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A Few Things to Report


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#1 debonair susie

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Posted 29 April 2008 - 06:54 AM

For several weeks, I've been jumping through hoops... trying to get answers to only ONE thing: What's with the goiters?!! :blink:

I know I'm not alone... but we all get tired of going to the doctor and no answers. For those of you who know my feelings about diagnostic equipment... or the diagnostitians... I don't have much faith in them B)

The endocrinologist sent me to ENT, the ENT sent me to the gastro, back to the endo, then to the internist, back to the endo, then the internist, last Thursday... she was irritated that the block of time for me was so short, with all that's going on withme. I won't go into detail that visit, but suffice to say... it wasn't pleasant :unsure: .
Endo ordered another thyroid ultrasound for yesterday...to see if goiters grew (last one in October, b/4 needle aspiration), also had mammogram and rheumatologist app't yesterday.

My rheumatologist app't...
Sheryl and Sam - I asked about the skin scores. Bear in mind that she's a researcher also and she told me that normally, rheumatologist don't do skin scores... unless it's for a study.

I let her know that my pain level is relatively low, as compared to usual, so I haven't been taking the Mobic for awhile. She was glad, as I also told her about my ongoing gastro issues... esophageal and motility.
She looked at my fingers and said my nailfolds look really good and she feels I'm doing quite well. She said, "I see you as CREST/Limited". I said, "Yes, that's what DR Smith thought. I'm NOT looking for more problems, but at the onset of my diagnoses... I had skin involvement withMOST of my body". She told me that she's going to the archives and pull up the 2 ANA patterns and see how telling they are... I remember they were both negative, but I don't remember the numbers, so we'll see what they say.

She read the notes of the endo.. he wants me to take 50,000IU of vitamin D for 3 wks, along withthe mgs/day I already take.
Absorbing much of anything is a problem for me.

I'm lucky I got all of that done yesterday, as the schedulers had my app'ts overlapping for yesterday... and at the wrong facilities. Despite the mix-up... I was glad they could work me in... I guess

I hope you can see why I put off posting for as long as I could... this really isn't coming together the way I had hoped... as in... still no concrete answers

I hope the sun is shining and the temperatures are wonderful where all of you are!
Tonight, hubby and I will go to 7 yr-old grandson's first baseball game of the season, plus his coach is my son, whose birthday is also today... the big 33!

Hugs,

Susie
Special Hugs,

Susie Kraft
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#2 Sweet

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Posted 29 April 2008 - 07:50 AM

Hey Susie,

Thanks for the update. Goodness you do have a lot going on. But one of the good things I picked out of your post is your pain is not as bad right now and for that I am so happy! It overshadows everything.

Hang in there.
Warm and gentle hugs,

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#3 Guest_Sadie_*

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Posted 29 April 2008 - 08:02 AM

Hi Susie, Thank you for letting us know what is going on with you! You sure have been through alot. I hope you can get answers soon. Glad to hear that you don't have much pain right now. Hang in there!

Sadie

#4 Sheryl

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Posted 29 April 2008 - 08:17 AM

Susie, Thanks for the update. Even though you still don't know what the doctor plans on doing with the goiter. If they were worried about the growth the doctors would have already removed it I would think. Keep us informed when they give you any new news. I was in a study that is why I happened to know my skin score when we were talking about that the other night. Thanks for remembering to ask though. It is good to know why some people know these things and others aren't made aware that they could know this information. It is cold here. High this morning was 33 when I woke up. It is close to 50 out but no sunshine so it feels pretty cold out. You have the nicer weather. Have fun at the baseball game. Don't get a sore throat yelling.
Strength and Warmth,
Sheryl

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#5 debonair susie

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Posted 29 April 2008 - 10:03 AM

Thanks, Sweet...

Yup... I feel so very fortunate, that I'm at low ebb, where the joint/muscle pain is concerned... especially withboth Sclero and Fibro!

Sadie, I really appreciate your post, too. How are YOU doing? Any answers for you, as far as what plagued you on your birthday weekend? I so hope you have gained strength from that go-around. Continue taking care.

Hi Sheryl...
It's just like being on a merry-go-round, that's for sure.... You know how long I've been on this thing, but I don't feel a bit closer.
Normally, our temperatures... this time of year are in the 50s, but it's 80 right now, we are so dry and nighttime dewpoint is low 20s.
May we all get the weather we hope for!
Oh, this Grandma won't be yelling... the last few days, I've had a "horse in my throat" :P

Hugs, Ladies!
Susie
Special Hugs,

Susie Kraft
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#6 janey

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Posted 29 April 2008 - 11:46 AM

Good grief girlie! I'm sure you felt like a ball being bounced from one side of the clinic to the other! I'm assuming, actually hoping, that all those people were in one building. It does sound like you have a good rheumatologist, which if you're going to have a good doctor - that's the one that needs to be the best in my mind. Of course a good cardiologist (in my case) doesn't hurt either. :)

How on earth are you going to take 50,000 IU's of vitamin D?!?! I take one 1,000 IU pill a day. Do they make them bigger than that. I hope you can swallow it? I know when I was on potassium I couldn't take the pill so they prescribed liquid. SO MUCH easier to swallow.

Thanks for the update and we hope to hear good from future visits and tests.

Big, big hugs,
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#7 truman

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Posted 29 April 2008 - 12:00 PM

What I do see Susie is still an upbeat and positive attitude. Sometimes I lay back and look at these professionals and say "What??????????". So unreal, but it brings you back to being your advocate.

Still going crazy with the hives. Last night they covered my whole body and reached my earlobes! Spoke with doctor today and he told me not to expect results overnight. Told him his Pepcid AC just wasn't doing it with regard to reflux and I needed to be back on Nexium, he said no. So now I'm on Zyzal and Pepcid AC in the AM, Zyrtec and Pepcid AC in the evening and he said if all else fails, to take a Benadryl. I swear, my heart feels like it's speeding 100 MPH.

Hang in there girl.................
Tru

It is what it is...........

#8 debonair susie

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Posted 29 April 2008 - 12:17 PM

Ya made me laugh, Janey.... thanks for that! :D

A bouncing ball IS a great description! Yes, they were in the same building, but had they NOT been ... I would have needed a helicoptor to get from one place to the other, as the facilities are at opposite ends of town!

Actually,I was as surprised as you about the vitamin D. I was taking it as you, but they gave me a prescription for the vitamin D...It's a gel cap, very small and easy to swallow. Plus I only take 1/wk for 3 wks.

Hope you're doing as well as you can be and ableto enjoy spring a bit.

Big, big Hugs back to you!

Susie
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Susie Kraft
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#9 omaeva

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Posted 29 April 2008 - 12:52 PM

I'm sorry you've been getting the run around like that. It's so frustrating!
I hope you get some concrete answers soon.

#10 Karenlee

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Posted 30 April 2008 - 01:21 AM

Susie,

Don't ya just love running around like a headless chicken trying to get answers and then have more questions than answers when you're done? :P Sorry you're going thru that, but keep up that positive attitude. It's inspiring to me and everyone else I'm sure.

Karen

#11 debonair susie

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Posted 02 May 2008 - 06:26 AM

Thank you omaeva... for your concern... I'm sure it will all get figured out one of these days. I know I'm not alone when it comes to the waiting game, that's for sure!

I LOVED that, Karen! I really appreciated your post.
I apologize for not replying sooner... been on grandbaby duty the last few dsays, as well as baseball games.
Must share my pc time with my awesome grand :rolleyes: babies... I SO love this "duty" though!

Hugs,
Susie
Special Hugs,

Susie Kraft
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