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#465824 03/28/12 08:02 AM
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Hi Yall,...I've been having the strangest couple of weeks, medically speaking and was hoping yall could help me sort through some things out and maybe help me to understand a couple of things better...basically, I decided to go to the dentist and have my annual cleaning & x-rays before my surgery, well, my dentist saw some serious bone loss on my x-rays, after he came in the room and looked at my x-rays, he came over and examined my mouth inside and out for about 5 minutes, then he told me about the bone loss issue, to show me, he compared the x-rays from last year to the new ones and drew lines where the gum is and and another line where the bone is/was/should be, but you can plainly see it, across the whole lower jaw, I've lost a visible 1/3 inch of bone in one year, across the board, so he referred me to a specialist but never told me what he thought it was or what he thought had caused it, then the next day, I went for my pre-op labs & chest x-rays and got a little bad news there, I have to stop my Enbrel & Methotrexate (effective immediately), I have to be off it for 4 weeks before surgery and 4 weeks after...and I've been flaring for about a week already, so I'm not looking forward to that at all... no next stop, my PCP, this afternoon, for a kidney infection and corti-costeroid(sp?) shots in the bursa sacs of the hips...well, I've been flaring and it's 85 degrees out already, so I've been wearing loose clothing the last couple of weeks, I've been in bed most of the time, so today, getting dressed for my doctor appt., I get out a pair of skinny jeans and a tee-shirt that I know I've worn in the last month or so and they felt really baggy but I was running a little late already and I'm really hurting bad in my hips, I can hardly walk, Mike asked our son, Brandon, to bring me to my appt. and he was waiting, so I didn't really look in the mirror, I just knew they were big on me... I get to the doctor's office, they call me to the back, I step on the scale and I've lost 20 pounds!!! shocked , in a little over 2 weeks, I was just there 2 and a half weeks ago, so I go to the back and the Doc asks me a barrage of questions, I was back there so long that Brandon came back there to see if his Mom was okay... heart Anyway, I answer his questions, basically: yes, I've been having night sweats lately, a couple times a week, severe bone pain from head to toe, the normal extreme flare (pain level of 14 on a scale of 1-10) but somehow it feels a little different, I can't explain it but it's just different, it's got a 'bone on fire' feeling, low-grade fever, no appetite...so I tell him all of that, he looks at my dental x-rays(I had em in my purse)...so to shorten this up, he said, "I don't want to alarm you but this is NOT good, I want you to prepare yourself,....(I don't remember what he said here but he said something else)....and I think it's time to go to a higher level narcotic for pain management and I will be following all the reports (everything is sent to him by all of my specialists) and you call me if you need aaannnyyytthhiiinnngg!"....it's just that I've been getting the 'kid gloves' treatment everywhere I go lately eyes and that is worrying me a little bit...I'm still mulling all this over, trying to really think but I don't know...it seems like a lot, only 2 things really got my attention, the dental x-ray and I was really shocked that I'd lost 20 pounds, I knew I'd lost a little but I thought it was about 7 pounds but I'm tall, I'm 5'8" and with the weight loss, I now weigh 125, I just haven't had an appetite lately but I've been making myself a eat a little something here and there but I do that when I'm flaring, which these last few years has been about 90% of the time but I don't usually drop more than 5-7 pounds...this is nuts, I hope I don't lose anymore... ohwell Well yall that's it...sorry for such a long post and thanks for letting me get this off my chest!! heart ...any thoughts or advice on all of this will be so appreciated!!! rainbow


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Aug 2011
Posts: 501
G
Veteran_AS_Kicker
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Veteran_AS_Kicker
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Joined: Aug 2011
Posts: 501
Michelle, I am sorry you going through even more - know I am alway here for you.

Hugs, Kisses and much love

Gerri & Makaylah


KickAS member since 04/22/06
Psoriasis(72), AS(2006), PsA with Spondylitis(2011),Vitiligo (69), sleep apnea (2004), Bronchial Asthma, many allergies, anaphylaxis allergy to sulfites, diabetic, Vitamin D deficient - Celiac/fructose intolerance/malabsorption - many co-morbidities
Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,595
Well darn it Michelle - sometimes life just doesn't seem fair, does it!!! hugss

At least it sounds as if your doc has your welfare foremost in his mind and he will work overtime to try to find some relief and hopefully answers for you ASAP!

It's scary when they think something's going on but they can't quite join the dots yet, so you are left in the dark at the edge of the precipice! eek2

Take care of yourself in any way you can - I'm sorry there's nothing concrete we can do for you except "listen" and understand that you're not in a good place. hugss again to you, my friend....


Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3
Joined: Jan 2012
Posts: 30
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Member
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L
Joined: Jan 2012
Posts: 30
So sorry to hear that you are going through such a bad time at the moment. It sounds like you are in good hands with your doctor. Sending you warm wishes and positive vibes.

Gerri54 #465831 03/28/12 11:14 AM
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
OP Offline
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Originally Posted By: New Beginnings
Michelle, know I am alway here for you.

Hugs, Kisses and much love

Gerri & Makaylah


Oh Gerri, I do know...hugss and I'm thankful for it!! Kiss Makaylah for me... :hugss;


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Dec 2010
Posts: 456
W
Warrior_AS_Kicker
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Warrior_AS_Kicker
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Joined: Dec 2010
Posts: 456
Michelle: I am so sorry you have to stop your Enbrel and methotrexate due to your health issues. It sounds like your doctors are being proactive to keep you comfortable. I'm going through a similar situation due to a stomach ulcer. I have been drinking a lot of gluten/dairy free vitamin shakes with my meals for the extra calories and vitamins. I too, suffer from weight loss. Also, I am finding, taking a 15 minute walk is helping me- even if it hurts like hell to walk.

Gentle hugs!

Shari


Meds -Hizentra, leflunomide, Prednisone
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
OP Offline
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
No it doesn't seem fair, not for any of us, Louise... ohwell Yes, my doctor is awesome!!! As he's working his way through the rooms, you can hear him laughing, he's really close with his patients and I can ask him absolutely anything and feel comfortable, he's been fantastic!!! He reminds me of Dr. Cliff Huxtable... grin2 It is alarming, mostly because of the weight loss, I'm not stressed...or let me rephrase that, I don't have any abundant stress, my only 'worry' is this health scare but I haven't lost any sleep over it yet...I'm losing some sleep due to pain ...but here at KA, we're no stranger to that! crazy Thanks, Louise....you take care too, big, big hugs hugss


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
OP Offline
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Hi Langer and welcome to KA!!! smile It really is a GREAT place!!! thanks for the warm wishes, I really appreciate ... hugss


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
OP Offline
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269
Hi Shari, thanks for the tips, I was just wondering about something like that tonight...I'm sorry to hear that you're going through a rough patch too... hugss I was talking 3 to 4 short walks a day but my hips started flaring real bad, so I went in today and got shots in both of them, they should feel better in a couple days, I 'll be able to get in the pool pretty soon, it's been 85 degrees here for about 2 weeks now but that water is still a little too chilly... grin2 Thanks again... smile


Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF
Joined: Jul 2010
Posts: 1,190
V
Steel_AS_Kicker
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Steel_AS_Kicker
V
Joined: Jul 2010
Posts: 1,190
Michelle,
I hope the best for you, I am praying for you and especially that you feel better. Please tell what happens at your appointments and test, you are in my thoughts.
Take care.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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