This Thursday will be 3 wks since I had a thigh muscle biopsy. I've done a bit of reading and know they are looking for a type of muscular dystrophy: polymositis or myositis.
The doc that wrote the book I read said that after he saw his patient's muscle under the microscope, he admitted her to the hospital for massive steroids and other drugs.
Yikes! I do not want to go the hospital or be on steroids....I go berserk , gain wt., can't sleep, break out.....it's just awful.
Hopefully, my case will not be considered as desperate as the case he mentioned.
I'm just nervous and want to get the diagnosis asap so I get on with it, whatever it is. Tinker :-\
Good luck Tinker and I will keep you in my prayers. Try not to worry until you get the results. I know that's easier said than done, but try. ;D
Hugs, Pooh
Hang in there Tinker!!! Like Pooh says, please try not to worry - and I'm the biggest worry wort you'll find! ;D
Take care -
Patze
Hey tinker,
I know its hard not to get caught up in what you read but try to just put it out of your head until you get your results. its probably one of the hardest lessons we have to learn with this little gift we have. My counsellor always tells me to concentrate on what IS rather than what MIGHT BE because what might be may never happen and you cant get those moments back.
I will keep you in my thoughts and hope that you get good news
Pud
Hi Tinker :)
I think that waiting for test results is just the worst time. Our minds go into overdrive and we come up with the worst case scenarios everytime. I think we're just built that way!
I hope you don't get your worst case scenario but whatever you get - once you have it - you'll deal with it and we'll all help any way we can.
Good luck with results. I hope they point a way forward.
Take care - Scottie :)
I have been following your muscle bx thread.. I Know I haven't commented yet.. but I am waiting to hear how it goes too..
I had one done a couple of summers ago.. and it didn't show anything abnormal.. I am hoping that maybe the next time they will find something..
Good luck and keep us posted
Hi Tinker
I know it's a worry waiting for results, but try not to waste precious energy (us sjoggies have so little to begin with!) worrying about things that are beyond your control. I understand about the steroids, I was just the same on them, and wouldn't relish taking them again unless absolutely necessary.
Truly hope everything turns out OK for you.
Wen
Tinker,
I can certainly relate your anxiety and in many ways feel that the wait can be worse than the dx. Whatever comes are way, we have to deal with it. The anticipation is often worse then the realization. Anticipation of a dx has a way of consuming our thoughts and adding to our stress.
I hope everything turns out well for you and some of your stress is relieved.
You guys are GREAT! Thanks for taking the time to help me out. :-* I'm an old hand at waiting for results.......but this time I'm shizcho! I guess it's because my thigh muscles ache so much for absolutely no reason. My neuro made me feel she was sure I had a problem. She thinks its because of the Replicon silicone implants I had (prophylactic for cancer.) In fact, the book I bought to learn more about autoimmune disease mentions this in his book.
I know that many women have no problems with silicone implants, but mine were coated with a polyurethane covering that completely disintegrated in my body. When they removed these darn things, the polyurethane covering was gone. It's in my body and that's when all my trouble started. Wish I could turn back the clock and avoid those polyurethane coated implants. Thank God they took those coated ones off the market last time I checked. There isn't enough money in the world to buy my health back.
Sorry, just feeling down about being in bed all the time. My daughter is also in constant pain (RA), my grandson is in Navy bootcamp, and things are just so wild. My other grandson just got out of the hospital for cellulitis and staph infection of the lower leg and elbow. He isn't out of the woods yet! He's taking 3 wks of IV antibiotics but still may have to have surgery.
Kelene, what were your symptoms that prompted the muscle biopsy?
Hi Tinker...
Is 3 weeks a normal waiting period or should you maybe start 'buggin' them a bit on the phone.. Just a thought... Hang in there...
Hey Seabreeze,
Yes, those thoughts have entered my mind. It takes so long to call......5 min. on hold, and then you usually have a kid tell you that "your labs are not here. Call back next wk. The doctor is on vacation, etc... you know the drill. :)
Tinker
I have weakness.. Mostly in my proximal muscles.. SO I have alot oftrouble climbing stairs lifting anything overhead.. actaully lifting much period , the front of my neck is weak .. so holding it up is difficult. If I am laying down I can't lift my head or legs off the ground. I don't have any pain with this weakness in general.
SO do you have a follow up appointment
Kelene, the neuro (who ordered the muscle biopsy) said to come back after my biopsy. I should make an appt. tomorrow cause surely I'll have my results by the time I see her.
Your weakness....is it Myesthenia Gravis or Polymyositis? I've read about this but, as usual, I can't remember what I read. I'm so sorry you have weakness to that extent. It must be very hard to manage. It doesn't sound like you can work.
If I have this, I'm hoping to take IVIG.
Tinker,
My heart goes out to you with so much on your plate. I'm praying that your results will come soon and be only good news. As an Army Mom, your grandsons (BOTH of them) are in my prayers.
I had MRSA last year. The 3 weeks of IV antibiotics did the trick and I've been clear ever since. Mine was in my face and it wasn't pretty, but it's ALL gone now (I'm still not pretty, but at least I'm not as bad as I was!)
I also understand your concerns about steroids. I just finally got off a 2 year run last month. I know they're no fun at all, but if it's what you need to get better, I know you'll get through it. We'll all be here to help.
Hang in there and try not to drive yourself nuts. You're in my prayers,
Tracy
Thank you, Tracy. And I will say prayers for your son. ♥♥♥ Tinker
Tinker I believed I have replied under two threads so I am not sure what I have told you. Looks like myositis acts like myositis repsones to drugs like myositis... and from a history of skin rashes .the word dermatomyositis has been mentioned. But my muscle bx was normal a couple of years ago. I don't really want a second one but might be the case. My EMG are borderline.. they show some mild changes to the muscle.
I can work.... oddly enough but I have had to make alot of changes in what I do and I am currently only working very part time.... Just enough to try and pay the bills... but where I work one day a week is up a huge set of stairs.. so I never sure If I am goin to make it up them... and today will be interesting.. I am currently at my weakest.... I am not crawling up the stairs at work.. soooooooooooooo... ( I do that at home )
I am still waiting to hear... so I can't imagine how you feel
Kelene, yes, it does sound like dermatomyositis with the rash involved. I can't believe you are able to work. I really miss working , being with my students, and feeling like I had an identity. Today, I feel like an old woman who lays in bed with a heating pad and medication. I'm not THAT old but sure feel like it.
While having a negative result would be good news, I'm actually hoping for a dx to get the IVIG. My neuro thinks it's GREAT. She said I'd feel strong in 30 min. That's not what I've read.
Kelene, are you waiting on more tests, or did you mean you were waiting on my mbiopsy test?
BTW, I did called and got an appt with the neuro, called the surgeon yesterday and today for m biopsy results with no luck so far. I'm so exhausted.......