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The latest in my continuing saga...

jay911jjay911 Posts: 540
edited 06/11/2012 - 8:35 AM in Chronic Pain
So I know that everyone has their own continuing saga, I like hearing how folks are doing and reading their updates. So here's my update:

I know that I've mentioned in the past that my PM doc (who is actually a physiatrist) has decided that since injections and procedures aren't working, there's no point in doing them. He is in "meds management" mode while I continue to look at other things. I just had an appointment with him yesterday and he believes my meds are just about right. I do get decent relief from them. From all my testing and MRI's, etc, etc, ad nauseum, we can find no reason in my spine to be causing symptoms.

But, (isn't there always a "but"?) I've still been progressively worsening with new symptoms. Eye pain, decrease in balance, occasional headaches and whatnot. When it domes down to it, my PCP, PM doc and others all believe I have MS. (Gosh, does this mean I'm on the wrong forum??? :) ) I start with testing next week at our MS institute here in town. With our research, I believe I have the "primary progressive" type, my PCP agrees. My PM yesterday said he is confident they will give me this very same diagnosis. I'm excited that I may actually get a diagnosis because to date there has not been one for me. I wife was able to ask a lot of questions and I think that helped her a lot -- she is having a harder time than I am right now. We are so ready to be able to treat a problem rather than mask symptoms with a bunch of pain meds.

So that's it for now, things should get interesting in the next couple weeks and once I know more I'll update again.

Hope everyone has a great weekend!
Spiney hugs >:D< >:D<


  • dilaurodilauro ConnecticutPosts: 9,865
    but it will all get sorted out.
    I know that pain medications just mask the symptoms, the underlying problem is still there.
    But when your are dealing with chronic pain, you need those pain medications to help get you through the day.
    My PM doctor is also really a physiatrist.
    As conservative as she is, she still believes in having me continue with the narcotic pain meds
    She tells me even with those medications, she and other tests can still isolate the problem

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Ron, I agree with your post 100%. I'm definitely not stopping my meds, I wouldn't make it through a day -- not even close. If/when I actually get a diagnosis I can treat for the cause not the symptoms. I may find that the symptoms will decrease when treating the problem. In fact I'm fairly confident that will be the case. I also realize that I may need to stay on the pain meds indefinitely and I'm okay with that if it's necessary. Myself, my PCP and PM are all on the same page there which is also important.

    I'll be happy when I get a diagnosis, no matter what it is. I won't stop looking until I have that. Then I can move forward and that's my goal: management and the ability to plan.
  • half the battle is knowing what the problem is. i know youve been searching for a long time for a diagnosis. once achieved i know your positive attitude will carry you through >:D<
  • Michael, I believe it is in our best interest for my wife to be as informed as I am. Why? Simple, she must deal with this as well. Maybe not in the same way, but she must deal with it. She is my rock and the first person I bounce questions and ideas off of. Not only that but she is able to give the doctors a more objective opinion on my symptoms than I can. My PM doctor believes this is universal and will ask a spouse every time if he can.
    Thanks all, have a good evening!
  • Dear Jay,

    You have an outstanding outlook in addition to your coping skills. You have the determination to do what needs to be done and won't stop until you have accomplished this new goal of yours.

    Way to go, Jay.

    I am fortunate to have such a caring and doting spouse, myself. He has never missed one doctors appointment and has spent many nights sleeping in chairs at the hospital with me. Although I always take my notes with me to my doctor visits, there are questions our spouses have. When we have doctors who encourage feedback from our significant others, it truly builds a solid relationship among each of us. My doctor will gladly answer any questions Mike poses and he often will speak to Mike directly, whenever a certain diagnosis might raise eyebrows.

    We are here to support you and we wish you all the success in the world!

    Keep up that positive attitude, Jay.

  • I have nothing to say but I'm here for you my friend. I'm sorry about this, I really am. Oh buddy, hope you at least get to know what's truly happening so you can deal with it and try to move forward.

    Here's to Elephants!! (Inside joke)

    Take care, buddy. I'm here with you.
  • :H I just read an article in one of my women's magazines about a lady who put her MS into remission by adjusting her diet. I'll have to find the article and send you a PM with the highlights.

    My sincere wish for you is that the docs are able to put you on a protocol which will put the symptoms into remission so you can reclaim your life without significant pain.

    Take care and keep us posted,

  • Glad your in a good mindset knowing the possible diagnosis and getting ready to hear the actual diagnosis, stay positive and good luck to you.
    Hope you find answers and get on the right track to move forward.
    You are in my thoughts and prayers!
  • I hope that you do find the answer to your pain. I know what you are feeling. I had to go to 8 different Drs for a period of 2 years until I found one that could figure out what was causing my pain. I was beginning to think I was nuts in the head as no one could find a reason. It was awful But I kept searching for answers and going through tests until finally I went 3 hours away to a spine clinic which did a discogram that found 3 torn discs. The MRI didnt pick it up. But it made me feel mentally better and able to put a plan together of how to deal with it. Good Luck to you. I hope you also find your answer as it is very hard not knowing. Have a good weekend. Hugs, Robin
  • Thanks everyone for the kind words and support! Tammy & Hollie let me just say it will take so much more than just this to change my mindset. Really, it's very simple to me. I am not the one dealing out the cards, but I must play the hand I'm dealt. If I was dealing the cards things would be much different! LOL

    No matter my physical ability to take care of my family, I refuse to be in a position where I can't take care of them emotionally, spiritually and any other way I can.

    If MS is the diagnosis (or whatever is the diagnosis), once I have it chances are that will be my "worst day." Why? Because when I start treatment for the problem I believe that I will have at least some relief from my other symptoms. That only makes sense, in my mind. So I am looking forward to finding a diagnosis. How many people can say they're looking forward to being diagnosed with MS? :D Honestly, I'm looking forward to my next appointment next week, should be interesting at the very least! I'll keep everyone posted on how it goes and no matter the final outcome I plan on continuing to participate with all my friends on Spine Health. If it wasn't for everyone here some days would not have been bearable, I want to, no need to, pay that back!
  • Dear Jay,

    I completely understand what you are saying. There are times I have gulped at certain diagnosis', but once I know what is going on... I can then do what is necessary to treat and help myself. My fairly new diagnosis of spinal arthritis has kept my mind occupied by looking up various information. If I didn't keep my mind stimulated, it would drive me nuts.

    I wanted to mention that my husband was diagnosed with a form of MS about 10 years ago. He has been on Avonex weekly injections since that time and has kept it in control. No problems whatsoever. He is a picture of good health... as you can see from this photo. (Pant, pant, pant... lol!)

    Have a great weekend,

  • Your symptoms certainly sound like possible MS. I'm happy to hear that you are going to a place that specializes in that diagnosis as it is so hard sometimes to diagnose MS. Others who haven't gone through the struggle of finding a reason for our pain don't understand the relief in FINALLY getting a diagnosis for why, even a diagnosis such as MS. With your great outlook and the wonderful support from your wife, you'll do well no matter what is put on your plate. Rock on Jay! You better not ever ever ever leave SH, I'll keep dialing 911 until I find ya, lol!

    Best wishes to you my spiney friend,

  • YES! Here's to elephants!! lol
  • Jay - you have a great attitude- keep going! One of my friends,and employee had this as a Dx. He and I talked many times about how to handle the issues that come up. He was like yourself - always moving and going and the saddest day for me was when he turned over his letter from his NS, and he was out of work.

  • marianne, don't you worry! I'll stick around no matter what happens. The S-H forums cover chronic pain so I think I can stay! :D

    centurion, wow that's a tough decision to make, I'm not even worried about it now, I'll cross that bridge when I get there! I'm hoping my PM is right when he says that the day I get an MS diagnosis is my worst day -- treatment may relieve many symptoms and I may actually improve! Don't get me wrong, I am one to prepare for the worst and hope for the best. Reality will fall somewhere in between and at least I'll be prepared. Don't you worry, it'll take a lot more than something small like MS to change my mental status. I've seen people here on S-H and when working in EMS much worse off than I am and doing OK. I am more concerned with keeping my family strong. My wife is doing okay but others not so well.

    I hope everyone is having a good weekend!
    Spiney hugs >:D< >:D<
  • You have such a wonderful outlook on life. I have a great deal of respect for people who handle life's ups and downs with positivity! In the medical field, we do see so many people who have it worse than we do, a reminder to put our own life in perspective. Not that I discount the pain and suffering we go through here, our struggles are certainly valid.

    Again Jay, you rock!

    Best to you,

  • Marianne, that's it exactly, when you regularly see people at their worst it really does put things in perspective. I haven't been in the field for 5 years now but there are some things you just never forget.

    I think everyone here rocks! Everyone has their down days, there's always someone here having an up day. And they always are here to share that up. Now THAT rocks!
  • Jay - You mentioned others [Family] having problems with the Dx. I find that my sweetheart is great, except when the what-ifs get going and then it is bad when we don't have a crystal ball of the future.[LOL] She finds that really hard, and for me, I have to accept what-ever kind of day I have, because that is all that I have. To do anything else is not productive to me mentally.
    I take time to reasure her that I am fine. Its fine when I am doing good, but when I am in a flare-up or pain cycle- I feel like I am on a rollercoaster- just hangin on and trying not to hurt myself too much during the ride.

    Cheers to all - this sunny day -David
  • David, I agree totally. Hang on and enjoy the ride! (enjoy? ok maybe not enjoy....) But you described it exactly, the mind starts doing the "what if" scenarios and that's what causes trouble. Things will be better when I have an actual, for real, definite diagnosis.
    Hope everyone has a great day today, relatively pain free!
  • My PCP for some 20+ years has MS. I have never seen the man "down". He has fought it long and hard.
    While it is wearing him donw, he has not been beaten!

    Hope that no matter what you find, it is the right answer. I know how it feels to have pain with no diagnosis. The question of why does this hurt so much is almost worse than the pain.

    You seem to be on top of this, stay there and hold on :D
  • Well, we saw the MS doc yesterday. He says he gives me about a 3% (yay!) chance in having primary progressive MS. So that's pretty good news! In reviewing my MRI's, he found what he thinks could be an Arterio-Venous Malformation in my t-spine, which may or may not be fixable surgically. He saw the AVM in the sagital view (from the side) and also in one of the horizontal slices. He says that needs to be investigated as well as the bulging in my c-spine before proceeding with MS testing. So I guess we'll see how that goes. I call on Tuesday to set up another MRI with contrast and proceed from there. We consider this good news, however we are still pretty guarded. I've had multiple doctors including my PCP & PM doc come right out and say that they think it's MS and this doc did not rule it out so we're trying to not set ourselves for disappointment.
  • dear Jay, :H i just now came upon your post and am hoping for the best for you!! :H you never mentioned this in the sleep forum dear Jay!! i guess this would be enough to keep anyone awake! :D well, here are hugssss for you and of course you are in my prayers! >:D< >:D< Jenny
  • Hi Jenny! Thanks so much! I guess I didn't mention it in the sleep forum :O Thanks to the diazepam I generally don't have much trouble sleeping ;) It's not great restful sleep, but I generally sleep through the night every night. Except when I roll over, then right back out. And until that stupid alarm clock goes off! :)
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