So upset!

General
1

Just saw my Internist, he ONLY had the results of the cervical MRI, not the most important of the 2 taken, the lumbar, which is supposed to show the worst of my problems, was not sent even though I spent 45 minutes doing paper work for the MRI establishment telling them where I needed these results to go. My Internist's nurse was calling for them when I left. Better her than me, I have had a year long run in with them about a bill that had been paid that they sent me to a bill collection agency over, even after I sent the cancelled payments from the bank to them!! I am very patient, understanding, and compassionate, but after a year of this, they had better RUN about him not having the results, I CANNOT wait 2 months to talk about the worst part of my body, because of their continuous ineptitude!!

I mean I know from the pain threshold that my neck was not good, but had no idea it was this bad, and it is NOT the worst of my problem, the SI joints are but no report for that area!!!!

The one of the neck shows degeneration of EVERY disc, some are collapsed on one side causing curvature of the spine starting at my brain stem and going into the upper back, along with stenosis. I asked the nurse to make me a copy of this report and then asked Doc to go over the findings, 2 pages of findings that is, and point out where on my body each problem was.

I explained that the Rheum told me I had stenois of the neck and the lumbar but NOT where he and the Chiropractor had found it of the tailbone on the mylegram. I told him that the Rheum refused to look at the myleogram that I had carried with me.

I told him the Rheum seemed irritated when I mentioned this, and simply told me it was NOT THERE! This is the first time he has been this way with me, he also insists I'm better, and I told this Doc today that I surely do not feel better, but did not want to PO the Rheum for all of the efforts he was making with me.

So hopefully the results can be retrieved and the Dr will talk to me over the phone about the lumbar results!

I just feel so screwed, my body is surely failing me, I was not upset when I got there, and my blood pressure was HIGH, it is usually on the low side of normal. Pain was the answer, no kidding!

I know I am usually the one to do the uplifting, but today I am falling apart, the tears just started to roll out of me on the way home!

I can hardly wait to hear what's next!!

2

SK, I'm so sorry that you had such an unfruitful appointment today, after all of the effort it takes to get there, and I'm sorry that you can't get any clear answers on some parts of your body. As if your fibro isn't bad enuff, your PsA is worse. It's one ugly illness.

Hoo boo, I'm near tears myself to hear this, SK. Your poor disks. Can anything be done to slow down their degeneration? I'm not sure if your Embrel addresses this issue or not. My gosh. Something has to be done to slow their degeneration down!

And I'm as mystified as you as to why your rheumy insists you don't have spinal stenosis where other docs claim to have found it and won't even look at the myleogram. And I can't even suggest that you trust your gut that says you aren't feeling better thus may not be doing better because we both know that sometimes PsA meds feel like they're doing nothing until you stop taking them. Thus, you might feel horrid but maybe aren't worse off? I'm as clueless as you, SK, and can hear your frustration over this confusion.

What does your internist make of your rheumy's belief that you're better and there's no stenosis in your tailbone? If you don't know yet, don't worry about answering this. I'm sure that you'll get more info as your internist gets the other, belated MRI. It will be interesting to know what he thinks of what's on there.

Please try to de-stress a little bit if you can, as you can't get the answer quite yet. You'll get it, you'll get there. I know you. I know you will. In fact, saying that silently, along with a few deep breaths, might help you to let out a bit of your disappointment. However, I can almost picture the fist up someone's nether region if your MRI isn't delivered promptly and a clear and concise explanation isn't offered to you quickly.

If you can do something to help let go of today's frustration, like some aromatic candles or a bath with Epsom salts, I highly recommend that you do so. Remember, Rome wasn't built in a day. Patience, girlfriend, patience.

Here is my best cyberhug to you { { { H U G !!! } } } because I know you're needing it badly right now. I'm here if you need me. You know how to get in touch if you want to talk.

Sadly,

Petunia

3

Thanks, Pet! I felt it all welling up inside even before the Doc got in there, when I looked over the 2 page report just on the cervical spine. No wonder my neck hurts so bad, no wonder I can barely turn my head to the one side, no wonder my arms, hands and fingers are numb!

I don't know what crawled up the Rheum's behind the other day, but it had better have crawled out when I go again in 2 months. I think I'm gonna find the exact x-ray and pull up the blinds in the room and say LOOK, or I'm outta here!! Everyone is entitled to a bad day, but I don't need to be treated that way when I am trying to know what is going on with my body, and there's a lot going on!

Tomorrow Doc will talk to me about the reports, if the SI joints are the worst part of my body, he needs to see the reports, and that MRI place had better hope to God they sent them to him, if I have to ride all the way out there, I'm telling you there will be a scene!!! They had better get their act together!

4

See, see? I knew you'd be up to your usual feistiness in regards to the rheumy and those missing MRIs. You got a double dose of craziness there and I'm sure you were in no place to deal with it once you saw the report on your spine. And I'm a bit confused; isn't the Embrel supposed to slow this stuff down? Cause it doesn't sound like it has slowed down. What's with that? And forgive me, I never realized that PsA could attack your spine as well. Yeah, no wonder you couldn't turn your head and your arms are numb!

I hope you can get some clear answers. And more medical intervention to slow this stuff down more!

Frustrated as well,

Petunia

5

http://www.spondylitis.org/about/psoriatic.aspx I have the spondylitis type of Psoriatic arthritis, that targets the spine. It is the absolute worst kind to have!! OF COURSE, that is what I have!!

Am going over this with Renie on the phone, she knows all the lingo, but she is having storms, and I lost her just now.

The Rheum swears it's working, and perhaps I would be in a world of trouble without it, I think it has helped to some degree, but even if it SLOWS down damage, doesn't mean it STOPS it! You know? He has told me that last 4 times I've been there that I've had this for a LONG TIME!!

The Rheum is so convinced this is working, he insists I now have antibiotics at home at all times. So it's really starting to compromise my immune system, so no wonder I'm tired, lots of battles going on inside me, so I don't need all of this other STRESSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!!!

6

SK, I knew there was a reason I was thinking about you at your appointment so much today! I’m so sorry !!! YOU ARE SUCH A STRONG WOMEN, and to think this appointment brought you to tears is so upsetting… Sometimes are strength is just worn out and for very good reasons !! When ever I feel so totally defeated I here my grandmother saying everything looks differently the next day… That being said, I try and focus on feeling better tomm, well with fibro ( & everything else) not so much, but emotionally … Maybe !
Your disappointment is so totally founded ! I hope they call you tomm & give you some answers. I’m guessing they should !! They better !
I know it must be so upsetting that the Dr’s don’t agree… Hopefully the remaining MRI results will clarify all that…
I’m not understanding, as I’m sure your not either, why your Rheumy don’t want to look at the myleogram ?
I’m sure he has a good reason… Which I know is why the results of the MRI was so important… Ugh !
How frustrating
If I could I would call that MRI place and give them a piece of my mind… Just give me the word, one call & I guarantee your Dr will have the results tomm !!!
Try and de-stress tonight, maybe that tizanadine will help, everything will work out

Sending a big Group cyber HUG with petunia … Ahhhh do ya fell it

Much love :slight_smile:
dee

7

Thank you, Lovett! Maybe one test result was enough for one day, especially if all of this is wrong with my neck, clear up into the center of my skull down. If my biggest problem is in the lower back, perhaps it is better I hear about it tomorrow, maybe it was best that I not hear it ALL today, and drive! I guess things happen for a reason!

Thank you and Pet and Renie for being there for me!

8

I'm losing replies like crazy tonight.

Yes, I forgot it was PsA of the spine. Dayum. I hate to think of what it could have been if this is the slowed down version!

So I guess your rheumy is absolutely right when he told you it was around for a long time. Maybe you need to set up a missile launcher next to your former doctor's office for missing this! I mean really, they missed something this glaring???

I guess it's like when people on the PsA site say their meds aren't helping at all until they stop taking them and end up in utter misery. I guess they working in a silent manner. But oh God, I'm just so sorry about all of the damage that's been done to your spine!

Hang in there, SK. You'll get some answers because I know you'll shake it out of the doctors and the MRIs if they don't get on the stick! And I'm with Dee, I'll jump in too and demand answers from your doctors if you want.

My best to you and a lot of hugs. You deserve them tonight!

Petunia

9

You know, SK, this is absolutely true. I think even more bad news (worse news?) could have put you right over the edge. I do think it's better to have time to digest the spine news before you hear even more news. And I hope you're at home, sitting down, and having a glass of whiskey. Okay, I know you can't do the last thing but it's the thought that counts. I also think you shouldn't drive until you're a bit more settled with this news.

Many hugs!

Petunia

10

Thanks Pet, you know, as I calm down and my logic returns to me, I can't help but think that perhaps it was best that I did NOT get all of this dropped on me at one time.

Perhaps the neck would not have been talked about if the SI joints are the worst of it all, and the PsA is far worse than the fibro, or the Sjogrens, or the Raynaud's.

The morphine is starting to work a little, and Hubby is ordering dinner to be delivered! Gotta love him for that!

11

Thanks dee! I was just telling Pet and Lovett, that it may have been a blessing that I only got hit with the neck results, since the lumbar is the worst. Perhaps I need to just think that some times things happen for a reason. The results of the neck were upsetting enough.

If I feel that I really need to, I'll go back for another appointment tomorrow, we'll see what he tells me on the phone. His gal is going to get the results for me, it is just best that I do NOT have to call or go there, believe me! And if she can't get them, God help them if Doc has to deal with them, he will make sure he gets them!

Thanks for being there! Renie called me and explained the lingo to me, she is getting pounded with storms, have they hit you yet? We are to get them tomorrow! UGH!!

12

I am so truly sorry this has happened to you! Doctors and their darn a$$inine screw ups! Then their holier than thou attitudes to try to cover their inept. What the hey, they even have a code to bill for the consult over the phone, so they don't care at times, they will still get paid for it!

I am sending you very dear hugs. I feel your pain from here and it doesn't help to feel that they are just screwing up as your body is letting you down. Pride yourself in being the patient and understanding one, and know that we are here to uplift you too. You do not have to cry alone. Hang in there, I understand that those tests are hard to take in at the same time. You are strong and cared for.

13

Thanks so much, I think all the venting and crying are over now! My eyes are so swollen I look like I've been stung by a swarm of bees, but a lot of built up frustration came flooding out! This was just what opened the gate, I guess!

So tomorrow I hear the rest, and I know this won't be good! No sense dreading it now!

Hope you are having a good night, thanks for the lift!

14

BTW, Renie defined this for me have a couple of those on the neck, that explains some of the pain too. I have bone spurs in the knees, ankle, ball of foot too, who knows where else! They are nasty! http://www.spine-health.com/glossary/osteophytes

15

His office opens in about 20 minutes Mike, so I'll be able to call to make sure they were able to get the reports, then I'll have to wait for Doc to look it over and talk to me, but I know that he will!

16

*hugs*, I wish there was more that I could say to be of help. You have said enough for me to be able to draw your spine for you. I really hope that the doctors can get hold of what they need to and make some progress in treating you. You need to be treated for some of what is wrong as a priority so pester them as much as you can.

As for crying... it is natural. You cannot be strong 100% of the time and letting the tears out is a good way of regulating emotional pressure. All I can say is it is a pity I was not there to give you a hug and offer you a shoulder to cry on xx

17

I just called the office, Doc is not in until 4:00 today, I'm to call at 4:30 to speak to him, she has the report on his desk! Will let you know more when I know more!

You have been a huge help, Mike, you always are! Thank you, I'm going to take my meds including the morphine and try to lay back down!

18

I hope that he is of help later. I am off and on at the moment. Need more pills... going to take a diazepam/vallium for my back if it throbs any more x

19

Sometimes you just have to lose it. You have been really strong for everyone else. Sometimes when you have built yourself up to finally get some answers and even just a tiny thing goes wrong never mind a major thing you feel the whole world come crashing down around you. As for the rheum he is maybe as frustrated as you about the results and feels he has to explain the cockup to you but doesn't know how so ergo becomes defensive. No excuse really but just playing devils advocate.

Hope you feel better

Ann

20

SK,

I'm wondering how you made out today? I see that you had to wait until 4:30 to talk to him. Did you get to speak to him? I'm guessing you're digesting what you heard?? I'm hoping it's not too bad...or less bad than the neck. Please get in touch...if you're feeling up to it.

Hugs, my dear,

Petunia