RE: Confused

[Guest guest]

You are just going to have to see the doc and get labs. Thankfully

Monday is close.

[Guest guest]

I hope your doc will run Free T3 and Free T4, not just TSH. There are many of us who cannot get out of bed with any measurable TSH at all. Why was your thyroid removed? wilson13_2000 wrote: I am going to my thyroid doc on Monday (after not having been for about a year). I am concerned that something is not right, but don't know exactly what it is. I have been on 3 Grains of Armour since November of 2005 and my last TSH was .75. I know some docs

wouldn't let me stay at that number, but I felt lousy at so-called normal numbers. I cannot remember my other numbers (T3, etc.). After feeling great for months, I now feel tired again (the tired that comes from being hypo - bone tired) and am starting to need to nap sometimes. Also, I have been on Weight Watchers for a few months and have managed to lose 19.6 lbs, but that has slowed down dramatically and I have a long way to go. I always eat fiber at my meals to combat blood sugar issues. Does anybody have any suggestions if I may be over or undermedicated? I have heart palpatations very rarely (actually less since I have been on Armour) and my thyroid was removed in April 2005. I am starting to feel like I did when I before I was diagnosed and docs were saying nothing was wrong with me! I would appreciate your comments!

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Thank you for suggesting which test I should ask for

doc for. I felt so well for a while that I have kind

of gotten away from remembering all this stuff and I

needed that reminder.

My thyroid was removed in April of 2004 (I mistakenly

typed 2005) because the biopsy on a large nodule came

back as inconclusive for cancer. My aunt had thyroid

cancer at my age so I decided to have it out. I have

Hashi's and have read that antibodies take years to

start decreasing - but I am wondering if it has been

two years since surgery maybe my antibodies are a

little less and that is causing me to be

overmedicated.

I had an MRI for my back and neck a while back and had

to be sedated due to extreme claustrophobia. The

nurse that watched over me while under sedation said

my blood pressure went down very quickly after giving

me the IV, but my heart rate never decreased.

Thanks for your help with this! I wanted to have as

much info. as possible when I go to the doc. She is

great, but I want to be prepared when I go in.

--- Jan wrote:

> I hope your doc will run Free T3 and Free T4, not

> just TSH.

>

> There are many of us who cannot get out of bed

> with any measurable TSH at all.

>

> Why was your thyroid removed?

>

> wilson13_2000 wrote:

> I am going to my thyroid doc on Monday (after not

> having been for about

> a year). I am concerned that something is not

> right, but don't know

> exactly what it is. I have been on 3 Grains of

> Armour since November

> of 2005 and my last TSH was .75. I know some docs

> wouldn't let me stay

> at that number, but I felt lousy at so-called normal

> numbers. I cannot

> remember my other numbers (T3, etc.). After feeling

> great for months,

> I now feel tired again (the tired that comes from

> being hypo - bone

> tired) and am starting to need to nap sometimes.

> Also, I have been on

> Weight Watchers for a few months and have managed to

> lose 19.6 lbs, but

> that has slowed down dramatically and I have a long

> way to go. I

> always eat fiber at my meals to combat blood sugar

> issues. Does

> anybody have any suggestions if I may be over or

> undermedicated? I

> have heart palpatations very rarely (actually less

> since I have been on

> Armour) and my thyroid was removed in April 2005. I

> am starting to

> feel like I did when I before I was diagnosed and

> docs were saying

> nothing was wrong with me! I would appreciate your

> comments!

>

> ---------------------------------

> Yahoo! Messenger with Voice. PC-to-Phone calls for

> ridiculously low rates.

[Guest guest]

Hey Katy;

I can certainly relate to how you feel.....nearly everything about this blasted

disease is confusing...it is my experience that the test results don't often

match the symptoms....one reason the disease is so difficult to diagnose..BUT,

stick to what you know....you know what you are feeling and what your body is

telling you....don't waver....the meds produce their own effects and then Sir

Still's loves to dance around.....put them together and sometimes it is who the

hell knows!?....for example, I have had both hips replaced in the last

year.....should not be any joint pain there right? Weeeeeeellll,

So far today I have taken 110mg of Oxycodone and 15 mg of Vicadin for PAIN in

the LEFT hip and left MID FEMUR....it hurts sooooooo bad that if it doesn't stop

soon I am going to head for the ER.....anyway, that's just one mystery......we

must be our own advocate and please don't allow anyone to steer you away from

what YOU know.....hang in there....God Bless!

Larry from NC

Confused

Hello all,

Welcome to all the new members.I posted a while ago about going into

hospital for a week of IV immunoglobulin. Well, I went for that and it

made me feel dreadful at the time but I did manage to get most of it

into me. Unfortunately though it hasn't made a huge amount of

difference as yet but I'm still ever hopeful.I had a bone scan done

about a month ago. It was a nuclear medicine one where they put a bit

of radioactive dye in you prior to the scan. Mine showed up lots

of 'hotspots' ie abnormal uptake of the dye, particularly in my hands.

I've now got to have an MRI scan of my hands to see what

these 'hotspots' are.

Anyway, while I was in there, they decided to take me off all my meds

except the steroids which I'm reducing by 5mg every 2 weeks (currently

on 35mg). They've stopped the MTX and the humira and plaquenil. They

decided that they were potentially doing more harm than good. I'm

managing on the pred at the moment but as the dose gets less and less,

what am I going to do?

They also had an issue with my ESR (sed rate). It's not currently

raised at all so they can't understand why I've still got the swelling,

pain and fevers etc and this has contributed to their decision to take

the meds away. The thing is, apart from my initial flare up, I've never

had a particularly high ESR but was told that this isn't uncommon in

Stills. My white count zooms up every time and is much more an

indicator for me. They've given me meds for the last 2 years based on

the state I've been in so I'm confused as to why they're suddenly

making an issue of the blood results. I feel like they don't believe

the level of pain I'm in because it can't be proved with a lab result.

What can I do? They've got photos of my joints, photos of my rashes,

temp charts coming out of their ears but that's not enough. The docs

are saying my level of pain doesn't match the results. My joints are

really sore but I'm actually much more likely to play it down than

exagerate how much it hurts (which I feel is what they're implying).I

feel so disheartened.

I've just got to wait for the MRI scan now. The docs are hoping to

induce a big flare up by taking away the meds so they get a good view

of any inflammation on the scan.

Sorry this is so long and rambling......thank you for sticking with it.

Best wishes to all

Kate (UK)

[Guest guest]

,

My son was perfectly normal at age three also. The only way he was affected was

a barely noticeable weakness in his right hand. The severity of symptoms can

vary greatly depending on the amount of the brain affected and the location

within the brain. My son has unilateral PMG on the left side primarily in the

occipital and parietal lobes. This means he has one completely normal

hemisphere. This is the reason why he is so mildly affected. It sounds like your

daughter is very similar to my son being affected only in the left hemisphere.

Hope that helps.

-Steve

>

> Subject: Confused

> To: polymicrogyria

> Date: Monday, January 12, 2009, 4:02 PM

> Hi my name is Prutchick and im a little confused

> about all of

> this PMG. I have alot of unanswered questions and the

> doctors dont

> seem to know how to answer them . My daughter is 3yrs old

> and was

> just daignosed with PMG,Septic Optic Nerve Dysplasia she

> has glasses

> and is going to need surgery to correct her eyes. I just

> dont

> understand she acts like a normal child she is a little

> hyper and is

> defient but what 3 yr old isn't ..lol I guess what

> i'm trying to say

> is i m reading all these stories that everyone has posted

> and these

> poor children seem so much worse than mine. They said that

> the left

> side of her brain was effected Im wondering if there are

> any parents

> out there that have children with PMG that act like a

> normal child.

> She has come a long way in the last year she was a little

> behind

> before but she has caught up and does everything a normal 3

> yr old

> does .. any input would be nice and my prayers go out to

> all of your

> children ..

>

>

>

>

>

>

> Thank You

>

> Prutchick

[Guest guest]

yeah thats what im thinking i m new to all this stuff and still trying to

understand all of it .. thanks so much for your input .. appreciate

it..54rrrrhyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy

> From: j_prutchick <j_prutchick@ yahoo.com>

> Subject: Confused

> To: polymicrogyria@ yahoogroups. com

> Date: Monday, January 12, 2009, 4:02 PM

> Hi my name is Prutchick and im a little confused

> about all of

> this PMG. I have alot of unanswered questions and the

> doctors dont

> seem to know how to answer them . My daughter is 3yrs old

> and was

> just daignosed with PMG,Septic Optic Nerve Dysplasia she

> has glasses

> and is going to need surgery to correct her eyes. I just

> dont

> understand she acts like a normal child she is a little

> hyper and is

> defient but what 3 yr old isn't ..lol I guess what

> i'm trying to say

> is i m reading all these stories that everyone has posted

> and these

> poor children seem so much worse than mine. They said that

> the left

> side of her brain was effected Im wondering if there are

> any parents

> out there that have children with PMG that act like a

> normal child.

> She has come a long way in the last year she was a little

> behind

> before but she has caught up and does everything a normal 3

> yr old

> does .. any input would be nice and my prayers go out to

> all of your

> children ..

>

>

>

>

>

>

> Thank You

>

> Prutchick

[Guest guest]

Hi ,

First of all, welcome to the group. I am sorry that you are

stuggling with your unanswered questions. Receiving a new diagnosis

is just the start of a journey, one that is sometimes difficult to

understand at first...

PMG is very much a " spectrum " disorder. Children are effected

differently based on many things, including where in the brain the

PMG is located, any other comorbid disorders they may have, etc. You

will see people who run the gammett here...including adults who

weren't diagnosed with their PMG until they had an MRI for an

unrelated reason as an adult. Turns out they had PMG their entire

life and only struggled with minor issues such as a learning

disability....who knew?!?! ;-) But, one thing I will say, is that

you may be hard pressed to find anyone who thinks of their child

as " these poor children " . I know, personally, that I feel blessed to

have my son and I don't feel that he is " less than " or someone to

bestow sympathy on...and I know he doesn't feel like he needs anyones

sympathy. He is who he is and he is a happy, wonderful light to all

who know him and those who see him. I think that " normal " is such a

tough word to define anymore. Don't you? I have 3 children, none of

whom I would call " normal " ...ha! They all have their quirks and

abilities and disabilities. Whether they have a " diagnosis " or not.

Does that make sense? Please know I say these things out of

kindness, as I know that sometimes it is hard to know someone's

intention through the written word when you can't hear or see them

communicating.

You know your daughter best. She is no different today with a

diagnosis then she was before you had a name for her vision

problems. Maybe the defiance and hyperactivity are part of the PMG,

depending on where in the brain her PMG is located, it is entirely

possible. Or, maybe that is just her at this moment in time.

Whatever the case, she is today, the same girl she was yesterday.

Good luck to you as you begin your journey. Know that answers don't

come over night, but they do come. You may want to look into Kathie

Snow's book, Disability Is Natural, if you are still struggling with

the idea of your daughter having a new diagnosis.

Best,

Krista

>

> Hi my name is Prutchick and im a little confused about all

of

> this PMG. I have alot of unanswered questions and the doctors dont

> seem to know how to answer them . My daughter is 3yrs old and was

> just daignosed with PMG,Septic Optic Nerve Dysplasia she has

glasses

> and is going to need surgery to correct her eyes. I just dont

> understand she acts like a normal child she is a little hyper and

is

> defient but what 3 yr old isn't ..lol I guess what i'm trying to

say

> is i m reading all these stories that everyone has posted and these

> poor children seem so much worse than mine. They said that the left

> side of her brain was effected Im wondering if there are any

parents

> out there that have children with PMG that act like a normal child.

> She has come a long way in the last year she was a little behind

> before but she has caught up and does everything a normal 3 yr old

> does .. any input would be nice and my prayers go out to all of

your

> children ..

>

>

>

>

>

>

> Thank You

> Prutchick

>