Re: Update over here and thanks

September 8, 2001

Hi ....

Sorry to hear about Abby's ear infection/head cold....poor little girl.

I hope the antibiotics help her recover quickly.

I'm telling you, I get tired just reading all that you do. (I don't get

tired of reading about it, I get exhausted reading about all that you

do..... wanted to clarify that).

Why do you have to find another doctor (GP or IM)? Why can't your neuro

doctor treat you from now on? That doesn't make sense, you have a

disease that only the neuro can treat, not a GP or IM.

Since you have found a doctor that doesn't have that ego, I would stick

with him. Your history is too complicated for a GP or IM. You might

email that doctor in OK that I sent you. I understand he's not only

very good but very interested in people with this type of condition

(mito).

At least he might be able to give you some info.

I'm glad you mentioned your little fainting episode to him. The next

time you'll know to get into the ER right away and not wait.

I'm so glad you found this man. Rare find. Isn't it wonderful when

you and your doctor are on the same wave length? Makes you feel so good

but also that you're not crazy and you really can understand much of

what they say to you.

You asked about a liver doctor... Isn't that a liverologist?????? Just

kidding, I went to a Gastroenterology when my liver was in question.

I'll see if I can find that site that explains the lab tests for you.

I also take Calcium. When your on Prednisone it robs the calcium from

your bones. So you need to supplement with the calcium. I not only

take calcium with Vit. D but I also take Miacalcium..I think that's the

way it's spelled... I've been on it for three years this Oct. and

haven't had any problems with Calcinosis. I think some people are more

susceptible to it.

I didn't have any problems with my gums swelling after I started taking

Prednisone. Maybe it will go away after a few days.

If this continues, you might want to call the neuro doc an tell him. He

may want to take you off the higher dose of Prednisone and put you on

Methx. Maybe your system can't take the Prednisone .... Like mine

didn't.... I developed steriod myopathy...

Weakness all over.... Yep, that's my name..... The QUEEN of weakness all

over. I was also told that the proximal muscles are affected but I've

always had trouble with the distal's as well. Maybe it's just lack of

exercise...who knows.

I call my weakness " someone has unplugged me from the wall " ..... I have

to stay down for about 4 days to work up enough energy to go to the

store or doctors appts. I'm so thankful my doctors appts. are now every

two months. That's one less time I have to get up and get dressed.

I saw an ad on TV for the new lipstick that you put on and then you put

something over it.... it suppose to last all day long. Now that's right

up my alley.... My lips are colorless.... I need something on them or

else to many people ask if I'm ok.

So glad you wrote and hang in there ....

Gentle hugs

Vicki

September 8, 2001

Wow, even a healthy person couldn't keep up with your schedule last week, so

pat yourself on the back for accomplishing it all.

As far as your ECG, septal infarct means there was a problem with the septum

in your heart. The septum is the wall between the left and right sides of

the heart. It of course is part of the muscle system that makes the heart

pump.

I agree as a nurse that this new doctor is right that you need to attack the

muscle deterioration aggressively and not be weaning off the prednisone so

quickly. And with your family history, you definitely need to know what you

are dealing with so that you can be treated appropriately. If I am not

mistaken, mitochondrial illness and myositis are treated completely

different and therefore you need to know if you have one or the other or

both. I am also pleased to hear that he is following up on your fainting

spell.

A liver doctor would be an endocrinologist. Have you ever taken a

medication to lower your cholesterol?

> Sodium 132/135 L (136-145)

> Potassium 3.2/3.4/3.3 L (3.5-5.1)

> Calcium 8.2/8.3/8.3/7.8/8.4/8.3/8.3 L

> (8.8-10.5)

> Magnesium 1.7/1.7/1.8 L (1.8-2.4)

> Glucose 116/133 H (70-110)

> Absolute Neutrophils 9329 H (1500-7800)

> Triglycerides 326 H (30-186)

> VLDL 65 H (0-50)

None of these tests are related to myositis, except the neutrophils.

Neutrophils are a type of white blood cell. They are usually elevated when

a patient has an infection or an inflammatory disorder. Did any of your

blood work say that WBC's were elevated?

The reason most of these abnormal tests were not mentioned to you is because

they are so close the normal levels that the were not really considered

abnormal. Most of the time there is a margin of error with these tests.

Sodium, postassium, calcium, and magnesium are considered electrolytes and

unless the levels are way out of range, they don't get alarmed about them.

Yours are so close to normal that they really aren't a concern.

The glucose being high is a concern even though you were on prednisone.

Prednisone can cause diabetes and if you are going to be on a high dose for

two months, you need to ask your doctor to monitor your blood sugar to make

sure it doesn't get too high. This could cause weight loss because there is

not enough insulin to get the digested sugars into your body's cells to

nourish them.

As far as " buzzing " from the prednisone, this is normal when you go on a

high dose. It usually goes away after a few days or a week or so. Please

remember not to overdo during this time. Your energy level will probably

increase and you will be tempted to do too much which could cause muscle

damage. Just be careful.

been increased that I can see. I am craving Avocado a ton,

It is very common to have gum irritation from the prednisone. I don't

understand the whole concept either, but my dentist said that the prednisone

irritates the mucous membranes. There is a mouthwash that the dentist can

give you to help with this irritating side effect. I wish I could remember

the name of it.

Gentle hugs,

Fern

September 8, 2001

{{{{{Vicki}}}}}} Your such a joy hun!!! I find myself so looking

forward to your posts and the wonderful attitude and personality that comes

through....just had to tell you that :-)

The antibiotics are "kicking butt" and the Abby-girl is feeling human

again!!! Course, we didn't know she wasn't feeling human, just that

she wasn't ACTING human there for a few weeks...LOL. I have really

strange kids ya know, and she is no different....we had NO clue she had

an ear infection!!! She had a little cough that came and went for

2 weeks, then it went to her head and she was stuffed up and sounding nasally,

but other than her being a miserable person behaviorally to be around,

there were no other signs of illness. Felt a fool when the doc asked

about her ears and I told here there were NO signs of a problem, to then

have her look in there and BOTH ears were red and full of fluid...DUH!!

She is my second child that gives us no outward signs of ear infections...UGH!!

BUT I am so tickled to have figured out what it was that was making her

impossible to deal with!! And now, having her sleeping a full night....WOW

what a difference that makes in my life!!! The child never has really

slept right, so its been a long 3 1/2 years with her in that respect.

I am LOVING Benadryl and its sleep inducing properties for her right now.....almost

a whole week of not only sleeping from 10-8, but NAPS every day too!!!

I am SHOCKED!! Anyway.....she is turning into a nice little human

to be around and I am more than tickled, can ya tell....LOL.

Thanks for the clarification on the "tired of reading" all I do!!

Truth be told, it makes me more tired reading it than actually doing it....and

imagine that I am doing about half my usual load right now!!! I guess

I am so used to it, I don't even generally realize how much I really do

every day. In fact, so many days I feel like I never get anything

accomplished!! LOL I am in general a "busy body" and am miserable

when I have nothing keeping atleast my mind entertained, so being busy

is generally speaking a good thing for me. Ya know what they say

about idle hands!!!

Why do I need to find another GP or IM??? Good question.

In part because I do need to have someone that can treat me for things

not related to the PM...general things that we were dealing with before

and any minor illness, etc that might come along the way. Then I

have this vision of a doc that can somehow coordinate my care between doctors.....I

need the neuromuscular doc for the PM, but he made it clear that he knows

"muscles" and all the rest is out of his expertise......am thinking I need

to continue with my rheumy for the psoriatic arthritis (while the treatment

is basically the same for the two, pred and/or mtx, there are some differences

and he is better able to monitor joint issues and the like I think).

I see him in a few weeks and will talk more with him about the part that

he might play in the big picture (I liked him too and he may well end up

being able to handle the coordination of things). Then there is the

cardiologist.....hoping that ultimatly its a one time thing and I am not

gonna have a need for one beyond trying to figure out what is happening

with my heart, but I never hold my breath on things like that. Then

there is the liver doctor..... Well, you can see how confusing this

is bound to get!!! Ideally, I could have a wonderful IM or GP that

knows their stuff, that works well with other doctors, and that WANTS to

help coordinate this for me. To be honest, I have been doing it myself

for so long with the kids that I am just tired of the whole mess....LOL.

The thought of now doing it for myself is exhausting, not to mention mind

numbing!! And finally, there is a need to have someone I can call

as needed and is able to get me in quickly if there is a problem.

Ultimatly, this is NOT the neuromuscular guy...while he is great, and I

know I can call him if there is something muscle related going on, thats

as far as his help in this area is gonna go. Sooooo...having said

all of this, if I am way off and I really am not gonna need this at-the-moment

fictional great doctor (LOL) let me know!!! Remember that I am coming

from all of this in the mindset I have with my kids, so I may be off track

in what is really needed. I WILL email the doc in OK and see if I

can pick his brain a bit and maybe get some insight from him also....thanks

a ton for the name hun.

I am really tickled about this new doc too.....I really think he is

gonna take an interest and help me through this part of whats happening

with me. SO wish he was able to handle it all!!! But hey, I

am on a roll lately finding good docs, so maybe thats a good sign that

all of this is not going to be totally complicated. Thinking positive!!!

Thanks a TON for the feedback on the Calcium!!! According to the

lab work, mine was already a little low before the prednisone, so we don't

want to make things any worse. I will work on getting that script

this next week (my pharmacy LOVES me right now...LOL).

Thanks for the feedback too on the gums. I am not actually sure

that they are swelling, just really painful and red, thus my use of the

word "inflamed". They got really bad about the time I was in the

hospital the second time (10-12 days into the pred) and it lasted for about

three days till I went down on the pred again and then it seemed to subside.

Today was not as bad, but definatly not comfortable. Just doesn't

make any sense, but I am gonna hope with you that its short lived.

Speaking of the steroid myopathy.......how did you/they know when that

became an issue!!?? Not that I am planning on experiencing it mind

you, but please tell me what the signs and symptoms are so I can atleast

be aware. Knowing my luck, well......just share when you get the

chance if you don't mind. All we need is to add another problem!!!

I am SO glad to hear I am not the only one feeling weak all over!!

Course, I knew there was a good chance I'd find someone here that could

relate :-) I know the feeling your talking about.....loved

it when you said the "unplugged" analogy the first time because it is perfect

to explain it. I am feeling very fortunate that this feeling is only

coming and going and is not at all pervasive yet (thus me continuing to

do so much I guess). Thing is though, thats just now and again, generally

when I have overdone something, but there is something else going on where

I am physically unable to manage things like lifting a cup or open

something, or pretty much anything that requires the use of strength with

my arms or hands, and its all the time. I can sit here and type only

because I for the most part am resting my arms on the key board tray and

not having to support them in any way. If I have to carry something

(currently my BIG cup with water in it trying to keep my water intake up)

I have to let my arm hang and just dangle it from my fingers by the handle

because there is no way I could hold it even at waist level for more than

a minute. Basically, unless I am just letting my arms lay somewhere,

they very quickly just drop. Its not just the overall "weakness"

like in the unplugged feeling, but more of an inability to make the muscles

even keep doing the basics all the time. Does any of this sound familiar???

I can really handle the lower body stuff...so I have to lift my legs in

the car, this is doable....so steps are a challenge, there are not THAT

many and I am managing to avoid them where I can.....walking distances...well,

this is impossible right now, but I am not letting that stop me from doing

as much as I can (without overdoing) so that I hopefully don't lose any

more of that than I already have. But this upper body stuff is such

a PAIN!!! Not literally really..its not pain, but just that they

cannot do what I need them to. The aches and shaky's come when I

have forced them to do a little more than they were really able, but if

I didn't I'd be sitting here not moving right now. Keeping things

at arms length downward, and supporting them is helpful, but just

not always possible. Course, we are hoping the higher dose of pred

is gonna start getting this all under control, so I am trying to remain

positive that this is going to improve soon. Thanks for any feedback

anyone might have for me on this one.

Thanks for sharing about the lipstick!!! I like it too!!!

LOL As I said hun, you are a joy.

BIG hugs,

anzavic@... wrote:

Hi ....

Sorry to hear about Abby's ear infection/head cold....poor little

girl.

I hope the antibiotics help her recover quickly.

I'm telling you, I get tired just reading all that you do.

(I don't get

tired of reading about it, I get exhausted reading about all that

you

do..... wanted to clarify that).

Why do you have to find another doctor (GP or IM)? Why can't

your neuro

doctor treat you from now on? That doesn't make

sense, you have a

disease that only the neuro can treat, not a GP or IM.

Since you have found a doctor that doesn't have that ego, I would

stick

with him. Your history is too complicated for a GP or IM.

You might

email that doctor in OK that I sent you. I understand he's

not only

very good but very interested in people with this type of condition

(mito).

At least he might be able to give you some info.

I'm glad you mentioned your little fainting episode to him.

The next

time you'll know to get into the ER right away and not wait.

I'm so glad you found this man. Rare find.

Isn't it wonderful when

you and your doctor are on the same wave length? Makes you feel

so good

but also that you're not crazy and you really can understand much

of

what they say to you.

You asked about a liver doctor... Isn't that a liverologist??????

Just

kidding, I went to a Gastroenterology when my liver was in question.

I'll see if I can find that site that explains the lab tests for

you.

I also take Calcium. When your on Prednisone it robs the calcium

from

your bones. So you need to supplement with the calcium.

I not only

take calcium with Vit. D but I also take Miacalcium..I think that's

the

way it's spelled... I've been on it for three years this Oct. and

haven't had any problems with Calcinosis. I think some people

are more

susceptible to it.

I didn't have any problems with my gums swelling after I started

taking

Prednisone. Maybe it will go away after a few days.

If this continues, you might want to call the neuro doc an tell

him. He

may want to take you off the higher dose of Prednisone and put

you on

Methx. Maybe your system can't take the Prednisone .... Like

mine

didn't.... I developed steriod myopathy...

Weakness all over.... Yep, that's my name..... The QUEEN of weakness

all

over. I was also told that the proximal muscles are

affected but I've

always had trouble with the distal's as well. Maybe

it's just lack of

exercise...who knows.

I call my weakness "someone has unplugged me from the wall".....

I have

to stay down for about 4 days to work up enough energy to go to

the

store or doctors appts. I'm so thankful my doctors appts.

are now every

two months. That's one less time I have to get up and get

dressed.

I saw an ad on TV for the new lipstick that you put on and then

you put

something over it.... it suppose to last all day long. Now

that's right

up my alley.... My lips are colorless.... I need something on them

or

else to many people ask if I'm ok.

So glad you wrote and hang in there ....

Gentle hugs

Vicki

September 8, 2001

....

HoooooRaaaaay for the antibiotics. I'm so glad that Abby is feeling

much better.

Now mom can get some rest....!!!!!!!! :~)

I bet when you felt good you were like a tornado....right? I use to do

everything fast.... I walked fast, talked fast, did everything fast and

did a number of things at one time. No one could keep up with

me.....Now, I'm as slow as a turtle...but, I'm getting use to it and I

do like the slower pace that I've been pushed into.

Let me explain the way my doctors set up. I do have an IM doctor who is

just as sweet as they come. But, I've only seen her twice and then she

told me that everything would be handled by my Rheumy. My Rheumy

handles everything with the exception of special stuff. If I get a cold

I see him, if I break out I see him, if I get sick I see him.... they

told me in the beginning that almost everything that happens to me would

be related to the PM or the drugs that I use. I also have a Lung

Specialist, Cardiologist and Gastroendrologist. Each taking care of

parts of my body. If my Rheumy thinks I need to see the

Gastroendrologist he lets me know and they arrange an appt. for me.

The lung specialist works with the cardiologist but if I was seeing the

rheumy and said I was having problems with my heart he would send me to

my cardiologist. It's a perfect system I have to say. All my doctors

are in one clinic making it very easy for my appts. That's another

thing I like about a large clinic. I don't have to drive all over town

for each doctor.

About steroid myopathy.... when I first starting taking the Prednisone I

felt so darn good. But after I was on the 60mgs for about 5 weeks I

noticed I was feeling very tired and started to become weaker. I was

also blowing up like a balloon. 8 weeks after starting Prednisone I

went to see my doctor. I was having a hard time breathing, heart was

racing, my blood pressure was elevated and I felt like I was being

strangled. Dr. Kempf decided to put me on Imuran while I was decreasing

the Prednisone. Imuran takes a good three months to get it built up in

your system. As I came down, the weakness started going away... but I

couldn't have done it without the Imuran. Your doctor might do the

same thing if you experience problems with Prednisone.

I do have good days and bad days. I know that when I really feel weak

it's my signal to just lay down and rest as much as I can. I take my

muscle pill at night and sleep as much as I can. Usually after about 4

days I can gain enough energy to move around again. I've also tried to

push through it like had done. But, I also learned that it

doesn't work. It only makes matters much worse. Then I feel like I've

been run over by a truck and no one came back to pick me up.

You're going to feel so much better taking the Ambien at night. You'll

wake up a new woman....LOL

I know the feeling you're talking about. I went out to feed tonight and

I had to give one of my mares her tummy rub, it's something I started

when she was first born....she's now 27. I stood there hanging over

her body and trying to rub her tummy.... finally I had to stop and just

lay over her. She's such a sweetie that she just stood there. Next I

had to turn on the water for the trough.... It was a loooooong walk over

there and I had to stop three times. My muscles were burning something

awful. I think I could have dropped right there in the field and gone

to sleep. Like you, it seems everything just stops working.

One thing I love about Webtv is that I can sit up in bed and use it. I

know I couldn't sit at a desk.... Oh no.... that wouldn't work at all.

You mentioned carrying a cup... I gave the cups up a long time ago. I

carry a water bottle with me. Easier for me to hold and they weigh

less. My arms will get tired and if there is anything in my hands at

the time... it ends up on the floor. They just give out. The water

bottles bounce so nicely. When I'm in bed trying to recoup I use a

tray that rolls. I put everything on the tray.... now I don't have to

clean up broken plates and messes on the floor. I roll it from the

kitchen to the bedroom.

Yeah, the doctor in OK might have something he could send you. I know

he's doing research on the problem. His speech that he made at Scripps

was excellent according to my doctors.

Keep that chin up kiddo.... It's bound to get better.

Hope you have a better day tomorrow.

Hugs

Vicki

September 9, 2001

Hi ,

Wow! My brain is still reeling from all that you are going through! How

in the world do you keep all that info in your head? It's really great that

you manage to digest all that and feel on a par with your doctors.

Re proximal muscle weakness: I, too, have weakness everywhere even though

the docs say it should be only proximal. My neck is very weak, my forearms,

ankles, back and even my feet seem weak! Yet I'm told that it's normally

only shoulders, hips, thighs and sometimes the neck involved in

Dermatomyositis. My left side is about 50% weaker than the right, and no one

seems to understand that...have suggested stroke, but no tests showed

stroke.

Good luck to you. And to your family, . Let us know what goes on.

Annette

Update over here and thanks

Hi Friends :-)

Sorry I have been so quiet this week, its been a wild one over here and

time has been limited. I do SO appreciate all of the responses I

recieved and you all helped to ease some concerns and answer some

questions for me. I am gonna address some of those here rather than one

by one, as well as share where things stand over here right now.

First, the update I guess. This last week was a tough one, with me

getting weaker and weaker, all the while with SO much to do there was

just not time to sit down and stop like I wanted to. However, I did try

to take it easy with it all and not push too much, and had my mom and

hubby helping so I made it through somehow!! Managed to get Chance to

school all week (hubby is taking and then picking him up and taking him

back to work with him for now). Managed to get Madison and Abby to the

new pediatrician on Tuesday for sick visits.....Abby has a nice double

ear infection/head cold so antibiotics for her, and we got the go ahead

to try Benadryl with her to get her to sleep at night (has slept through

the night, from a reasonable hour on ALL week!! WOOHOO)...could have

kissed the doc when she said it was okay to try this to see if we can

get this girl into a decent sleep schedule...LOL. Madison is dehydrated

as usual and finally we have a doctor that actually wants to help her

with this!!! Means that we need to fly back to Cleveland though,

because we need to get her a feeding tube, and at the same time will go

ahead with another muscle biopsy on her to see if we can get a more

definitive answer as to which mito defect is affecting the family.

Course, this is if we can somehow make this work, if not then we will

just need to get it done here, and the biopsy will have to wait. We'll

know something more this next week. We managed to get Madison started

at school on Wednesday, and after an initial balk at riding the bus the

first morning (she IS only 4, so what did we expect!!) she was a trooper

and rode there AND back on Friday. Things seem to be good there and I

am tickled. Managed to get Chance in for his 8 yr well child check up

on Thursday, where all was well other than that he is gonna be bigger

than me before too much longer!!!! He just turned 8 and is 70lbs and 4'

6 " tall!!! Managed to get all of my hospital records, records from the

rheumy and from the internal med doc for MY appointment on Friday.

So yesterday was the BIG day....I saw the neuromuscular doc. I had

spent much of Thursday night looking through all of my hospital records

just in shock at the mess I was/am!! Since August 9th (to the 29th) I

have had 13 blood draws, and a total of 70 different blood tests done

(many of them numerous times).....and of those 70, FORTY of my blood

levels are off!!! Just an absolute mess. You know things are bad when

you have to do a FLOW CHART to be able to make heads or tails of your

own blood work....LOL. Atleast I can say, while there are more than a

few shortcomings of the internal med doc I have been seeing, one of them

has NOT been doing plenty of blood work. What was frustrating though

was that none of this was discussed with me at all. I knew about maybe

6 that were off and that was it. I also got to see the three ECG's that

were done, and there is no question that at some time between the 9th

and the 15th (the first and second ECG) there was something that

happened with my heart. It read as a " septal infarct " , but the doc

insists thats not what it was, but more likely myocarditis. Whatever it

is/was, it was there also on the third ECG. Otherwise, there was not a

whole lot more there to give some clues as to what is happening.

I had everything together, including a Summary of my illness pulled

together for the doc. This summary is something I came up with for the

kids and the docs LOVE it because it basically puts everything they

really need to know on one (well okay, for this family its 2-3 pages

long) page....diagnosis, tests, medications, symptoms and time line of

illness, doctors names, addresses and phone numbers, and family

history. I managed to get mine to fit 2 pages!! LOL I have actually

seen this doc before, about 2 years ago, when we were first trying to

figure out what was wrong with Madison because of some spells that I had

been having for as long as I could remember. He suspected at the time

Periodic Paralysis, although my presentation was not completely

typical. We did some blood work and NCV at the time, and they had

wanted me to go in for a MRI, but I never did manage that one (life got

busy!!). So, he and I had met before and I did find him pretty good the

first time too. He is not that much older than me, and really we

talked more like colleagues than doctor/patient, which is how I like

it. Course, he walked in without a clue of what I was about to present

him with (literally almost 60 pages of information!!)....LOL. He was

cool about it though, didn't panic too much, and tried to weed through

it all with me.

Ultimatly where we stand is this. First, all he could really deal with

is the muscle part of it all, and all the rest we are gonna have to

still try and figure out (although, unlike my internal med doc, this one

did say we NEED to figure it all out and NEED to see some specialists).

As far as the muscle stuff goes, he agreed that no matter what, we know

that there is an inflammatory myopathy, whether its poly or derma is not

clear right now. Whether there is a primary or secondary to a

mitochondrial disease like my children have is not known.....in his

limited understanding of mito, he doesn't see it, and yet, was quick to

say this was not an area he is well versed in and that the children's

doctor suspecting it in me means more than his questioning it. Love a

man with a normal level of EGO!!! LOL We do know that what we have

been doing so far treatment-wise is not enough as my weakness is

progressing and is now more upper body than lower, more right sided than

left. Although, he suspects my fainting episode 2 weeks ago now, which

is when the right sided weakness got worse, might have actually been a

stroke, or stroke-like episode, so has scheduled an MRI so we can see if

anything shows up there that might give us a clue. He also wants me to

have a mammogram, so thats being scheduled (just had a pap smear in June

so I am good to go there). We did a repeat of some blood work (guess

I'll know soon enough if my busyness of this last week knocked my

numbers back up again or not huh), and I *think* that was it. Oh, and

he is going to go down and actually look at the muscle biopsy slides

himself with the pathologist that did them, and is agreeable to sending

some to New York to a mito doc there that specializes in doing more

extensive mito testing on frozen muscle. And I am sure also that he

will get a chance to actually look through the blood work and such and

maybe he'll have some more ideas for me when all is said and done.

Ultimatly he was ON and interested and respectful and treated me as an

equal and part of the team.....and I didn't even have to tell them how

much I needed that!!!

Treatment-wise he said we have just been beating our heads against the

wall coming down off the pred so quickly (IM doc had me coming down 5mgs

a week since I began) so he is putting me back on 60mgs (although wanted

to go to 80 but was good about discussing it with me and we decided it

was okay to try the 60mgs and see if it will work or not) and I am to be

on it at this level for atleast 2 months, when we will see how I am

doing on it. At that time, we will try going every other day, and will

also see if we need to add the methotrexate or not. This is all

assuming that I start getting better here pretty soon, and definatly am

not getting worse. If either one occurs, than we will decide then what

is next. Otherwise, we will stick with this for the next 2 months, get

the other tests done, see the other specialists (cardiologist and...what

IS a liver doctor anyway??), go back by in a month for repeat blood

work, already see my rheumatologist in a few weeks, and I guess I am

gonna have to find a new internal med or GP that can handle all of this

somehow. Are we having fun yet?????? Like I didn't have enough doctors

to deal with already because of the kids....LOL. And I am NOT

especially fond of doctors!!! Did I mention that??? LOL

Hey Vicki....he DID give me atleast somewhat of an explanation of the

Myoglobin.....basically said its not seen much because they really just

don't do the test much!!! I think, after contemplating it for a while

last night that the reason they did mine, and continued monitoring it,

was because there were some initial signs that my kidneys were having a

hard time...it was mild, but this is likely the reason why. Had my

kidneys been 100% fine on initial testing, there is a good chance

apparently that they simply would just have never even run the myoglobin

test, and this is the case with most people apparently. So, a little

more clarity and it was SO simple...LOL. I DID apparently have

Rhabdomyolysis though, based on the myoglobin numbers and the necrosis

found on the biopsy, but even that isn't 100% sure, because they did not

really do the other testing that they normally would have to dx that.

Ultimatly, not a huge issue I don't think, but I am still contemplating

it.

While I have you all here, I want to share some of the abnormal blood

work and see if anyone has any ideas on what it could mean and whether

its something that anyone else has dealt with. This is just the ones

that are NOT muscle related, i.e., not directly relating to the myositis

that I can tell........

Sodium 132/135 L (136-145)

Potassium 3.2/3.4/3.3 L (3.5-5.1)

Calcium 8.2/8.3/8.3/7.8/8.4/8.3/8.3 L

(8.8-10.5)

Magnesium 1.7/1.7/1.8 L (1.8-2.4)

Glucose 116/133 H (70-110)

Absolute Neutrophils 9329 H (1500-7800)

Triglycerides 326 H (30-186)

VLDL 65 H (0-50)

These numbers reflect pre and post prednisone introduction (so that does

not seem to be playing a roll persay), except for the Glucose numbers,

which were only elevated after the pred was started. I am already

supplementing with Potassium, and the neuromuscular doc is thinking I

should probably add calcium but wasn't sure if there might be a reason

that it was not okay and wanted me to check with my IM doc about it.

Seems like I have read that its not a good thing to add when a person

has PM....is that right?? Something about the increase in Calcinosis

making it not something to supplement??

I think that about covers the update.....LOL. I went back up on the

Pred today and am " buzzing " as I type and really wishing I could go and

hide somewhere away from the noise of life.....I sure hope this is not

the way I am gonna feel every day!!! UGH Oh...one little bright point

for me yesterday was that I was just sure I had gained some weight, but

had actually lost 2 more!!! I am really watching my intake...being sure

I get enough, but not overdoing...but atleast so far, my appetite has

not really been increased that I can see. I am craving Avocado a ton,

but otherwise, nothing major.....LOL. It could be worse!!!

Thanks for listening friends and for being here. I am still trying to

maintain the positive attitude, but am frustrated that things have been

getting worse instead of any better. Hopefully this will do the trick

and I can get on track.

Oh dangit....just thought of two more questions.....

1. I have told you all about my horrible teeth problems, however, my

gums have always been in very good shape. I had a problem the week I

was on the 60mgs of pred with them being really inflamed and hurting me,

but this subsided as I started to come down. Today was my first day

back on the higher dose, and lo and behold, my gums are beginning to

hurt again. Anyone have a clue whats happening here????? It really

makes no sense since if anything, the pred should be making the

inflammation nonexistent so I am stumped (and hurting).

2. Is there anyone else dealing with weakness all over?? I know with PM

its normally the proximal muscles affected, but at this point atleast,

both my proximal AND distal seem to be equally affected.

Thanks friends!!!

BIG hugs,

September 9, 2001

Hi Annette... I'm like you. I've always had weakness in my distal

muscles. I'm also weaker on my left side. If my right hand ever gave

out completely I would be in big trouble. I don't think any of the

doctors are sure how this disease works... I know mine were amazed that

I had weakness in my distal muscles.... makes sense to me though. Have

a good day.

Hugs

Vicki

September 9, 2001

Vicki

Would you send me the info on the doctor in OK that you were telling

Hesterabout? Thanks

.....he probably won't be covered by my insr

but I might get lucky

Teddi

mailto:teddifromok@...

September 9, 2001

Hi Vicki :-)

Yep...tornado is a good decription of me!!! I type almost as fast as I

talk and talk almost as fast as I think....LOL. And the body is

generally moving the whole time. And now that you all know how MUCH I

can " talk/type " you have a pretty good idea of just how tornadoish I

really am....LOL. Course, life hasn't given me a lot of choice in

this...too many things to do, too many people to take care of, too many

problems to solve, and too many pulls coming from every direction. My

" real " personality is actually pretty laid back and calm!!! I think

thats why my night time hours, when the kids are in bed and I have time

for ME, I want silence and calm so much. Its a time for me to find my

balance. I really have always looked forward to a time when things will

be slower and I can take more time to do things, just isn't a good time

for it right now dangit!!! LOL

Thanks SO much for sharing your doctor network with me!!! This gives me

hope and I am gonna wait to do anything till I see my rhuemy again in a

couple of weeks before I worry about getting an IM or GP lined up. I

could even go back to the GP that I was seeing before (overall he was

fine, just missed what was happening with me, or atleast the

seriousness, but then I didn't look that sick!!). Or I could change

over to the other IM in the practice where I am right now.....he is

younger and the one encounter I had with him, I really liked him and he

was much more open with me about things. There ARE some options. We'll

get something figured out. Hopefully my rhuemy will be like yours and

be willing to handle most everything with me...he is definatly someone

that I trust right now. If only I could have all of the doctors in one

clinic!!! Ah well....we'll have to make do with what we have here.

Thanks also for sharing your experience with steroid myopathy...could

not for the life of me figure out how they could tell the difference!!!

Just glad they caught yours and were able to get you down off the pred.

I feel like I am complaining alot here, when in reality I *think* I feel

reasonably well considering all thats going on right now!!! I really

do!!! I mean, I am only rarely really wanting to lay down even, or feel

like I don't have a choice. It does come, but I seem to be able to lay

down for a short while and atleast get to a functioning level again.

Its the lack of strength to do things thats the most frustrating for me

I think......I don't feel " sick " persay. Atleast not so much of the

time that it makes me want to slow down as much as I probably need to.

Am I pushing myself??? I don't honestly know if at the level I am, I am

doing more harm or good. I know I am afraid to lay down and stop for a

while because I fear not getting it back, so maybe its my mind playing

tricks on me at this point. I just don't know!!! I am definatly moving

less and having to find ways to compensate for that, but its wierd.....I

don't FEEL sick, just like my body doesn't want to work to full capacity

anymore. Does that make any sense??

Course, this is likely why my first GP was missing that there was

something really wrong. I'd go in there and while yes, there was one

thing after another not right, I was more amazed at it, and at how well

I still felt than anything else. Yes, I had slowed down and didn't feel

" right " since earlier this year, but I was still doing most everything I

had before. I didn't have a clue that there was anything seriously

wrong...not a clue. Heck, when I went to the rheumy, I was still

clueless. I sat there, so calmly telling him my symptoms and test

results, all the while his eyes becoming more and more alarmed, until I

finished, he examined me and said I HAD to go straight to the ER. I was

SO shocked!!! I drove home, packed some clothes for my kids (they were

supposed to go with my mom that weekend anyway), made some calls, went

by and saw my mom and the kids to drop things off and tell her what was

happening, and THEN drove myself to the ER, fully expecting to be seen

and sent home. What a wild ride!! Then, even once I was in the

hospital, I did NOT slow down!!! I knew every nurse, aide, food

delivery person, maid, etc on my floor....LOL. I walked the halls

incessently.....would see just how many times I could go round and round

(and it was a relatively small floor...LOL) before being bored to tears

or driving the personnel there crazy....LOL. Heck, the nurses were

offering me work to do!!! LOL I was as well a person sitting in the

hospital for 9 days as I am sure they have ever seen. I was always

awake and alert.....couldn't for the life of me sleep past 6am while I

was in there, so was up as they started the weight checks, would walk

the halls till breakfast came, eat and walk the halls again. Someone

would usually show up about mid morning and we would talk, color (made

some great pics while I was in there...LOL), go down stairs and wander

around, you name it, as long as it was NOT laying there in the bed.

Heck, even the muscle biopsy didn't really slow me down!!! I was up and

walking hours afterwards and did not ever stop again.

It really was not even till I got out that I found that I had " lost "

anything, and this was when I began dealing with the lower body weakness

and difficulties with lifting my legs and such. I was still walking

though without any difficulty. Still had the stamina to go distances.

Just had to maneuver steps and getting into the car and such. I

actually drove myself 20 miles to meet with the kids new pediatrician

(had had to cancel our first interview when the rheumy called with an

opening 2 weeks before) at 6:30 in the morning 3 days after I got out of

the hospital and she had NO clue about any of it till we met with her

the second time (yes she was shocked...LOL).

Honestly, most of the concern over myself in my eyes has been looking at

the numbers and test results.....it all looks awful!!! What I am

physically feeling though is SO much less than what one would expect

from it all. And I am SOOO thankful for that. Concerned and not sure

where all of this is heading, and scared that it could get worse, but

also remaining hopeful that if I have done this well so far, maybe just

maybe thats a good sign. I also know I am still in the very " logical "

stage of dealing with everything.......learning and researching and

seeking out answers and people to help me. Anyway...finding myself just

rambling this morning!!! SORRY!!!!

OH....wanted to tell you that my family has a ranch and we have horses

too!!!! My dad has always been a cowboy and then started playing polo a

few years ago and now plays regularly. He just got a pretty little girl

thats a great + grandaughter of Secretariat!!! I have always loved

horses and used to ride regularly and my kids have all been up on them

and I hope that they will have the same love for them. They adore

visiting the ranch and being country kids as much as they can :-)

Hearing about your guys always makes me think of it!!! My parents live

out there, mom full time, and my dad Friday through Monday as he has a

business here in town. Mom moved out there years and years ago now, so

she could slow down and its been wonderful for her.

Thanks so much as always Vicki for talking me through this!!!! Who

needs therapists when I have you all!! LOL Course, you all may be

wanting to charge me by the hour before too long if I keep up with

this<grin>.

BIG hugs,

September 9, 2001

Hi Annette :-)

LOL...I have a strange brain I think!!! Ask me to remember someones

name and I am clueless, but give me medical facts and it sticks in there

like glue. My kids being sick forced me to start researching and

I found out about something I can do really well....so now I do it for

myself and anyone else that will let me<grin>. It really is ironic

though that so much of the researching I have done on my kids over the

last 3 years, so much of it involving muscle pathology and the like, would

end up being useful to me in understanding whats happening with me.

Life really is strange.....LOL.

Thanks so much for the support hun....I promise to keep you all updated.

BIG hugs,

Annette Flamand wrote:

Hi ,

Wow! My brain is still reeling from all that you are

going through! How

in the world do you keep all that info in your head? It's really

great that

you manage to digest all that and feel on a par with your doctors.

Re proximal muscle weakness: I, too, have weakness

everywhere even though

the docs say it should be only proximal. My neck is very weak,

my forearms,

ankles, back and even my feet seem weak! Yet I'm told that it's

normally

only shoulders, hips, thighs and sometimes the neck involved in

Dermatomyositis. My left side is about 50% weaker than the right,

and no one

seems to understand that...have suggested stroke, but no tests

showed

stroke.

Good luck to you. And to your family, . Let

us know what goes on.

Annette

September 9, 2001

Hi Teddi..... Your wish is my command...

ROBERT LEWIS WORTMANN MD

Fax:

Location: DEPT INTERNAL MED

2808 S SHERIDAN RD

TULSA , OK 74129

He teaches/researches at the University of Tulsa Medical center.

Hope this helps.

Vicki

September 9, 2001

Oh Teddi!!!! LMAO

My hubbys grandfather used to call me Hester (bless his soul) ALL the

time......we THINK he was doing it on purpose, teasing me, but one never

knew for sure....LOL.

Hubby still occasionally calls me it and we smile remembering such a

neat man.....just had to let you know that you inadvertently gave me a

"smile moment" this morning!!!! You can call me HESTER any time

:-)

BIG hugs,

HEATHER......LOL

TeddiFromOK@... wrote:

Vicki

Would you send me the info on the doctor in OK that you were telling

Hesterabout? Thanks

.....he probably won't be covered by my insr

but I might get lucky

Teddi

mailto:teddifromok@...

September 9, 2001

,

Thanks for the thorough update. I always enjoy them.

The liver doctor is the Gastroenterologist.

Was you glucose level drawn while fasting? If not, those numbers aren't bad.

I supplement my calcium by chewing Tums Ultra or Extra Strenth (berry

flavored). It give me an extra 800mg of calcium per day. I also take Fosamax

because of the Osteoperosis.

I have PM for the time being (will update soon) and have muscle weakness in

my legs, shoulders, arms, and hands. My feet work okay, and can drive (even

though I can hardly walk). Nothing weak in the throat, neck, or facial

muscles.

Will write more in a few days after I get some more information.

BillG

Camarillo, Ca

PM

Update over here and thanks

> Hi Friends :-)

>

> Sorry I have been so quiet this week, its been a wild one over here and

> time has been limited. I do SO appreciate all of the responses I

> recieved and you all helped to ease some concerns and answer some

> questions for me. I am gonna address some of those here rather than one

> by one, as well as share where things stand over here right now.

_________________________________________________________

September 9, 2001

Oooops!!

....that's what I get from propping the

keyboard on my " shelf " to type.....it wiggles

and wobbles and all sorts of strange words

come out...LOL

Guess that boo boo entitles you to call me

by my real namd (shhh...don't let the others

know) of Nathetta

Teddi

mailto:teddifromok@...

September 9, 2001

Annette,

Every muscle in 's body seemed to be affected when he was at his worst.

I thought of your friend, newly diagnosed with Breast Cancer, last night

when I was reading my new " Rosie " Magazine. It is the October issue and my

not yet be available on NewStands but you need to watch for it. You may

want to pick up a copy for her but you read it first as you would know how

she would react to the articles in it. It has several articles about Breast

Cancer. All positive!! Many survivors. Even a picture of several women,

naked from the waist up, who have had mastectomies. The photo surprised me

at first when I turned the page and then I realized I was smiling as all of

the women in the picture literally glowed with health and strength. It is

very well done. I am only about 1/2 way though the magazines but thought

your friend might be uplifted to hear such postive outcomes.

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: RE: Update over here and thanks

>Date: Sun, 9 Sep 2001 08:18:00 -0400

>

>Hi ,

> Wow! My brain is still reeling from all that you are going through! How

>in the world do you keep all that info in your head? It's really great that

>you manage to digest all that and feel on a par with your doctors.

> Re proximal muscle weakness: I, too, have weakness everywhere even

>though

>the docs say it should be only proximal. My neck is very weak, my forearms,

>ankles, back and even my feet seem weak! Yet I'm told that it's normally

>only shoulders, hips, thighs and sometimes the neck involved in

>Dermatomyositis. My left side is about 50% weaker than the right, and no

>one

>seems to understand that...have suggested stroke, but no tests showed

>stroke.

> Good luck to you. And to your family, . Let us know what goes

>on.

>Annette

>

> Update over here and thanks

>

>Hi Friends :-)

>

>Sorry I have been so quiet this week, its been a wild one over here and

>time has been limited. I do SO appreciate all of the responses I

>recieved and you all helped to ease some concerns and answer some

>questions for me. I am gonna address some of those here rather than one

>by one, as well as share where things stand over here right now.

>

>First, the update I guess. This last week was a tough one, with me

>getting weaker and weaker, all the while with SO much to do there was

>just not time to sit down and stop like I wanted to. However, I did try

>to take it easy with it all and not push too much, and had my mom and

>hubby helping so I made it through somehow!! Managed to get Chance to

>school all week (hubby is taking and then picking him up and taking him

>back to work with him for now). Managed to get Madison and Abby to the

>new pediatrician on Tuesday for sick visits.....Abby has a nice double

>ear infection/head cold so antibiotics for her, and we got the go ahead

>to try Benadryl with her to get her to sleep at night (has slept through

>the night, from a reasonable hour on ALL week!! WOOHOO)...could have

>kissed the doc when she said it was okay to try this to see if we can

>get this girl into a decent sleep schedule...LOL. Madison is dehydrated

>as usual and finally we have a doctor that actually wants to help her

>with this!!! Means that we need to fly back to Cleveland though,

>because we need to get her a feeding tube, and at the same time will go

>ahead with another muscle biopsy on her to see if we can get a more

>definitive answer as to which mito defect is affecting the family.

>Course, this is if we can somehow make this work, if not then we will

>just need to get it done here, and the biopsy will have to wait. We'll

>know something more this next week. We managed to get Madison started

>at school on Wednesday, and after an initial balk at riding the bus the

>first morning (she IS only 4, so what did we expect!!) she was a trooper

>and rode there AND back on Friday. Things seem to be good there and I

>am tickled. Managed to get Chance in for his 8 yr well child check up

>on Thursday, where all was well other than that he is gonna be bigger

>than me before too much longer!!!! He just turned 8 and is 70lbs and 4'

>6 " tall!!! Managed to get all of my hospital records, records from the

>rheumy and from the internal med doc for MY appointment on Friday.

>

>So yesterday was the BIG day....I saw the neuromuscular doc. I had

>spent much of Thursday night looking through all of my hospital records

>just in shock at the mess I was/am!! Since August 9th (to the 29th) I

>have had 13 blood draws, and a total of 70 different blood tests done

>(many of them numerous times).....and of those 70, FORTY of my blood

>levels are off!!! Just an absolute mess. You know things are bad when

>you have to do a FLOW CHART to be able to make heads or tails of your

>own blood work....LOL. Atleast I can say, while there are more than a

>few shortcomings of the internal med doc I have been seeing, one of them

>has NOT been doing plenty of blood work. What was frustrating though

>was that none of this was discussed with me at all. I knew about maybe

>6 that were off and that was it. I also got to see the three ECG's that

>were done, and there is no question that at some time between the 9th

>and the 15th (the first and second ECG) there was something that

>happened with my heart. It read as a " septal infarct " , but the doc

>insists thats not what it was, but more likely myocarditis. Whatever it

>is/was, it was there also on the third ECG. Otherwise, there was not a

>whole lot more there to give some clues as to what is happening.

>

>I had everything together, including a Summary of my illness pulled

>together for the doc. This summary is something I came up with for the

>kids and the docs LOVE it because it basically puts everything they

>really need to know on one (well okay, for this family its 2-3 pages

>long) page....diagnosis, tests, medications, symptoms and time line of

>illness, doctors names, addresses and phone numbers, and family

>history. I managed to get mine to fit 2 pages!! LOL I have actually

>seen this doc before, about 2 years ago, when we were first trying to

>figure out what was wrong with Madison because of some spells that I had

>been having for as long as I could remember. He suspected at the time

>Periodic Paralysis, although my presentation was not completely

>typical. We did some blood work and NCV at the time, and they had

>wanted me to go in for a MRI, but I never did manage that one (life got

>busy!!). So, he and I had met before and I did find him pretty good the

>first time too. He is not that much older than me, and really we

>talked more like colleagues than doctor/patient, which is how I like

>it. Course, he walked in without a clue of what I was about to present

>him with (literally almost 60 pages of information!!)....LOL. He was

>cool about it though, didn't panic too much, and tried to weed through

>it all with me.

>

>Ultimatly where we stand is this. First, all he could really deal with

>is the muscle part of it all, and all the rest we are gonna have to

>still try and figure out (although, unlike my internal med doc, this one

>did say we NEED to figure it all out and NEED to see some specialists).

>As far as the muscle stuff goes, he agreed that no matter what, we know

>that there is an inflammatory myopathy, whether its poly or derma is not

>clear right now. Whether there is a primary or secondary to a

>mitochondrial disease like my children have is not known.....in his

>limited understanding of mito, he doesn't see it, and yet, was quick to

>say this was not an area he is well versed in and that the children's

>doctor suspecting it in me means more than his questioning it. Love a

>man with a normal level of EGO!!! LOL We do know that what we have

>been doing so far treatment-wise is not enough as my weakness is

>progressing and is now more upper body than lower, more right sided than

>left. Although, he suspects my fainting episode 2 weeks ago now, which

>is when the right sided weakness got worse, might have actually been a

>stroke, or stroke-like episode, so has scheduled an MRI so we can see if

>anything shows up there that might give us a clue. He also wants me to

>have a mammogram, so thats being scheduled (just had a pap smear in June

>so I am good to go there). We did a repeat of some blood work (guess

>I'll know soon enough if my busyness of this last week knocked my

>numbers back up again or not huh), and I *think* that was it. Oh, and

>he is going to go down and actually look at the muscle biopsy slides

>himself with the pathologist that did them, and is agreeable to sending

>some to New York to a mito doc there that specializes in doing more

>extensive mito testing on frozen muscle. And I am sure also that he

>will get a chance to actually look through the blood work and such and

>maybe he'll have some more ideas for me when all is said and done.

>Ultimatly he was ON and interested and respectful and treated me as an

>equal and part of the team.....and I didn't even have to tell them how

>much I needed that!!!

>

>Treatment-wise he said we have just been beating our heads against the

>wall coming down off the pred so quickly (IM doc had me coming down 5mgs

>a week since I began) so he is putting me back on 60mgs (although wanted

>to go to 80 but was good about discussing it with me and we decided it

>was okay to try the 60mgs and see if it will work or not) and I am to be

>on it at this level for atleast 2 months, when we will see how I am

>doing on it. At that time, we will try going every other day, and will

>also see if we need to add the methotrexate or not. This is all

>assuming that I start getting better here pretty soon, and definatly am

>not getting worse. If either one occurs, than we will decide then what

>is next. Otherwise, we will stick with this for the next 2 months, get

>the other tests done, see the other specialists (cardiologist and...what

>IS a liver doctor anyway??), go back by in a month for repeat blood

>work, already see my rheumatologist in a few weeks, and I guess I am

>gonna have to find a new internal med or GP that can handle all of this

>somehow. Are we having fun yet?????? Like I didn't have enough doctors

>to deal with already because of the kids....LOL. And I am NOT

>especially fond of doctors!!! Did I mention that??? LOL

>

>Hey Vicki....he DID give me atleast somewhat of an explanation of the

>Myoglobin.....basically said its not seen much because they really just

>don't do the test much!!! I think, after contemplating it for a while

>last night that the reason they did mine, and continued monitoring it,

>was because there were some initial signs that my kidneys were having a

>hard time...it was mild, but this is likely the reason why. Had my

>kidneys been 100% fine on initial testing, there is a good chance

>apparently that they simply would just have never even run the myoglobin

>test, and this is the case with most people apparently. So, a little

>more clarity and it was SO simple...LOL. I DID apparently have

>Rhabdomyolysis though, based on the myoglobin numbers and the necrosis

>found on the biopsy, but even that isn't 100% sure, because they did not

>really do the other testing that they normally would have to dx that.

>Ultimatly, not a huge issue I don't think, but I am still contemplating

>it.

>

>While I have you all here, I want to share some of the abnormal blood

>work and see if anyone has any ideas on what it could mean and whether

>its something that anyone else has dealt with. This is just the ones

>that are NOT muscle related, i.e., not directly relating to the myositis

>that I can tell........

>Sodium 132/135 L (136-145)

>Potassium 3.2/3.4/3.3 L (3.5-5.1)

>Calcium 8.2/8.3/8.3/7.8/8.4/8.3/8.3 L

>(8.8-10.5)

>Magnesium 1.7/1.7/1.8 L (1.8-2.4)

>Glucose 116/133 H (70-110)

>Absolute Neutrophils 9329 H (1500-7800)

>Triglycerides 326 H (30-186)

>VLDL 65 H (0-50)

>

>These numbers reflect pre and post prednisone introduction (so that does

>not seem to be playing a roll persay), except for the Glucose numbers,

>which were only elevated after the pred was started. I am already

>supplementing with Potassium, and the neuromuscular doc is thinking I

>should probably add calcium but wasn't sure if there might be a reason

>that it was not okay and wanted me to check with my IM doc about it.

>Seems like I have read that its not a good thing to add when a person

>has PM....is that right?? Something about the increase in Calcinosis

>making it not something to supplement??

>

>I think that about covers the update.....LOL. I went back up on the

>Pred today and am " buzzing " as I type and really wishing I could go and

>hide somewhere away from the noise of life.....I sure hope this is not

>the way I am gonna feel every day!!! UGH Oh...one little bright point

>for me yesterday was that I was just sure I had gained some weight, but

>had actually lost 2 more!!! I am really watching my intake...being sure

>I get enough, but not overdoing...but atleast so far, my appetite has

>not really been increased that I can see. I am craving Avocado a ton,

>but otherwise, nothing major.....LOL. It could be worse!!!

>

>Thanks for listening friends and for being here. I am still trying to

>maintain the positive attitude, but am frustrated that things have been

>getting worse instead of any better. Hopefully this will do the trick

>and I can get on track.

>

>Oh dangit....just thought of two more questions.....

>1. I have told you all about my horrible teeth problems, however, my

>gums have always been in very good shape. I had a problem the week I

>was on the 60mgs of pred with them being really inflamed and hurting me,

>but this subsided as I started to come down. Today was my first day

>back on the higher dose, and lo and behold, my gums are beginning to

>hurt again. Anyone have a clue whats happening here????? It really

>makes no sense since if anything, the pred should be making the

>inflammation nonexistent so I am stumped (and hurting).

>2. Is there anyone else dealing with weakness all over?? I know with PM

>its normally the proximal muscles affected, but at this point atleast,

>both my proximal AND distal seem to be equally affected.

>

>Thanks friends!!!

>

>BIG hugs,

>

September 9, 2001

NATHETTA ?????? LOL Where on earth did Teddi come from?????

Vicki

September 9, 2001

It will be our little secret hun<grin>

As I said, it gave me a "smile moment" this morning, so it was a good

boo boo...LOL.

BIG hugs,

TeddiFromOK@... wrote:

Oooops!!

....that's what I get from propping the

keyboard on my "shelf" to type.....it wiggles

and wobbles and all sorts of strange words

come out...LOL

Guess that boo boo entitles you to call me

by my real namd (shhh...don't let the others

know) of Nathetta

Teddi

mailto:teddifromok@...

September 9, 2001

You can pick my brain any time! I enjoy it for two reasons, the medical

field is my passion and it helps keep up my skills especially when I have to

look something up to answer a question.

Okay, quite frankly I believe that they don't want you to believe there was

an infarct and if it was that it was nothing to worry over. The reasoning

behind that one is to protect their hind ends.

I really do want to give you some answers to your questions, but I am fading

fast. I only slept three hours last night and I am exhausted. I'll be fine

with some rest. I will connect sometime tomorrow an answer your questions.

Gentle hugs,

Fern

September 9, 2001

It just kinda happened since no one could

pronounce my name right.....Ya see. my dads

name was and my moms name was

Hetta so what chance did an only child have???

Teddi

mailto:teddifromok@...

September 9, 2001

Oh Fern...THANK YOU!!! Your helping me a ton here and I hope you don't

mind me picking your brain on a couple of other things.

Okay....first on the septal infarct. The IM doc swears that while that

is clearly what the ECG said, that I did not have an actual infarct.

His guess at one point was myocarditis, although there was not any

testing done when I was in the hospital the first time on my heart (no

echo in other words), other than the three ECG's. Further information

for what its worth......throughout the course of all of this, my CK-MB

has been elevated (has ranged from 45-56.2 with ref range of

0.0-3.6)...Troponin has stayed in the normal range the whole time....I

responded well to nitroglycerin both times having the pain taken away

completely...cardiac catheter was normal. I have had sinus tachycardia

with the last two ECG's, first one my BPM dropped by 39 I believe,

second one they were increased by 56 I think (can't ever find the paper

I need when I want it!!). And finally I am experiencing a heart rate

around 120 still several times a day. No pressure or discomfort though

since the hospital stay 2 weeks ago. Does any of this mean anything to

you!!??

Yes and no on the myositis and mito being treated differently.....only

because there is no real treatment for mito. Interestingly though I ran

across some postings on the MAA message board about others using CoQ10

for myositis, and this is one of the MAIN treatments for mito. Do you

know anything about this at all???? Also saw mention of LCarnitine and

this and the CoQ are the basis for almost every mito patients cocktail.

Both of my kids are on these and have been since February for their mito

and it has made a very nice difference for them. I am seriously

considering starting the CoQ...not sure I have a thing to lose at this

point!!! Yes, though, it is important that we determine whats happening

over here. Ultimatly, my guess is that this is mito primarily and the

myositis secondarily.....gotta treat em both though no matter what and

it seems to me that maybe this can happen actually somewhat

effectively. Lord I hope!! We are working on getting to Cleveland

where the kids mito doc will see my sister and I both also and do some

further testing. Could be a few months though, so we gotta work with

what we have here for the time being. Ignorance of mito is prevelant

everywhere, and here is no exception, so I am not even pushing that

right now. Just need to get the most pressing issues under control

first.

No real previous medications at all to be honest!!! Prior to May of

this year it had been since I was a child since the last time I had even

taken an antibiotic, much less anything else. I have never had the need

to take anything for more than a very short time, or intermittently.

Since May I have taken one antibiotic (1 week), Vioxx for a total of 2

weeks and discontinued because it was not working and was causing some

very very mild ankle swelling (with the recent issues connecting it to

heart issues I decided it was not worth it), Ibuprophen pretty

consistently till late July (800-1600mgs per day) to deal with the joint

inflammation, 2 Medrol packs (one in May and one in early August),

Zoloft for 2 weeks but discontinued due to side effects in June, and one

week of Tylenol in late July when my liver enzymes came back abnormal

for the first time.

Thanks for the feedback on the blood work. I do realise that many of

them are just outside the ref range, however, my concern is over how

MANY of them are, especially when they lack a connection to the

myositis. Am I off track on that?? There were a total of 70 done, with

40 of them abnormal.....would this be the case with anyone that had this

kind of massive blood work done just because of the sheer volume of it

all???

Yes on the WBC's...they have been elevated since day one. Have ranged

from 11.8 to 20.5 (ref range 4-10.5), with the highest number actually

coming at 12 days into the prednisone. Last blood draw they were at

16.5. When I went back into the hospital they tried to explain to me

that the elevation could have been because of the

prednisone....something about them " gathering " and causing the

elevation. Thing is, I did not know at the time that the WBC's had

actually been elevated the whole time, even before the pred.

Here is my most recent mind twister and maybe you can help here

too......I basically get what the Lymph% is in the diff. What I cannot

understand is why, considering my elevated WBC's and others in the diff

showing inflammation, my Lymphs are FALLING and continue to do so. The

Lymph% was 19 on the 9th (first admission to hospital) and on the 28th

they were down to 10 (ref range 33-38). They had risen some, both off,

and then on pred in the middle of these two numbers, but the highest was

only 24.4. What am I missing here???

Also....my SEGS are rising still too.....74 on 8/9 and 84 on 8/29 (this

is pre and post pred) (ref range 33-57). Is this just another

inflammatory response?? And yet the pred is not lowering it but its

rising....UGH.

Also find it curious that my Aldolase is continuing to rise even when my

CK is dropping......

Yeah, I have a million questions!!! Promise to try and not overwhelm

with them, but any thoughts you have are appreciated.

The neuro was checking glucose again on the blood draw on Friday, so I

guess we will know soon enough whether its continuing to rise or not. I

have not lost that much (2 pounds more than the water weight I put on in

the hospital), but am not gaining at all on the pred and I know thats

not the norm. IM doc was shocked when I walked in his office 4 days

after my first discharge having lost 20 pounds!!! He just wasn't around

as I tee-tee'd my brains out for those four days....LOL....I wasn't

surprised at all!!! Course, I am also taking Lasix, which is keeping

the water from accumulating, and even pushing it out, so that is likely

playing a role I know. I promise to keep them on this and not let it

get out of hand.

THANK YOU for the heads up on the gum issues and pred!!! Its a relief

just to know I am not crazy.....I will ask my dentist about the

mouthwash.

Thanks also for the feedback on the Prednisone and how to take it. I

will definatly ask about the Xanax when I see my....well, I guess my

rheumy.....kinda lost on doctors right now and who needs to do what.

Story of my life I swear!! LOL I'll get it worked out and thank you

for the feedback on it.

THANK YOU again for all your help hun. Hope your taking care of

yourself!!

BIG hugs,

September 9, 2001

Oh Teddi...I LOVE it!!!

I do sometimes wonder if they should allow first time parents to actually

name the child before they have a chance to come out of the fog they are

in for the first...well....month!! LOL My parents gave me the

lovely name of Sherman for a middle name. Now...had this been a family

name, well I could have dealt with that, but it was NOT. Not real

sure where they came up with the name...me thinks there was *something*

influencing them at the time (well atleast my dad)...they were the proverbial

hippies, what can I say....LOL. However, while this was a pain in

the ass name to keep hidden from people as a adolescent I did thank the

lord every day that I had not been a boy as my name would have been Forest

and I assume Sherman would have been the middle name there too.....can

you imagine!!! Have always heard chants of "sherwood Forest" anytime

the thought has crossed my mind....LOL. I was more than thrilled

to drop Sherman from my name when I married, more than happy....LOL.

I tried DESPERATLY with my childrens names...... Chancellor is

my son and he goes by Chance... is my brother that we lost 9 years

ago now and Chancellor was a name that hubby and I just thought was unusual

but nice. Then there is Madison Noelle.....Madison was NOT a popular

name when we named her dangit!! LOL Noelle is a combo similar

to yours....my grandfather was Noel, and my mother's (his daughter) middle

name was Noella. She was teased though because her name, which I

WANT to say here but am thinking better of it, was VERY rythmic and was

the favorite for the music teacher to tap out as he said her full name

each and every time....LOL. Noella didn't do anything for me, so

I just changed the last letter!! And then there is Abigail Aston....this

was the hardest name for us to come up with and we tortured ourselves....LOL.

Turns out its a great name for her and Abigail is not one you hear that

frequently. Aston is a family name on my hubby's side, and since

the other two had ended up with my family names, and well, we didn't have

a CLUE what to put with Abigail, it worked....LOL. We'll come up

with a much better story for her though<grin>. Course, you all

don't know our last name....McNair....and hubby is ....SOOOOO...we

ended up, really quite inadvertently, having a family of very irish/scottish

sounding names!!! I *think* it works!!!! Course, I am sure

they will at some time wonder what in the world we were thinking anyway....LOL.

As a few friends and I say, we are not actually saving for college for

the kids, but the years of therapy they are no doubt going to need having

been our children...LMAO.

Thanks again for making me smile today Teddi....your on a roll with

me!!!

BIG hugs,

TeddiFromOK@... wrote:

It just kinda happened since no one could

pronounce my name right.....Ya see. my dads

name was and my moms name was

Hetta so what chance did an only child have???

Teddi

mailto:teddifromok@...

September 9, 2001

I played it safe when I named m kids.. -

, and (after my dad)

My mohers middle name was Lucinda which

I thought was beautiful and wanted to name

that......as you see I was thwarted!

Teddi

mailto:teddifromok@...

September 10, 2001

Cari,

Thanks so much for telling me about the magazine. I will look for it and

get it for Louise. I'm going to her house this afternoon to see what I can

do to help her, but after talking to her Sat. and Sun., she seems to be

doing very, very well! We won't know about the lymph node results for a week

or two, but I'm praying hard. Thanks again... Annette