support from everyone on what to do.I have read the side affects and

> > it's scary as with all Meds.But I had another seizure last night while

> > sleep Of course in my sleep. I ate a bunch of grapes before bed and I

> > don't know if that along with a long day triggered the

> > seizure(According to Dr.s Cure for all diseases) but I do know

> > that having these gran mal's once a month is not going to work. I mean

> > like I said I feel great the other days in-between and usually only a

> > day or 2 afterwards do I feel the need to take any medicine.But my

> > wife and family are now after 5 years of trying different holistic

> > approaches thinking maybe I should try the meds to see if they

> > help.WHAT DO U THINK?This Doctor had no other recourse except the

> > meds.My concern is of course the side affects. are they noticeable to

> > point that I will see a significant change in my well being from

> > taking the meds over time. Is that too much to ask for ?Please anyone

> > with some helpful experiences or advice.Anyway does anyone have any

> > positive stories.Thanks guys.

> > Darrell

> >

> >

[Guest guest]

Darrell:

I can see that you are very undecided about started medications. The

decision has to be yours, obviously, but I'd like to give you my thoughts if

I may.

Not all people will experience side effects. The severity of side effects

can vary drastically between different people. You have to decide on your

quality of life. And if starting a medication may improve your quality of

life then you can give it a shot. You can always stop a medication if you

find your quality of life has not improved (don't stop without a doctor's

guidance, though). I recommend you keep a diary of your feelings (physical

and emotional) which may help you decide whether you're being helped by any

med you do try.

Good luck in your decision.

>From: " dmccall " <dmccall3@...>

>Date: Thu, 22 May 2003 19:57:07 -0700

>

>Okay everyone I went to see an epileptologist yesterday and yes he

>prescribed some medication(LAMICTAL) starting dose of 25 mgs then working

>to 100 2x a day.Also I am going for an MRI and EEG on Tues to establish no

>physical damage. I have had 2 in the last 5 years and there was nothing.

>Well I am not certain as of yet of what I am going to do about taking Meds

>or not and if anyone has any experience with this particular med please let

>me know because I am in need of some support from everyone on what to do.I

>have read the side affects and it's scary as with all Meds.But I had

>another seizure last night while sleep Of course in my sleep. I ate a bunch

>of grapes before bed and I don't know if that along with a long day

>triggered the seizure(According to Dr.s Cure for all diseases) but I

>do know that having these gran mal's once a month is not going to work. I

>mean like I said I feel great the other days in-between and usually only a

>day or 2 afterwards do I feel the need to take any medicine.But my wife and

>family are now after 5 years of trying different holistic approaches

>thinking maybe I should try the meds to see if they help.WHAT DO U

>THINK?This Doctor had no other recourse except the meds.My concern is of

>course the side affects. are they noticeable to point that I will see a

>significant change in my well being from taking the meds over time. Is that

>too much to ask for ?Please anyone with some helpful experiences or

>advice.Anyway does anyone have any positive stories.Thanks guys.

>Darrell

_________________________________________________________________

Help STOP SPAM with the new MSN 8 and get 2 months FREE*

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[Guest guest]

Thanks for the good advice.I will certainly try and make a decision

soon. I have to if you know what I mean.Still having to maintain a job and

struggle with other things seems to just add to the weight.But it has to get

better is what I keep telling myself. Okay thanks once again and peace to u.

Re: [ ] Doctors visit

> Darrell:

> I can see that you are very undecided about started medications. The

> decision has to be yours, obviously, but I'd like to give you my thoughts

if

> I may.

>

> Not all people will experience side effects. The severity of side effects

> can vary drastically between different people. You have to decide on your

> quality of life. And if starting a medication may improve your quality of

> life then you can give it a shot. You can always stop a medication if you

> find your quality of life has not improved (don't stop without a doctor's

> guidance, though). I recommend you keep a diary of your feelings

(physical

> and emotional) which may help you decide whether you're being helped by

any

> med you do try.

>

> Good luck in your decision.

>

>

>

> >From: " dmccall " <dmccall3@...>

> >Date: Thu, 22 May 2003 19:57:07 -0700

> >

> >Okay everyone I went to see an epileptologist yesterday and yes he

> >prescribed some medication(LAMICTAL) starting dose of 25 mgs then working

> >to 100 2x a day.Also I am going for an MRI and EEG on Tues to establish

no

> >physical damage. I have had 2 in the last 5 years and there was nothing.

> >Well I am not certain as of yet of what I am going to do about taking

Meds

> >or not and if anyone has any experience with this particular med please

let

> >me know because I am in need of some support from everyone on what to

do.I

> >have read the side affects and it's scary as with all Meds.But I had

> >another seizure last night while sleep Of course in my sleep. I ate a

bunch

> >of grapes before bed and I don't know if that along with a long day

> >triggered the seizure(According to Dr.s Cure for all diseases) but I

> >do know that having these gran mal's once a month is not going to work. I

> >mean like I said I feel great the other days in-between and usually only

a

> >day or 2 afterwards do I feel the need to take any medicine.But my wife

and

> >family are now after 5 years of trying different holistic approaches

> >thinking maybe I should try the meds to see if they help.WHAT DO U

> >THINK?This Doctor had no other recourse except the meds.My concern is of

> >course the side affects. are they noticeable to point that I will see a

> >significant change in my well being from taking the meds over time. Is

that

> >too much to ask for ?Please anyone with some helpful experiences or

> >advice.Anyway does anyone have any positive stories.Thanks guys.

> >Darrell

>

> _________________________________________________________________

> Help STOP SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

>

>

>

>

[Guest guest]

Darrell,

Obviously, if you are taking Lamictal, a doctor prescribed it for you.

You should be drilling your doctor about the medicine he says you need.

If the doctor is not responsive to your questions in a way that

satisfies you, I would definitely seek a second opinion from another

qualified doctor. That does not necessarily mean you have make another

in-person appointment before you learn anything. Instead, use the

Internet to help gather helpful information that is specific to your

situation. Do this first before you make arrangements to see another

doctor.

Rather than being the one who is pushed and shoved from place-to-place,

doctor-to-doctor, turn the tables for the benefit of your own health.

For example, since your current doctor has your medical records, ask him

to send those records to another doctor for a second opinion. Your

doctor should be willing to do that for you for free. I have actually

done this without any problem. If you need to find a good doctor worth

sending your records to, check out the American Academy of Neurology.

It should be listed in the Links area of this group's website.

Also, I would check out my favorite website for information on epilepsy

- s-Reiter .

Hope this helps.

Lamar

dmccall wrote:

> Thanks Lamar I have investigated the drug earlier and like you said

> the rash

> was the major warning, So after a while of taking this med did you

> adjust to

> it where you didn't feel it. Or was it a nightmare.Like I said

> although the

> off days are so much better I just don't know what else to do.I am

> juicing

> daily green juices, Calcium, mag,taurine,bcomplex all 1000mgs daily a

> gallon

> of water or close a day no red meat and exercise.herbs lobelia skunk

> cabbage

> Echinacea golden seal wormwood breathing Damn that's a lot huh.

> lol.anyway

> thanks for the insight

[Guest guest]

Well the whole idea of me not jumping right onto the medication bandwagon

helps prove the fact that I am not being pushed around from doctor to

doctor.What I have been doing is trying to help myself with good results

with this seizure disorder, but now as I have stated these seizures are

still attacking me in my sleep.As most of us can tell from our own

experiences it's not so much the seizure itself that is soooo damaging. It

is the shift in reality or normal feeling that makes it unbearable

afterwards.I have called and talked to Dr. yesterday and I am going to

get out there to see her next month if all goes well. This is before I start

on the medicine. I hope it is the right way to go. But I do have to try

without the meds first if I can.Thanks Lamar for the insight and support.

Darrell

Re: [ ] Doctors visit

> Darrell,

>

> Obviously, if you are taking Lamictal, a doctor prescribed it for you.

> You should be drilling your doctor about the medicine he says you need.

> If the doctor is not responsive to your questions in a way that

> satisfies you, I would definitely seek a second opinion from another

> qualified doctor. That does not necessarily mean you have make another

> in-person appointment before you learn anything. Instead, use the

> Internet to help gather helpful information that is specific to your

> situation. Do this first before you make arrangements to see another

> doctor.

>

> Rather than being the one who is pushed and shoved from place-to-place,

> doctor-to-doctor, turn the tables for the benefit of your own health.

> For example, since your current doctor has your medical records, ask him

> to send those records to another doctor for a second opinion. Your

> doctor should be willing to do that for you for free. I have actually

> done this without any problem. If you need to find a good doctor worth

> sending your records to, check out the American Academy of Neurology.

> It should be listed in the Links area of this group's website.

> Also, I would check out my favorite website for information on epilepsy

> - s-Reiter .

>

> Hope this helps.

>

> Lamar

>

>

> dmccall wrote:

>

> > Thanks Lamar I have investigated the drug earlier and like you said

> > the rash

> > was the major warning, So after a while of taking this med did you

> > adjust to

> > it where you didn't feel it. Or was it a nightmare.Like I said

> > although the

> > off days are so much better I just don't know what else to do.I am

> > juicing

> > daily green juices, Calcium, mag,taurine,bcomplex all 1000mgs daily a

> > gallon

> > of water or close a day no red meat and exercise.herbs lobelia skunk

> > cabbage

> > Echinacea golden seal wormwood breathing Damn that's a lot huh.

> > lol.anyway

> > thanks for the insight

>

>

>

[Guest guest]

When you say the truth about your seizures are you speaking from Dr.s.

And when you were on the multiple medicines did you gain control over your

seizures. and yes I have been up and down the internet on affects of AED's

which is why for 5 years now I have been reluctant to take any.

Re: [ ] Doctors visit

> Darrell,

>

> The last medication I was taking before I found out the " truth " of my

> epilepsy was Lamictal. Before that I was on Tegretol. Before that, I

> was on Dilantin. Before solely going on Dilatin, I was on both Dilantin

> and Phenobarbital. Anyway, getting back to Lamictal, I was warned it

> might cause a rash. But, that never happened to me. However, I was on

> a very low dose.

>

> If you are concerned about adverse side effects, I would not only

> question your doctor, but see what you can learn from the Net. Do a

> Goggle search for the " Drug Information Interaction Site. " That website

> will not only give you information on adverse reactions from single

> drugs, but drugs in combination with other drugs as well. I would also

> seek second opinions from other doctors who treat epilepsy. Visit their

> online websites. Many of those sites are listed in the Links area of

> this group's website.

>

> Good luck.

>

> Lamar

>

>

> dmccall wrote:

>

> > Okay everyone I went to see an epileptologist yesterday and yes he

> > prescribed some medication(LAMICTAL) starting dose of 25 mgs then

> > working to 100 2x a day.Also I am going for an MRI and EEG on Tues to

> > establish no physical damage. I have had 2 in the last 5 years and

> > there was nothing. Well I am not certain as of yet of what I am going

> > to do about taking Meds or not and if anyone has any experience with

> > this particular med please let me know because I am in need of some

> > support from everyone on what to do.I have read the side affects and

> > it's scary as with all Meds.But I had another seizure last night while

> > sleep Of course in my sleep. I ate a bunch of grapes before bed and I

> > don't know if that along with a long day triggered the

> > seizure(According to Dr.s Cure for all diseases) but I do know

> > that having these gran mal's once a month is not going to work. I mean

> > like I said I feel great the other days in-between and usually only a

> > day or 2 afterwards do I feel the need to take any medicine.But my

> > wife and family are now after 5 years of trying different holistic

> > approaches thinking maybe I should try the meds to see if they

> > help.WHAT DO U THINK?This Doctor had no other recourse except the

> > meds.My concern is of course the side affects. are they noticeable to

> > point that I will see a significant change in my well being from

> > taking the meds over time. Is that too much to ask for ?Please anyone

> > with some helpful experiences or advice.Anyway does anyone have any

> > positive stories.Thanks guys.

> > Darrell

> >

> >

[Guest guest]

Darrell,

You are most welcome. It does make a difference to share your situation

with doctors who are willing to take the time to listen to what you have

to say. And, if the communication can begin with an e-mail, why not

take advantage of it? That's one of the great things about Internet

communication. The Internet makes it possible for people to contact

doctors and get qualified second opinions BEFORE going in for an actual

appointment.

I wish you the best with your upcoming doctor's appointment.

Lamar

dmccall wrote:

> Well the whole idea of me not jumping right onto the medication

> bandwagon

> helps prove the fact that I am not being pushed around from doctor to

> doctor.What I have been doing is trying to help myself with good

> results

> with this seizure disorder, but now as I have stated these seizures

> are

> still attacking me in my sleep.As most of us can tell from our own

> experiences it's not so much the seizure itself that is soooo

> damaging. It

> is the shift in reality or normal feeling that makes it unbearable

> afterwards.I have called and talked to Dr. yesterday and I am

> going to

> get out there to see her next month if all goes well. This is before I

> start

> on the medicine. I hope it is the right way to go. But I do have to

> try

> without the meds first if I can.Thanks Lamar for the insight and

> support.

> Darrell

[Guest guest]

Darrell,

My life on prescription medication began when I was a junior in high

school and continued until I was 50 years old. During all those years I

was one numerous medications - beginning with Dilantin & Phenobarbital,

then just Dilantin. Then, I was taken off Dilantin and placed on

Tegretol. When I was taken off Tegretol I was placed on Lamictal. Less

than three years ago - thanks to an e-mail from someone on this very

group - I was introduced to the s-Reiter Clinic (Dr.

s). For the last two years I have been drug-free and still have

my seizure disorder under control. As proof, since becoming drug-free,

I have only encountered two seizures. Both occurred during my sleep.

Both were the result of not getting adequate sleep - not because I was

off medication. In my particular situation, getting rid of some bad

habits (like inadequate sleep on a regular basis) has proved extremely

beneficial.

Lamar

dmccall wrote:

> When you say the truth about your seizures are you speaking from

> Dr.s.

> And when you were on the multiple medicines did you gain control over

> your

> seizures. and yes I have been up and down the internet on affects of

> AED's

> which is why for 5 years now I have been reluctant to take any.

[Guest guest]

In einer eMail vom 25.05.03 20:22:48 (MEZ) - Mitteleurop. Sommerzeit schreibt

dmccall3@...:

> I have called and talked to Dr. yesterday and I am going to

> get out there to see her next month if all goes well. This is before I start

> on the medicine. I hope it is the right way to go. But I do have to try

> without the meds first if I can.Thanks Lamar for the insight and support.

> Darrell

>

Darrell, I am so glad for you. With Donna s treating you , you have a

good chance to become seizure free without meds or with a diminishing amount of

meds.

Happy to hear this!

Katharina

[Guest guest]

Mike:

Have you heard of this guy? He's an MD and an osteopath. Maybe he

can help with your diagnosis:

Healow, G. MD

2501 4th Ave., North, Ste. C

Billings, MT 59102-4317

406-252-6674 (phone)

406-698-2587 (fax)

I found him on the http://www.aaomed.org site.

HTH,

Doug

> I saw my new OS today, and I was impressed with his attention to me

and my

> condition. He said I have a type of arthritis of the kneecap they

only see

> at their office about once every two or three years. He gave me

many

> options but for now he was troubled by the muscle spasms in my

legs. He

> thinks they might not be related to the arthritis, and wants to try

and

> figure out what they are first before going further with my knees.

He took

> a set of x-rays of my knees and back (nerve damage?) but didn't see

anything

> wrong with the back on the x-rays. He wants me to try quinine for

now to

> see if that will quell the spasms (chemical imbalance?), but if

not, he

> wants to do a back MRI. He said it looks like I should have an

adequate gap

> behind my kneecaps, but he can see where there are arthritic cysts

forming.

> As I said, he wants to leave all our options open for now, but in

my case he

> is leaning towards Hyaluronic acid injections with possible

tubercleplasty

> if that doesn't help.

>

> Mike

> MT

[Guest guest]

Re: Doctors visit

> Mike:

>

> Have you heard of this guy? He's an MD and an osteopath. Maybe he

> can help with your diagnosis:

>

> Healow, G. MD

> 2501 4th Ave., North, Ste. C

> Billings, MT 59102-4317

> 406-252-6674 (phone)

> 406-698-2587 (fax)

>

> I found him on the http://www.aaomed.org site.

He is someone I am considering due to some of the prolotherapy info on the

internet.

Mike

MT

[Guest guest]

I was diagnosed with the same thing today. The doctor asked me if I

wanted to do therapy or if I wanted MRI/surgery. I didn't know what

to say. I picked the therapy. I am not sure what else is there to do.

Years ago I had a surgery on my right knee for torn legament. I

thought this was similar/related. I have always had problems running

or walking downhill.

[Guest guest]

I would definitely try PT before surgery. If you aren't happy with the PT

person you get --if you feel they don't really understand your pain -- ask for a

different one. I've seen many PT people, and they've ranged from arrogant but

ignorant, to wonderful.

Ann

Re: Doctors visit

I was diagnosed with the same thing today. The doctor asked me if I

wanted to do therapy or if I wanted MRI/surgery. I didn't know what

to say. I picked the therapy. I am not sure what else is there to do.

Years ago I had a surgery on my right knee for torn legament. I

thought this was similar/related. I have always had problems running

or walking downhill.

[Guest guest]

I went to a new doctor today. Long story short, he didn't know much. I said I

was fine with my TSH being 1.1 but I was concerned because my recent labs showed

that my T3 total (not free T3) was out of the normal range. It is 83 (normal

range 97-186). I know that it isn't the same as free T3 but that has to be an

indicator of a T4/T3 conversion problem right? Well he said it wasn't but he

said he would prescribe me Armour anyway because it doesn't make a difference to

him and he said it is just a different brand name of synthroid. I was thinking

to myself " umm okay not really " but I was so thrilled to have found a doctor who

would prescribe it I didn't say anything. So then he asks me what dose of

levothyroxine I'm on and I said 75 mcg so he writes the prescription, I look at

it and it says " Armour Thyroid 0.075 mg " . My jaw like dropped. I was like " oh,

well Armour's range is different than Synthroid. " I was like " It would have to

be a much much higher dose to have the same equivalency " . He said that wasn't

true. I nearly fell over, seriously. So I went to the pharmacy, talked to the

pharmacist who had to call the doctor and explain the scale of Armour and he

prescribed me 60 mg of Armour, which I guess ended up being the right amount but

man oh man I had to pull teeth to get it. So here I am not really sure how to

proceed ... I clearly couldn't ask my doc. Has anyone had any luck making the

synthroid/armour transition without feeling really hypo? I've heard some people

keep taking their synthroid for like two weeks in addition to the armour so as

not to feel really crumby? Or is that just plain dangerous? Any sugestions would

be great.

PS I demanded a Ferritin test and a Free T3 test. I asked to get my adrenals

testes but he wouldn't do that one. The doctor said " you're worse than my

daughter " . I was like " Good! " and he laughed :-)

________________________________________________________________________

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at AOL.com.

[Guest guest]

,

You wrote:

> ... I've heard some

> people keep taking their synthroid for like two weeks in addition to the

> armour so as not to feel really crumby? Or is that just plain dangerous?

If you are euthyroid (treated) and stop taking Synthroid, in one week

the T4 level will be down to 1/2. So, stop the Synthroid but introduce

the Armour gradually so that you are at about 1/2 of the full dose in a

week and 3/4 of full dose at two weeks.

Chuck

[Guest guest]

60mg Armour is way too low. this doc is scary. Usual dose of Armour is

180-300mg. youcan order your own meds from the net too. order your own tests

too.

Gracia

I went to a new doctor today. Long story short, he didn't know much. I said I

was fine with my TSH being 1.1 but I was concerned because my recent labs showed

that my T3 total (not free T3) was out of the normal range. It is 83 (normal

range 97-186). I know that it isn't the same as free T3 but that has to be an

indicator of a T4/T3 conversion problem right? Well he said it wasn't but he

said he would prescribe me Armour anyway because it doesn't make a difference to

him and he said it is just a different brand name of synthroid. I was thinking

to myself " umm okay not really " but I was so thrilled to have found a doctor who

would prescribe it I didn't say anything. So then he asks me what dose of

levothyroxine I'm on and I said 75 mcg so he writes the prescription, I look at

it and it says " Armour Thyroid 0.075 mg " . My jaw like dropped. I was like " oh,

well Armour's range is different than Synthroid. " I was like " It would have to

be a much much higher dose t have the same equivalency " . He said that wasn't

true. I nearly fell over, seriously. So I went to the pharmacy, talked to the

pharmacist who had to call the doctor and explain the scale of Armour and he

prescribed me 60 mg of Armour, which I guess ended up being the right amount but

man oh man I had to pull teeth to get it. So here I am not really sure how to

proceed ... I clearly couldn't ask my doc. Has anyone had any luck making the

synthroid/armour transition without feeling really hypo? I've heard some people

keep taking their synthroid for like two weeks in addition to the armour so as

not to feel really crumby? Or is that just plain dangerous? Any sugestions would

be great.

PS I demanded a Ferritin test and a Free T3 test. I asked to get my adrenals

testes but he wouldn't do that one. The doctor said " you're worse than my

daughter " . I was like " Good! " and he laughed :-)

__________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from

AOL at AOL.com.

[Guest guest]

Hi Judy

Since is a diagnosis of exclusion, your doctor is right to suspect and

test for some of the genetic syndromes first. It's a shame he didn't explain

them to you though. Our daughter Emma was also suspected to have HIDS first

(TRAPS and FMF didn't fit her profile) and we ruled it out before getting the

diagnosis.

Hope this helps

Take care

Inga, mom of Emma, 26 months, fevering since she was 11 months.

[Guest guest]

Thanks for the info Inga. I hope that he will explain a little more on

our next visit in December.

[Guest guest]

Hi Judy,

Our son Grant was diagnosed with TRAPS when he was 5 months old. While I'm not

as

familiar with FMF, I can help you understand what to look for with TRAPS.

Generally, your

child will have fevers regularly. Most people on this site will say they can

predict when an

episode is coming. Keeping a fever log will help you see a pattern and this may

be why

your doctor has asked you to keep one. Our son had fever lasting nearly 2 weeks

every

month his first year of life. It has since dropped to about every 2 or 2.5

months. A very

serious condition associated with some TRAPS mutations is ammyloidosis (sp?).

This can

be detected by checking for protein in urine. We are very fortunate that

Grant's mutation

has a low risk for developing these but he still has a UA every 6 months (as

does my

husband who also has TRAPS). I recommend looking up what little info. there is

relating to

the fever conditions your doctor suspects to help you see which fits best. As

far as TRAPS,

my husband and son have similar symptoms: red eye (looks like they need sleep)

painful

but not swollen, Grant will complain of stomach and scrotal pain when he is

fevering and

Tim has a general achy flu feeling and joint pain. Grant occasionally (3 times

in 3 years)

has a serpent like rash on his torso or neck and it will move down his arms as

his fever

progresses. However, Tim's rash usually begins at his shoulder or thigh area

and migrates

down his arm or leg. His rash is a raised, oval shaped patch that seems to have

a fever of

its own and is very painful to the touch. Other adult TRAPS patients we've

spoken with

have said their rash was serpent-like when they were young but changed to the

rounder

shape and warm feeling when they got older. Also, our first medical

recomendation was

to take ibuprofen (anti-inflammatory) only (no Tylenol) since TRAPS is an

inflammatory

syndrome.

We did see an Infectious Disease doctor for Tim before Grant was born. He at

one point

suspected FMF but ruled it out - he never mentioned TRAPS. We were ultimately

left with

the " Fever of Unknown Origen " diagnosis. If you are still left without answers

once your

test results come back, I would suggest you see a pediatric rhumetologist.

Since one of

the main symptoms of TRAPS is joint pain most patients are referred to a

rhumetologist;

therefore, they may be more familiar with Mia's symptoms. We ultimately found

out what

Tim had when Grant was born. He had been in the hospital (3months old) with

fever for a

week when they moved us to Texas Chilren's. While we were there a young doctor

asked if

anyone else had " fevers " . Tim's symptoms led to the suspision of TRAPS and

later the

genetic testing of Grant. Can you believe we hadn't put 2 and 2 together before

that!

I hope some of this has helped and I hope you can find some answers to Mia's

fevers.

Take Care,

Leonard

Grant (3yo) TRAPS since birth

Husband Tim (34yo) TRAPS since 3 yo

[Guest guest]

,

I am so sorry that your baby has had to go through all this. I feel bad for

my Mia too. Poor thing has gone through test after test. I will definitely try

finding a good Rheumatologist and see if they could do something about Mia's

condition. I understand that there is good Docs at Shands Hospital in

Gainesville, Fl. If I don't get any answer from Mia's ID then I am moving on to

the next doc that can. I feel bad she has to go through these testing but we are

determined to find what it is that is wrong. Thanks for all the info .

Good Luck with your son.

Mia (4yo) fevers of unknown origin

Judy