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Increasing frustration

jay911jjay911 Posts: 540
edited 06/11/2012 - 8:37 AM in Depression and Coping
So here I am, sitting on the couch while I should be having my spinal tap done. Why? The doctor is sick. They canceled my appointment this morning. Now I have to wait another couple weeks. I know, after trying to get a tap done for months, what's another couple weeks?

Well I tell ya, I go to work every day and truly feel tortured as I sit for hours, in pain and with unstoppable radiculopathy. Hours wouldn't be so bad, but the clock moves like it is broken. My 10 hour day seems like it lasts a week and this is every day, day in & day out.

What makes all this worse is my neurologist's nonchalant attitude. My quest for diagnosis has moved from spine to MS and the typical process takes a LONG time. Well every time I talk to any doctors, they all have the same "gonna be a long time to diagnose so there's no need to rush" attitude and it pisses me off. My only relief from this is my family doctor and my PM doc. They're the best and always help me feel better after visiting them.

Sorry for the rant, I've truly just had it and I know I have this same crap to look forward to for the foreseeable future.


  • Jay, you are not one to complain without good reason and you are getting the boot!! so sorry it was put off, you have good reason to rant!!! i am glad you have some support from your family doctor and pm. atleast you are not totally lost, and of course you have your spiney friends here at SH. that means me!!!! i do hope this is straightened out soon for you... i am sure the sitting is just horrible for you Jay!!! thinking of you! Jenny
  • I feel for you, truly, as I have experienced it with waiting for surgery. It was denied by ins co the day before...It makes it so hard to keep going. But hopefully it wont be long and they will get you in and get it figured out for you..My heart goes out to you. Take care, and keep your chin up. You are due for something positive to happen to you soon! Love, Robin
  • Hey buddy, I'm so sorry to hear that you're getting the runaround. It's so friggin frustrating! And through the whole thing you're in so much pain...

    You're such a trooper to work during all of this - I don't know how you do it. I really admire you for the patience you've had. I think this is the first time I've ever seen you complain...amazing.

    Hang in there buddy. At least we're having some good weather, eh? Oh, I know - maybe you should go skeet shooting and pretend the skeet is your doctor's head.

  • So sorry to hear of your frustrating wait for answers! What I'm going to say isn't going to make you feel any better--sorry. Maybe you already know this, but there is no definitive diagnosis for MS. It is considered a diagnosis of elimination, meaning, they test for and eliminate all other possible problems before making a diagnosis of MS. Even so, I hope your health system doesn't make you wait for other, more easily diagnosed problems!

    I'm feeling pretty good these days--wish I could magically take some of your pain for a few days so you could have a break. :)


    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Doesn't it make you so mad that they call us patients??!!! What exactly is implied by that? that we should be patient? Grrrr, so sorry you have to wait longer for a diagnosis. So frustrating for you. You're in my thoughts and prayers friend.

  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    Hey buddy. I'm sorry this has happened to you now. I know how bad you've had it the past few weeks and there's no wonder you're disappointed.
    I hope you can have some good days until the next appointment Jay.

    Take care,
  • Patsy--there are tests which can show the effects of MS but diagnosis of the disease is still largely a process of elimination of other disease processes, from my understanding. Read what you get by Googling "diagnose multiple sclerosis" to see what I'm talking about. May be a fine point of distinction to some people, I don't know. My point in even mentioning it here was to explain the probable reason the doctors seem to not be in a big hurry to make this kind of diagnosis. Am surmising it's because it's not an easy or quick diagnosis to make. :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Thank you all for your words of support. I better figure out how to continue to be patient, Thursday was "the straw" and I know it won't be the last time. Regardless of how crappy my quality of life is, it's worth more than that. And so is my wife's. As long as I am moving forward then I am not one to complain. Well I've had it with BS and being one that is not content d**king around I will not hesitate to raise hell if necessary, especially since my overall pain is still increasing.

    So this canceled test doesn't affect much aside from the fact that both my wife and myself now have to burn more leave time. I find it hard to believe that the University of Colorado Hospital only has one doctor capable of doing a spinal tap. At least I didn't have to change my follow up appointment with the neuro to discuss the results.

    Linda is right, unfortunately there is no MS test, it is a process of excluding a whole bunch of other stuff. It is not a quick process and that is probably why doctors seem to be in no hurry. To make matters worse, the form of MS that match my symptoms is "primary progressive" which is a difficult diagnosis for doctors to make.

    Patsy, yes I've had the brain MRI's and there's no lesions or plaque showing. I've also been tested for West Nile virus, Lymes disease, rheumatoid arthritis and Lupus. All have come back negative.

    Marianne, I don't know why they call us patients. I do, however, understand why they call it "medical practice" because it doesn't seem to be much more than practice. All I know is "patient" is not what the doctors will be calling me if I am not happy with their performance.

    Cath, you know I like to shoot clays, I don't know if I could stand out at the trap to do it anymore. However I did just build an assault rifle from scratch. I could put a picture up at 200 yards and sight it in -- that's done sitting at a bench. I've been doing a lot more gunsmithing and that helps me out a lot. I may even do some builds for my law enforcement buddies to use as duty gear.
  • :H Something's gotta give! I am SO sorry for this mess up in scheduling. I understand frustration and pain all too well and waiting for a diagnosis that won't come. It's been five months now for this foot infection that no one can figure out what it is -- and now the pain has increased.

    Keeping you in my prayers my friend.

    Take care,

  • Hi Jay,
    I'm so sorry to hear of your frustration with being cancelled. I know how upsetting it is when you are looking forward to something that could possibly help your pain level. The docs act like it's no big deal cuz they aren't physically feeling the pain. Hang in there buddy and feel free to vent your frustrations anytime.
  • Just my luck. I went for my LP yesterday, they didn't cancel! Yay! My happiness was short-lived however, as the PA came in (not the doc like I expected) and started the procedure. After digging around with the spinal needle and unable to get into my spinal canal, I became shocky and nearly passed out after breaking out in a sweat and becoming light-headed. She was digging and kept hitting bone, I am in absolute agony today.

    My follow-up appointment with the doctor was supposed to be this Friday. Now it will be the doc trying to do another tap. I can't believe I have to do this again... I hope the doctor is successful, I can't do this again.
  • I can't believe it, you poor guy! Did this PA have much experience? With your back problems, they need someone to do it that has a lot. You're in my thoughts Jay. I am hoping the next time is a lot easier for you. When I used to work at a pediatrician's and assisted with lumbar taps, sometimes the kids would fall asleep lol. If you are nervous, maybe they will give you something for anxiety prior to the 2nd one.

    Best to you,

  • When they did my shoulder MRI they used a dye injected under flouroscopy. It was awful...

    I think a resident was doing it and he kept hitting bone. I can sympathize with you fully, the PM also kept hitting bone when he was trying to place my trial SCS lead, ouch, ouch, ouch , ouch, ouch...

    That really sucks that they did not have the "real" doctor on hand to get it done while you were there!
  • Thank you all for the thoughts, they must have worked well! I went in today for my second tap in a week and the neuro doc made it happen! He did well, now just gotta rest up a bit.

    I didn't even have to pay another co-pay, they said they considered it a "re-scheduled" appointment because the first was unsuccessful.

    Now I have to wait a week for the results (fingers crossed).....
  • so glad that is over and done with Jay.. :D now you can go and shoot some pretty pictures for us!! miss you on the insomniac board. :? guess you are sleeping like a baby!!! I) take care and i am praying for the best of results! L, Jenny :)
  • I'm so glad that the second one went well but sorry to hear about the 1st experience. It gave me the shivers and nauseous feeling reading about your 1st experience cuz it reminded me of when I got my 1st injection. It was the 1st time I found out i need to be lightly sedated to have any kind of injection to my back done because I got sweaty, light headed and felt like I was going to throw up cuz I kept feeling them hit bone or cartilage and the noise it makes gives me the willies even typing about it. It is so uncomfortable and disturbing when they hit the wrong spot.
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