Round1
04-09-2008, 05:58 PM
Do you know you spend half your life wishing for days to come and appointments to hurry up and just get results, I have spent the last week wishing for the 10th................ now it is tomorrow, and I am here saying we wish for the day to arrive and it always does, and now I want a few more days !!!....... No, I dont really I want answers. It was last week I was told that my blood results have come back positive for HLAB-27 which is a gene for Ankylosing Spondylitis and with all my symptoms of course I have myself diagnosed !. On One hand I am praying for this to be true as I feel it is a route of different medication and if it was controlled I might have a better quality of life.................. on the other hand it makes difficult reading....... and also it is harder to detect in woman and often goes on for years unknown........
One thing I do know is I can't continue living the way I am....... I cant and will not accept to be left in this amount of pain, so please folks just a few prayers tonight that I will have answers and some much needed relief. With the time difference between us, I will possibly have the answers when ye wake up over there !!! only I do know is I wont be able to stay up after the appointment and will need to hit the bed......... but I promise as soon as I am vertical I will let you know the results............... please say a prayer. I will accept what is handed to me.......... but need relief from this pain.
Round1 Thank you spiney friends..... you are the ones that know what pain is........
One thing I do know is I can't continue living the way I am....... I cant and will not accept to be left in this amount of pain, so please folks just a few prayers tonight that I will have answers and some much needed relief. With the time difference between us, I will possibly have the answers when ye wake up over there !!! only I do know is I wont be able to stay up after the appointment and will need to hit the bed......... but I promise as soon as I am vertical I will let you know the results............... please say a prayer. I will accept what is handed to me.......... but need relief from this pain.
Round1 Thank you spiney friends..... you are the ones that know what pain is........
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123dietdrpepper
04-09-2008, 06:48 PM
You know I will be praying for you dear. I am so sorry that you have been suffering so and I pray that you receive a concrete diagnosis so that you can receive the proper treatment to relieve some of this pain. (((HUGS)) :angel:
cmpgirl
04-10-2008, 10:00 PM
Hey Round1: Just wondering how it all went. I thought about you last night and today and said a few extra prayers. Hope you are OK and that the news was good in the sense that you have a diagnosis and can be treated properly. Take care and God bless, cmpgirl
Round1
04-11-2008, 11:17 AM
Thanks diet and cmpgirl, well what can I say only it was a total total waste of time............. he had be diagnosed in a min saying it was just fibromyalgia,,, did I get to say much no.... did I get to explain anything no.. He told me unless i kept going I would stay like I was and also get worse !! did he examine my back no. Just pressed on my arms were they sore and my legs,...... did he press on my spine etc no.......... did he look at the MRI's and X-rays...NO. ........ but yet he told me my fusion was unnecessary....... This is what I have !!!!! Fibromyalgia and chronic back pain. .......... and it has all stemed from my back. Did he take any notice of the HLAB-27 being postive NO, he said i would have bone abnormalities if i had it............ I said that takes awhile to appear though doesnt it and he said yes , but you dont have it !. The minute I walked in he had these list of questions............. and rattled them off and it was like okay this is what you come under as you dont have R.A. so this is your area I will slot you to. I was furious,,,,,,,,,, so so so mad. When I got home I phoned the pain managements office and told them, they were in shock and they said the reason I was sent there was they had great concerns over this HLAB-27 and the way my back is and life !. So it is now back to the Pain management and let him be my guide. I never ever felt like walking out on a Dr. before but I was so so close to saying get lost you arent even listening. He also told me my life was no fun and sure as hell no good family life you are 38 not 83. To be honest he was a money grabbing "bee". I am so so so mad. I cant even go on with this post now as I promised myself after talking to the pain management secretary I would forget about his visit and just deal with the pain management specialist and if he feels there is a new for a second opinion on the HLAB-27 then that is what I will do...... I just find this is a road with no end............ What do you make of it Diet and cmpgirl? this is who we trust and give our money to?
Round1
Round1
cmpgirl
04-11-2008, 11:58 AM
What is it with these *$&##! rheumatologists??? Your experience could have been the same one I wrote about a month ago. The one I saw did not give me the opportunity to tell him my symptoms, didn't do any more than a 1 minute range of motion exam, said he'd order labs and left! Oh yeah, I forgot... didn't even care that my BP was 190/129!
Have they had some world summit where they have decided that they don't have to do their job anymore! I am so sorry you had to go through that. I know it's small consolation, but I can relate to exactly what you are feeling right now. I'm still angry, and now I am even more so, that it happened to you.
Thank God your PM was as appalled and shocked as you were. Maybe he can do some research and find a rheumy who gives a &^#$. Or maybe he can order more extensive tests, himself. While I wouldn't doubt you have musculoskeletal issues as well, I would think that a positive HLAB would have been an indicator that it was possible for you to have this disease or something similar.
Please know that I am with you, in spirit. I had hoped and prayed that you would finally be able to get some answers. If I were there, I'd give you a hug and hold the punching bag for you. I am beginning to feel like we need to start a revolution or something. This is just unbelievable! It sounds like your PM is on your side and has your best interest at heart.
Try to hang in there, my friend. I will continue to pray for you to find some peace of mind and the answers you so clearly deserve. I'll be here for you whenever you need to vent. You know you have my full support and affection. Try to stay calm and put this idiot out of your mind (I know that's not an easy thing to do) Please let us know how you are doing. Many hugs, cmpgirl ((((((Round1)))))) xoxo
Have they had some world summit where they have decided that they don't have to do their job anymore! I am so sorry you had to go through that. I know it's small consolation, but I can relate to exactly what you are feeling right now. I'm still angry, and now I am even more so, that it happened to you.
Thank God your PM was as appalled and shocked as you were. Maybe he can do some research and find a rheumy who gives a &^#$. Or maybe he can order more extensive tests, himself. While I wouldn't doubt you have musculoskeletal issues as well, I would think that a positive HLAB would have been an indicator that it was possible for you to have this disease or something similar.
Please know that I am with you, in spirit. I had hoped and prayed that you would finally be able to get some answers. If I were there, I'd give you a hug and hold the punching bag for you. I am beginning to feel like we need to start a revolution or something. This is just unbelievable! It sounds like your PM is on your side and has your best interest at heart.
Try to hang in there, my friend. I will continue to pray for you to find some peace of mind and the answers you so clearly deserve. I'll be here for you whenever you need to vent. You know you have my full support and affection. Try to stay calm and put this idiot out of your mind (I know that's not an easy thing to do) Please let us know how you are doing. Many hugs, cmpgirl ((((((Round1)))))) xoxo
Round1
04-11-2008, 12:15 PM
Thanks cmpgril, forgot to add he didnt even check my range of motion. Even my GP did that which is 20% motion leaning forward, and I cant move my back, backwards, and sliding the arms up and down the legs......... well they dont travel to far !!! But he didnt even do that simple test..................... I am fit to be tied.......... i couldnt even post last night I was mad.... and normally posting you get some satisfaction and feel that we are all going thru the same thing and there for each other, but last night I just couldnt bring myself to type, well I did start and go so mad I deleted it................
Yes the pain management or on my side but they were meant to call me today re prescriptions etc...........and so far nothing.
Yes the pain management or on my side but they were meant to call me today re prescriptions etc...........and so far nothing.
123dietdrpepper
04-11-2008, 02:33 PM
:mad: :mad:: :mad: :mad:
Okay, I am better now. This doctor is not worth our time and energy. Can you see another doctor in this field? I would definitely want a 2nd opinion if you even call this other appt a 1st opinion. He had made a diagnosis before you walked thru the door.
I am so sorry - I know you had your hopes up in finding an answer. Please know that I am here for you.
(Sorry I am out of it today, my daughter has pnemonia. :( And I am sleep deprived at the moment.)
Okay, I am better now. This doctor is not worth our time and energy. Can you see another doctor in this field? I would definitely want a 2nd opinion if you even call this other appt a 1st opinion. He had made a diagnosis before you walked thru the door.
I am so sorry - I know you had your hopes up in finding an answer. Please know that I am here for you.
(Sorry I am out of it today, my daughter has pnemonia. :( And I am sleep deprived at the moment.)
Round1
04-11-2008, 03:44 PM
Oh diet your poor daughter, and you ! dont you just hate to see them sick, you are so good to reply and advise with all that is going on for you.
I am going to wait till Monday now for the Pain Management Guy to renew my prescription and see whether he things I should get a second opinion, I need a letter of referral from him or my GP and I dont want the GP to do it as he wasnt pleased I got the HLAB-27 test done, even though he said it would be negative and then had to phone me and say positive.
So I am now on the 10 mg of oxycontin today being my first day on the 10 and on 10 mg at night. Today I did notice a decrease in the pain and was able to stay up much longer. I value my Pain Management Specialist and he really did listen to me, and was prepared to get me out of this pain..............
Diet I could ramble on and on, you know how it is yourself. I read your post on the back section and how you are dealing with just one day at a time..... and I hope your daughter improves quickley and you get the sleep you need. My nephew used to suffer a great deal from pnemonia when he was a baby right up to the age of 5, in and out of hospital, then we took him to this guy in Dublin and we havent looked back since. One think he told us was to get a small towel and roll it like a log. Get the child to lye on it, the towel going lenght ways down the spine. Breathe in and out, in and out expanding the chest and opening the airways and chest. 10 minutes everynight before going to bed. After visiting him I told my sister he was the biggest quack ever and I was never going up there again (no back trouble then so was able to help out and go places !!). But I ate my words within 4 hours the child was looking for food (never ate and was under weight due to lung problems etc). His life turned around completely and hasnt been in hospital since, touch wood. It was called endorphine release, and the towel was just an exercise not the cure now........ but Diet, what a change in the childs life........... he now is active in playing football and hurling etc, all the things he couldnt even do without being breathless, and couldnt do either as he was just in and out of hospital and constantly on steriods. So try the towel just to expand the airways... Good luck will be thinking of you.
Round1
I am going to wait till Monday now for the Pain Management Guy to renew my prescription and see whether he things I should get a second opinion, I need a letter of referral from him or my GP and I dont want the GP to do it as he wasnt pleased I got the HLAB-27 test done, even though he said it would be negative and then had to phone me and say positive.
So I am now on the 10 mg of oxycontin today being my first day on the 10 and on 10 mg at night. Today I did notice a decrease in the pain and was able to stay up much longer. I value my Pain Management Specialist and he really did listen to me, and was prepared to get me out of this pain..............
Diet I could ramble on and on, you know how it is yourself. I read your post on the back section and how you are dealing with just one day at a time..... and I hope your daughter improves quickley and you get the sleep you need. My nephew used to suffer a great deal from pnemonia when he was a baby right up to the age of 5, in and out of hospital, then we took him to this guy in Dublin and we havent looked back since. One think he told us was to get a small towel and roll it like a log. Get the child to lye on it, the towel going lenght ways down the spine. Breathe in and out, in and out expanding the chest and opening the airways and chest. 10 minutes everynight before going to bed. After visiting him I told my sister he was the biggest quack ever and I was never going up there again (no back trouble then so was able to help out and go places !!). But I ate my words within 4 hours the child was looking for food (never ate and was under weight due to lung problems etc). His life turned around completely and hasnt been in hospital since, touch wood. It was called endorphine release, and the towel was just an exercise not the cure now........ but Diet, what a change in the childs life........... he now is active in playing football and hurling etc, all the things he couldnt even do without being breathless, and couldnt do either as he was just in and out of hospital and constantly on steriods. So try the towel just to expand the airways... Good luck will be thinking of you.
Round1