Previous Thread
Next Thread
Print Thread
Page 2 of 6 1 2 3 4 5 6
Re: X-ray results
#70758 07/23/07 03:04 PM
Joined: Jul 2004
Posts: 1,292
C
Registered Visitor
Offline
Registered Visitor
C
Joined: Jul 2004
Posts: 1,292
Leme,
I am so glad for you!! Well...you know what I mean. It is sooo frustrating when they can't find anything or don't believe you.

I am wondering why these docs are still so dependent on xrays when it seems to me that MRIs and bone scans are the way to go. Why wait around until the xrays find something...when by then, the damage is obviously done??

Grrrrr!

Char

Re: X-ray results
#70759 07/23/07 10:18 PM
Joined: Aug 2006
Posts: 368
D
Member
Offline
Member
D
Joined: Aug 2006
Posts: 368
Congratulations, Leme. Sort of...

It's a good lesson for all of us that we really have to be persistant about our medical care. Find the RIGHT doctor, be clear about symptoms, insist on the right tests, and make sure you're being listened to.

Your first visit with the new rheumy sounds awful and frustrating. BUT - I think it's a sign of a good doctor when they think the diagnosis is A, but they still test for B, C, and D just to be careful... And that's what your new doc did, even if she started the low-tech way with xrays...

I really hope you get good treatment from this rheumy and that you're able to find a really effective treatment plan and feel good and move on to the next chapter of your life!

Re: X-ray results
#70760 07/24/07 07:41 PM
Joined: Mar 2006
Posts: 784
L
Lemeow Offline OP
Registered Visitor
OP Offline
Registered Visitor
L
Joined: Mar 2006
Posts: 784
Hi all,

I got my MRI done yesterday. I didnt know it was to be with contrast untill I was filling out the paperwork. Anyway, it wasnt bad at all. My mom is scared of them and cant get them done......

I go the 10th of August for the results..... Since I know have some proof that my pain isnt imaginary, I am not sure what to do with it......FINALLY there is something showing......That search thats been long and hard is over, now what??? I am having a hard time dealing with the "Advanced for my age" thing......The future scares the crap outta me right now!!!

I need some insight in the future and how to deal with what I have learned.....Im sure the "MEANEST" flare ever that I am in dosnt help me feel real bright and hopeful. But I really dont know what to do next or how to feel about it.

Thanks for all the replies! I am still on the road to getting the "actual dx" but I really feel its shortening.

Now what??
Leme


I am woman. I am invincible. I am tired.
Re: X-ray results
#70761 07/26/07 11:04 AM
Joined: Apr 2003
Posts: 187
K
Registered Visitor
Offline
Registered Visitor
K
Joined: Apr 2003
Posts: 187
Hi Lemeow,
Glad to hear that you are being taken seriously. i got a diagnisis in 2004 and now the Rheumy has said that he thinks I just have SAcro iliitis and fibro. I also has mri s after x rays showing nothing etc etc The mri showed chronic bilateral sacro iliiits, near total effacement of the right si joint, joint fluid, slerosis and concern for fibrous ankylosis. In spite of this, my rheumy still thinks my main problem is prychological, social or occupational in nature(direct quote) with what he wrote to disability. i am on enbrel and doing really well on it but the fact that I am having flares in my neck and right knee is why he thinks my pain is "perceived pain" typical, according to him, of people with fibro! He didnt tell me this!
Kathy

Re: X-ray results
#70762 07/28/07 06:20 PM
Joined: Mar 2006
Posts: 784
L
Lemeow Offline OP
Registered Visitor
OP Offline
Registered Visitor
L
Joined: Mar 2006
Posts: 784
Does lost space in the vertibrae mean fusion soon? I know I can look this up myself, but I would like to hear tru experience as well as bump the thread for additional info.

HUGS,
Leme :p


I am woman. I am invincible. I am tired.
Re: X-ray results
#70763 07/28/07 06:45 PM
Joined: Feb 2007
Posts: 360
J
Registered Visitor
Offline
Registered Visitor
J
Joined: Feb 2007
Posts: 360
I also was told in my very early 30s that my spinal degeneration was very advanced for my age, but it still took another 15 years for someone to name it & do anything constructive about it.

Kathy, does your doc think that just because you are Enbrel that all of your pain should have gone away & you'd never have another flare? I'm just curious b/c I was on Enbrel for a year (off now for 3 weeks & boy do I know it) but I still had some problems on it, specifically I've had some real issues with recurring sciatica & an increase in some peripheral joint problems. But I certainly was better ON it than I am OFF of it.

I went into this treatment looking for a complete 100% cure & it was my rheumy who told me that wasn't going to happen. More good days than bad days & slowing progression was what he told me I needed to look for, not complete cure, because flares were still going to happen.

Leme - I don't know what the lost vertebrae space means, I have it in several areas as well, but I have no fusion to date, just alot of degeneration. I'm 46 & have had joint problems for 16+ years so the fact that I've avoided fusion up to this point is a good thing.


Janet
Re: X-ray results
#70764 07/29/07 09:29 PM
Joined: Sep 2005
Posts: 506
W
Member
Offline
Member
W
Joined: Sep 2005
Posts: 506
Leme, In 2 years, I went from normal diac spacing to decreased space between L5 & S1. They are now calling L5 "sacralized" because it is moving closer and closer to the Sacrum. We expect that this will likely be the first joint to fuse. I'm doing everything I can to avoid that, but as many can attest, that's not always possible.

Kathy, I used Enbrel for 14 months and although I did have some rleief, it wasn't nearly what I expected. After being off meds for a full year, thanks to a new idiot of a Rheumy, I found another Doc who put me on Humir anad it made a world of difference. I am still not pain free, but I can move better than I have in years. My only goals at this point are to try and avoid fusion and to do as much as I can to reduce my pain levels so that I can finction. If your continued pain has not led your Doc to consider what other treatment options you may have and to determine that your pain is psychocomatic, then it's a really good thing that your GP is helping you to find another. I hope that happens soon.


Keah
Re: X-ray results
#70765 08/08/07 04:35 PM
Joined: Mar 2006
Posts: 784
L
Lemeow Offline OP
Registered Visitor
OP Offline
Registered Visitor
L
Joined: Mar 2006
Posts: 784
Ok Friday I get the results of my SI joints MRI....Anything I should look for, ask about, or anything?? Let me know by tomorrow for I drive down in the afternoon.

Thanx for all the replies! Love ya all Muchly


I am woman. I am invincible. I am tired.
Re: X-ray results
#70766 08/08/07 04:58 PM
Joined: Sep 2005
Posts: 506
W
Member
Offline
Member
W
Joined: Sep 2005
Posts: 506
Leme, Regardless of what shows in the SI joints, I'd be really interested in talking about treatment optins to slow the progression. I'm sure by now you know all about the meds available and may even have a good idea of what you'd like to try. Work out all of this with your Doc. Ask about what other adjunctive therapy options like PT might be able to do for you and also what meds, like pain meds, muscle relaxants, etc. could help give you a better quailty of life.

Take out a pad and pen now and begin making a list of all the things you want to ask and talk about. Although I've told people to do this a million times, I still sometimes don't and then I forget to ask something important. Too often we start off on the right track and then answer to our original question brings us to other quesitons not on our original list. Without actually having a list in hand, we don't always get back to where we wanted to be. Even now, years after being Dx, I still forget things if I don't write it down.

I hope you get all the answers you need and can finally begin to move down the right treatment path for you. Best Wishes.


Keah
Re: X-ray results
#70767 08/08/07 07:25 PM
Joined: Mar 2006
Posts: 784
L
Lemeow Offline OP
Registered Visitor
OP Offline
Registered Visitor
L
Joined: Mar 2006
Posts: 784
Wormy,

Oh I make lists! Hehehe Ive always been a list maker anyway.

I am on alot of stuff now. Celebrex, nuerontin, amatiptylin, lexapro, ultram, and something for the rhaynauds.

I am going to ask about the biologicals this visit. Whatcha think? I really am interested in slowing this down!!

Also want a low dose staroid to see if it would keep the Iritis at bay....I keep hearing Im to young to start all this. Its a long road blah blah and you dont want all the side effects it brings and so on.....I figure if I can take Celebrex which has high risk of heartattack then why cant I try a staroid?

Im not sure how to ask for something stronger than the ultram. Just for flairs!!! not a daily thing...like a script every 3 months for Hydrocodones or something.

Hugs,
Leme


I am woman. I am invincible. I am tired.
Page 2 of 6 1 2 3 4 5 6

Moderated by  ElinAslanyan, RyanMiyamoto 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4