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jewels and patsy....thats excatly the predicament im in!!

vivavegasvvivavegas Posts: 185
edited 06/11/2012 - 8:23 AM in Chronic Pain
jewels mand patsy that is excatly the situation i am finding myself in............remember i answered a post to u patsy on rheumatolagist/neurolagist......its a nightmare, i was with my gp the other day and i was telling him about my joints,breathlessness and like all my tissue feels like its turning to stone,i brought to his attention a blood result when my inflamation reading was very high.so high that the hospital called and told me to come over to hospital and i was admitted they thought i had a clot,which turned out i didnt[but it was only 4 months after surgery of my fusion from l4 to s1]..so anyway i had a long discussion with my gp and he said i think we should stick with neurology at the minute, i said well i have this burning on my ribcage and when i take my monthly cycle things just go far far worse, i said to him well what if its the case i have like lupas or some type of dystrophy and the surgery has masked the symptoms [i had bmp used a thing that grows new bone and after doing my research it can if used too much cause tissue and blood vessels to be injured.so i said what if that stuff has damaged my nerves and thats why im getting weakness and numbness in the legs although i hanow have stenoisis because of the surgery.......I KNOW IM COMPLICATED.LOL.......im concerned that now this surgery has caused weakness and and nerve damage and maybe thats why things go back to normal during my monthly cycle.he said well it could be a hormonal thing................he said ur bloods are ok, it would come up on antibody or something and i said well should i get a blood test done around mionthly cycle time.he said no................he said i think we should stick with neurology and i said well im not happy with that,.so for the first time in my life i said to the doctor look i want u to send me to the rheumatolagist , he still said we should see what neurology think and then we can go from there, i said no im not happy could u please refer me privately to a rheumatolagist,he said ok if u are telling me that u want referred privately then i have to refer u...............i said thankyou, it means that i have to pay for it but all this is driving me mad, i wish i hadnt have had the surger.but i also have scoloisis and i am seeing the scoloisis specalist on 17 september............im wondering if i should ask him if its possible to get this bmp stuff taken out, just last night i read an article on the bmp and it caused a mans tissue to swell.jewels and patsy i know where u are both coming from ...jewels u have to keep going to get to the bottom of whats going on....as a hunam being u have that right..i know something is wrong with me im just wondering if maybe it will be hard to get a diagnosis now because of that surgery........patsy and jewels from reading ur posts i said to myself well i know im not imagining it all cause other people are going throught it too!!.......thinking of you both and i will say a prayer for u today
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Comments

  • So sorry Vivavegas you are going through this hard hard time. Keep fighting to get answers, you deserve that.

    Thankfully you have got your referral, I know you have to pay for it but the sooner you can get answers the better.

    We are here for you each step of your fight.

    Take care, and know I'm thinking of you.

    Love Danni xoxo
  • I'm on the run to get to my doc's office but I'll get back to this when I get home. I really want to read your story!
    Hugs,
    Jewels
  • I'm so sorry that it took me so long to get back to you! Between my horrible memory and just plain old "other stuff", I kept forgetting. Please forgive me? :* First I have to ask, what does "bmp" stand for? I know that when I had my surgery's done that I had bone grafts done to make new spine "cement", and for new bone growth. On the last, reconstructive surgery the surgeon had to take a much larger than usual slice of my pelvis (a HUGE slice) to make some of the repairs. Because of that, or partly because, it took me over a year just to recover from the surgery, the pain was unbelievable! I had a MRI taken a year after that surgery and it showed that I had some other problems, plus a great deal of scar tissue. Around this time I had to change my PM to the one that I have now. My surgeon had started to set me up for a new meylogram and my PM made me cancel it. He doesn't believe in surgeons. He told me that if I had it or any other test done that was ordered by someone else, that he would drop me as a patient. So now it's been years since I've had any pictures taken of my back and I haven't a clue as to what's happening back there. Plus, I also had a bad fall almost 2 years ago that has left me with my back crunching pretty badly. My PM refused to order a test for that too. But he did insist for quite awhile that I have stomach bypass surgery because I was at the most 5 pounds overweight at the time. He doesn't believe in surgeons but was insisting that I have a surgery that I DID NOT need in any way, shape, or form? It would have killed me! Seriously, it would! And I certainly wouldn't trust any surgeon that would be willing to perform that type of surgery on me when there is no cause. As to your PCP not wanting you to see a rheumy, that is just ridiculous! What's wrong with ruling things out just for safe measure? Making you pay for it is just plain wrong in my book. Let me know what happens there. As you must know, my neuro (who is my PM) diagnosed me with fibro without doing any exam. On top of that when I asked for another blood test to re-check on the lupus, he had me checked for RA again, which had come up negative already once before. Why didn't he test me for lupus again, especially since it came up positive once before? Maybe because he didn't want to be proven wrong? Does this sound familiar? I recently read that if you have lupus, you have a good chance of having fibro also. This lupus website that I found said that if you have one autoimmune disease, you can very easily have another, whatever they may be. If I do in fact have anything like this I want to know about it! It's my health after all! They can play around with theirs all they want but not with mine. And BTW, when my PM told me that I had fibro? He had diagnosed me with it the year before without telling me. Does that sound familar too? What's the deal about them not telling us when they diagnose us with something? }:) One thing that I know for sure, we know our bodies better than anyone else does and when we feel there is something wrong, there usually is. We are in tune with our bodies, we know when something is different or "off". Keep us informed as to what you find out and also, feel free to pm me anytime. If you just want to vent, that's ok, I have strong shoulders for that! Take care and I'm wishing you the very best of luck!
    With hugs, >:D<
    Jewels
  • i did reply to your other post viva about the bmp thing.
    just incase i never said before (prolly have) when they diagnosed me with lupus which was done by a rhumey (not my usual rhumey, he was out of town) it seemed like he wanted to prove my reg rhumey wrong, just, my feelings like it was a game. i did see if i remember right there are like 7 test for lupus i mean blood test. i had 2.come back positive and i do believe that R.A. and lupus can go hand in hand with each other sometimes. their are 2 types of lupus you can have one or both.. recent blood test have ruled out lupus again, and i had it ruled out before years ago, but still at one time it did come back positive, i know for a fact blood test can be wrong all the time i have seen it with others and for in myself. you are so right with the autoimmune diseases and having more than one is how it usually goes i think it is a very complicated bunch of diseases
    many times doc.s dont think it is in our best interest to know everything they think is goin on in our body or even what they think i have found by stating to doc i want to know dont keep nothing from me i wanna know what you know for sure and what you think might be going on. jewels about the mri thing. you mean your doc wont order you another one? its a shame, my hubby always says we are paying the doc.s to do work for us and when we have symptoms they need to investigate.some times my blood gets boiling cause i run into some of the same problems you both do with doc.s... well i have said enough thanx for once again listening to me ramble about 50 diff things lots of hugs to all.. patsy
  • Hi jewels[viva offers hand :H From reading your posts jewels u seem to be going through alot.suppose that is a mild way ro put it!!I think you said u had 7 surgeries, well i have only had 2.the first fusion didnt take and the 2nd one welldont get me wrong it took the severe back pain away[i too have scoloisis,ddd and stenoisis im 32 and have had back trouble since 14.you can look up my story in chronic pain which i am going to do after this........the bmp stuff is bone morphenic protein.i think thats what it is.lol] basically it grows new bone jewels, my surgeon didnt use any metalwork,and still kept in my discs.i had a recent mri and a surgeon at our local hospital[who used to operate on spines but dosent anymore but he is consultant orthapedics......anyway he sid to me i think this stuff has overgrown........and after doing my research it said that it can cause hetrotrophic growth and that in animals it increased bodily tempeture and in one article it said that it didnt know what effect it would have on the cardiovascular system.........its all a nightmare, i cant even imagine how much pain ua are in...i have heard the more they go in the more problems u get.i really dont want to let them in this time gain........jewels can i ask you something.........do u regret ever letting them touch you the first time?.i do i definetly do..but thats just me.my gp said dont let them touch u again.......i wish i didnt have all these problems but i do.........i have decided that i am not going to let it beat me,either i can lie down under it or get up and try and get on with my life...i just want to find out whats going on and so i can deal with it.well deal with it to the best of my ability, the past 2 years have been really difficult for me.my husband has seen a change in me, even with pain i was able to function and do everything,i even used to walk 6 miles most day.i refused to let it beatme i took my pain meds and got on with life[but i thought i was getting the scoloisis surgery and i thought everything was being sorted out[u see there was a mixup with my referrals and i saw ordinary joint surgeon instead of scoloisis surgeon[i had been recommended for a fusion so when i saww this surgeon and he said he was going to do a fusion i just assummed he was going to sort everything out.when i woke up i said did u put the rods in he loked at me and said no no .no need...then when i was having terrible ribcage pain, i started to ask questions about the scoloisis and he said i didnt have it and that it was a growth disorder...so me being me i went back to the hospital well my gp sent me to the hospital who said i had scoloisis and they threw up my scans and said u have 2 curves but i dont know if it can be rectified by what hes done...so i went back to him and paid 130 privately to see him and he told me ok u do have a bit of a twist and i may have stretched a muscle on u..................SO NOW HE HAS REFERRED ME TO A SCOLOISIS SURGEON..but both me and my hubby think that they wont do anything about it.............life can be so so hard.like tomorrow i have cleaners coming and i hate it,i hate it because i have had to accept that i cant do it anymore but thats the way it is........jewels u say u cant clean would u not consider getting someone to come in and do the cleaning, it would make u feel better.just 1 less thing off ur mind.im just thinking of u.like if the hopuse is tidy and clean u may feel more relaxed.......i wish i could come round there and help u jewels.id clean up for u, lite u a nice log fire,make u a nice bowl of hot soup and bread, make u lie up on a good recliner with pillow and switch on the tv to an old film.......and take away all ur pain....i really wish i could do that for you jewels!!.you sem a lovely person and i wish u well ....i really do :X :)
  • your words to jewels are beautiful i know she will feel better just by your kind thoughts,
    many times i find kind words work better than any med a doctor can give. and i believe thats what you have done for jewels.. bless you... patsy
  • aww patsy thanks...... but im so grateful for your kind words to me too!!
  • Dear Viva,
    Your very kind words made my eyes tear up! I can't see the keyboard very well now. LOL! I've actually had 3 back surgery's but the last one, the reconstructive surgery, almost killed me. And that's not a figure of speach, I wish! It sounds like your in the same boat that I'm in though! A great deal of pain. Yes, it's hard to deal with and I think the fact that my life has changed so much, it's so small now, is what really hurts me the most. I had so many things that I still wanted to do in my life, have a baby for one. But I would settle for the smaller things, the little things that my husband and I used to get so much enjoyment from. Walking along a river, camping, fishing, going to the drag races, anything! Luckily we still have a WONDERFUL intimate life, if you know what I mean. That's about the last thing that I'm willing to give up! But now that I can't travel with him like I used to, and he's gone so much, it does have an impact with our lives. Just not being able to be together! What's more important then being with the person that you love more than anything? As to your question about regret. Yes, I do regret my surgery. What I regret the most is not getting to a great, experienced surgeon before it was too late and I had to have emergency surgery. My surgeon was a hack to say the least! It was the truest form of malpractice that there can be. I didn't even get to take her to court because by the time I had all of the info that I needed to file, it was too late. If I would have had a competent surgeon who had done it corresctly, I would probably not be in the shape that I'm in, actually I know I wouldn't. And yes, it's finally time for me to hire a maid. I just can't go on like this anymore! A messy house depresses me to no end! My home was always clean until this happened. Ever after it happened! Up until I just couldn't do it anymore because the pain became too overwhelming. I've had many other things happen in my life that I haven't shared on this board, there's just so much. One of these maybe I will. It would be easier also if my server didn't keep failing! It keeps wiping out everything that I write. If you pm me I would give you my personal email address. That works better for me! Then we can really "talk". I just want you to know how much your extremely sweet words have meant to me. It does help me so much! I'm also just as concerned about you and Patsy! We've all had a hard time of it! I've got to go, I still haven't eaten, going on 6 days now! I pretty weak at this point. But pm me if you want to, and if you like, I'll give you my email address. Otherwise, we can just chat privately!
    My best wishes to you,
    Jewels :* >:D<
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