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01/07/2009 08:02 PM

Here we go again...

KayDesigner

Well I just wanted to let you guys know that I have yet another doctor appointment tomorrow - Rheumatologist this time. He is the new doctor I am checking out as the last one was just so awful. Mac is going with me this time, thank goodness - I think that will help.

Anyways, I wanted to let you know that if you don't hear from me tomorrow, then you know why. Last time this happened, Monday, being out and about took me back a bit and put me in bed for a couple of days, but hopefully tomorrow won't be so stressful and hopefully after this one, I'll have some blood left.Dizzy

Sorry, kind of feel like I've let you guys down a bit by not posting as much, but things should be back to a bit more normal soon.

THANKS!!! and I'll talk to you guys later. **I'd appreciate any prayers**

Hugs,

Kay

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01/07/2009 08:08 PM
thomasann
thomasann  
Posts: 681
Member

I'll be praying for you , Kay. My Dr. today tells me I need to walk more. Just take your cane and walk he says. lIKE IT'S THAT SIMPLE. I am really tired of Dr.s Maybe I haven't found the right one in Va. yet. Mt Dco in Colorado would never have told me that,.>.Good luck tomorrow with your rhumy. Hope he helps a bit.

Love ya


01/07/2009 08:12 PM
Janilee

Good luck tomorrow Kay. Bring me back a pistachio ice cream cone.

01/07/2009 08:18 PM
Nitalynn
Nitalynn  
Posts: 1404
Senior Member

Good luck girl. You go do what you have to do and we'll be here when you get back.

01/07/2009 08:31 PM
webflower22
webflower22  
Posts: 160
Member

I'll be praying for you and good luck with this doctor. I saw my doctor and she said to me she doesn't have fibro so don't know how the pain is for me. She did offer to give me some pain meds, I told her I wasn't ready to do that yet. She knows how worried I'm about getting addicted to the meds. So she order blood test to make sure nothing new is going on since, I've in so much pain and so fatigue. She did invite me to go to church with her, I thought that was weird and nice. She did increase my Cymbalta to 120 mg a day. I hope that works. Sorry got off the subject, Good luck and hope this doctor is good suit for you Kay. Smile

01/07/2009 08:41 PM
Kithurts
 
Posts: 16
Member

I hope it goes well, Kay. Keeping you in my prayers. I think it's great you've got someone going with you, this always helps me.

01/07/2009 09:46 PM
amommy02
amommy02  
Posts: 1891
Senior Member

Hope your appointment goes well. And you haven't let anyone down.

01/08/2009 12:30 PM
Janilee

Well? how'd it go?

01/08/2009 02:06 PM
amommy02
amommy02  
Posts: 1891
Senior Member

I guess she's too worn out. We'll just have to wait for an update. We're keeping our fingers crossed for you Kay!

01/08/2009 08:16 PM
KayDesigner

Hello all - sorry haven't posted until now but I have just felt too bad too.

The doctor was awesome. I didn't know they made them like that anymore and I feel I have been truly blessed to find him.

He spent close to 45 minutes with me going over everything; talking to me; talking to Mac; doing certain physical exams, etc...

When all this first started, I went to my PCP and he ran some blood work on me that showed I had elevated CK levels. When my first JERK rheumy saw that, he simply said that it was nothing and wasn't even worth mentioning.

The doctor I saw today, told me that this wasn't normal - that it basically showed I had inflammation in my muscles. I was sitting in a regular chair and he told me, 'Without pulling yourself up, stand up.' I was like - ummmm, OK, whatever. I couldnt' do it - I know my face had to be turning red from trying so hard, but I just couldn't do it, then my thigh muscles started cramping up as well as my neck muscles. I have to say, it was a bit creepy because I just really never tried or thought about it before.

So after talking, doing a thorough exam and looking at my past blood tests, he told me that he thinks that there is a possibility of me having something called Polymyositis or Inclusion Body Myositis.

So I got back on the 'blood train' so that they could check my CK levels again. An interesting thing though, he said that is the levels were still abnormal, that the possibility was pretty good that this was the cause. He went on to say that you could have this even if your blood levels came back normal. He went on to say that he has seen patients that had normal levels, but because of symptoms and exam, he would send them for a muscle biopsy that would show inflammation and therefore show what type of myositis they had.

He said I would find out my lab results on Monday - if there were abnormal, then it is a pretty good chance that this is what is the diagnosis. If the levels are normal, then he still wants me to have an EMG (?) and a muscle biopsy since I had the abnormal results to being with and with also my other symptoms.

So that's where it stands for now. Mac asked him how he felt about Fibromyalgia, just to see what he said and the dr. said, 'Absolutely, I thoroughly believe that Fibro is real; however, because of the symptoms, exam and blood work, I have to rule out the other first...but yes, I have no problem diagnosing someone with Fibromyalgia.' Mac basically just wanted to see how he felt about it.

Anyways...I have hurt, cried, been nauseus, extremely fatigued and just plain mentally and physically exhausted, so I'm gonna give it up for the night. But I wanted to let you guys know what happened.

I will check back in tomorrow and thank you ALL for your prayers and support. I truly felt them today as I feel so blessed to have this new doctor. I am a very blessed to have such caring friends as you all are.

Hugs and good night,

Kay

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