Sorry I took a while to post.
Thanks for your help and advice. I found it very informative and I totally agree with you on being honest.
I don't remember exactly any severe accidents apart from falling onto my bottom from a hamock and also when I was really young, being pushed off a swing by a bully and went quite a distance before landing on my tummy but not exactly on my tummy. I may have rolled onto my side a bit. As I was so young I can't exactly remember how I fell when I landed. I wonder if any of these sort of things could cause this sort of trauma to my spine?
The other thing is I still say it could have something to do with that virus that I had when I was 17 as I've had lower back pain and neurological (leg sensations such as tingling, numbness and hot/cold feelings) symptoms ever since.
In May this year I noticed I started to get numb areas on my pubic bone and then I started to have mild frequency. In the end of August this year I then got worse with the frequency and now also have full bladder feeling constantly with it. I have had urodynamics testing and have been reported to have a bladder that doesn't fully empty. I'm not sure if this too is connected to my back problem. It seems too much of a coincidence.
I've heard that quite a few people who have similar symptoms with their legs and backs have a vitamin or mineral deficiency such as folic acid, B12, etc. I asked my doctor about this and he said I haven't got it and that he'd not test me for anything to do with my back as he thinks it'll make me anxious! Basically I can't see how a doctor can say I haven't or have got something when they haven't even tested me! I feel worse not having tests to rule things out as at least then if they don't find anything I know I've been given the best chance by exhausting all the possibilities but my GP doesn't understand me and refused to help find out what could be causing this. I've lost my faith in doctors as they train to do medicine and help people but all they do really is do it for the money! I don't know...I'm just fed up of doctors and their attitudes towards people in pain who are crying out for help. It's sad to think that there are a lot of people out there who are in the same boat.
I have now decided to see another GP in the same practice and see what he says. If he dismisses my problems too then I don't really know what to do as I can't change practices yet as I am kind of in the middle of seeing spine specialists and it'll make it difficult.
I have now noticed that I am getting a red scaly rash on my face near my nose and sort of on the cheeks but not quite. I had it once before for the first time in early (first week) of December and it went away and now it's come back yesterday and is still here today.
I also had a separate rash that was salmon/tan in colour, oval shaped blotches on my chest area, near my chest bone. I had this about two times now as well. I wasn't taking anything medication wise.
I have heard that rashes like these could be symptoms of auto-immune diseases.
The thing that is a little concerning is that when I saw my neurosurgeon about my spine, he didn't seem to take much of an interest in my bladder problem even though they can be related to spine conditions. Should I demand I see another spine specialist that knows about bladders as well? This specialist I'm seeing doesn't seem very clued up on a lot of things that, in my eyes are just common sense and should be taken note of. He kind of ignored the vitamin and mineral deficiency too! Do these doctors care? Do they know what they are talking about? I just don't know and will probably end up treating myself as they just can't be bothered. By the way, just in case you might be wondering, I'm in the UK.
In my eyes doctors and GPs are a complete waste of my time. They just sit there and do nothing about their patients' problems and this is the state of health today. I'm hoping it'll change one day and for the better as patients can't carry on being treated by doctors and GPs in this terrible and tragic way.
The GPs and doctors I've been to are the opposite on handing out and telling you to take pills every day. They have basically tried to drug me up rather than trying their best to find out the cause of why I've got the symptoms I've got. I'm not one to accept their 'live with it. You've got nothing wrong. It's in your head' quotes as I don't agree with it.
I have had doctors/GPs tell me it's in my head which, yes, it's possible but no, it's not in my head as when I sleep I still have the symptoms. They said this about my bladder frequency. I couldn't believe a doctor/GP would say such an awful thing to a patient and it opened my eyes to how some (probably most) doctors/GPs treat their patients like they're mental. Basically I hate doctors and GPs and think they just do it for the money, otherwise they'd treat their patients a little better. I've never felt so discriminated against in my life to be honest.
I totally agree on your "Live a day in my life buddy" saying, as I have always thought that doctors and GPs and specialists will never know what it's like and how awful it is to have to suffer and be told to "Live with it." if they have been so fortunate as to have to not suffer like their patients continually do. In fact I nearly said this to the two that said it's in my head as I'm just fed up and want them to actually think about what it's like for the patient as I don't think they do enough of this.
I've had physiotherapy and pain medication but that's all I got as regards treatment. They said that steroid injection won't work even though they've never tried them on me! They have never ever mentioned about a discogram! I've heard that a discogram is a good test for finding out if my degenerated discs are actually the cause of the pain. Yet, the two spine specialists (one an orthopaedic spine surgeon and the other a neurosurgeon specialising in spines) never even bothered mentioning this test or even mentioning that the degenerated discs/Shmorls node were not normal for a young person. Even though they are spine specialists I don't really believe them when they said that my degenerated discs wouldn't get any worse. I think differently...
As for the effectiveness of physiotherapy I didn't find this to be very effective in helping me. It actually made it worse. I've found that resting and not doing anything activity wise that I know will set it off to be the best treatment so far. I've shaped the things I do to revolve around it and that's the only way I can cope as of currently. Nothing the doctors or spine specialists have done for me (Physiotherapy only, nothing else) has been as effective as what I do myself. In fact they are just hurting me even more. It's not worth it. I'd rather do what I feel is right as I know my body, doctors never will as they haven't got the problem so don't know how to treat it.
I am now thinking of trying acupuncture as this is the only other conservative treatment apart from prolotherapy and maybe steroid/other injections that I feel could be of help to me now.
Surgery is certainly a last resort, but if all else fails I won't really hesitate then. I totally agree with you on it being last resort as I might be one of the few lucky ones that finds conservative treatment helpful.
I have heard quite a few positive stories on surgery though and also bad stories on surgery so it's probably a 50/50 chance or thereabouts in whether it is successful or not. Not sure.
I think a lot of success depends on the actual surgeon and the condition that is being treated. If the surgeon is renowned to be clinically competent and known for successful outcomes in his/her field then that alone could make the success rate for the patient go up.
Sorry for this long post of mine. I just thought I'd share a few more of my ideas as to what my back problem could be caused by and my opinions on doctors.
I like honest people like you as I feel that I can relate because I too am a very honest person and I like to know the real things that are true sort of thing. I don't hold back if I have something to say as it helps others too.
Thanks for your help and advice. I appreciate it a lot in these confusing, uncertain times.
i was trying to 'just" quote one paragraph where you mentioned the knowledge of any doc really IS the key to getting the best care for 'your' problem,and unfortunetly the whole post showed up,go figure. but having what you have going on at such an early age IS abnormal,and not the usual that docs see. so i don't have a freaking clue as to where your doc came up with that one,honesly,that was an ignorant remark on his part,or just plain stupid.
i think you are definitely right in seeking out another primary who just actually gives a rats butt about his or her patients. the one you have now sounds plain lazy to me. for one thing,your primarydoc is supposed to actually listen to their patients then co ordinate the patients care accordingly,this one obviously is not doing that for you and you DO need to be seeing either a really knowledgable neurosurgeon or ortho just to find out what all this actually means to you.
DDD at your age is just not the norm by any means. do you actually know what a shmorls node is? it is basically a herniated endplate withthat herniations going up or down into the disc and not outwards like a normal herniation,these can casue pain and symptoms despite the waythey are within the vertebrae.these can just be there as in a congenital defect or casued by 'something" that could have happened long ago or just over time for no apparent reason.
you just really need,number one,a good caring primary to help you get to the right places,and then a good knowledgable specialist who just has enough experience and knowledge of your types of issues to help you in the best way. i had to seek out three seperate opinions on my problem before i finally found the one and only who simply had the most overall years of experience in dealing with what my main issue was,a cavernous hemangioma that grew inside of my spinal cord(my particular "birthmark'). he was the only one who actually told me this sucker had also bled into my cord,twice. nice thing to withhold from a patient,by two other NSs who i assumed were knowledgable and could or would be able to tell me what this actually ment for me. nope. not enough overall knowledge and experience with those two.
just getting to the right people here will really help alot in getting your needs met. it may take some time or phone calls,but it is worth it just to have that doc who you know cares about you,trust me on that one. i would ask your friends about who they see as their primary and how satisfied they are with their overall care with that doc. getting a word of mouth referral from someone who you trust and know really is the best way to find the best docs. once you obtain a name,check your ins co to see if it covers that particular doc. this is how i have found a great hand specialist i needed years ago after an orhto who was stupid,screwed up blown ligaments in a finger. really messed me up til i got to the most wonderful knowledgable hand specialist. i would not have known about him had a friend of mine not used him for two surgeries. really wonderful knowledgable guy there.
you just do deserve to have a primary who simply does his job for you. there are many different ways to find that doc,you just have to start really looking and listensing to others. just tell any new primary you see that you NEED the help of a good doc who actually cares as the others you have seen don't seem to know how to do that one thing for you. i do wish you lots of luck with this. just keep going til you find that doc.they ARE out there,trust me. not all are like the idiot you currently have. please keep us posted. it may not hurt either to simply bring someone with you to appts. sometimes just having someone else there helps tons,both for you and as far as the doc just taking you more seriously too. marcia