Tomorrow I should know what is going on ! - Pain Management Message Board

Round1 · 04-09-2008, 02:58 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........

ms_west · 04-09-2008, 03:48 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))

cmpgirl · 04-10-2008, 07:00 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, 08:17 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

cmpgirl · 04-11-2008, 08:58 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