finally got a new dr today

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missie1227
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Date Joined Nov 2005
Total Posts : 751
   Posted 2/3/2006 12:53 PM (GMT -7)   
welp, it is a long story but to make a long story short, i got a new doc today and got rid finally of the one who wanted to give me only shots......it happened by accident actually. i had a med appt to go to and the woman who made the appt one month ago quit her job and what she did was screw the docs office by making false appts for patients to go to and never enter it into the comupter. so i had an appt but when i got there, it was not in the computer, and was told no you dont have an appt, and she did it again to another patient....nice....
anyways i told the office peeps i need a refill on my meds and i wasnt budging until i see a doc.
they got me into to see another new orthopod.
i told her about the pain mgmt doc and how she will not up my  meds. she gave me a new script for stronger norco.
she looked at my spine and said to me ya know you have a bad lumbar  lateral scoliosis, i said i know it  wasnt there last year.
i told her i have PA and waiting to learn for sure about AS
 
i find out for sure i guess on feb 7th
she said you shouldnt not have been pestered by the pain mgmt doc for all taht time for shots as your rhuemy may want to do something in the way of steriods for you and you would have been over loaded w/ steriods.
 
so, i listened to my gut instinct and it was right after all.
at  least i got someone who is new and while she sadi she doesnt know all taht much about AS/PA she will look into it for me also.
i told her i am now on a wheat /gluten free diet.
forget about doing the nsd, this  is all i can do so far to see if i get any better results with the wheat free/gluten free first.
 


9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA/AS in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/3/2006 1:11 PM (GMT -7)   
Hi missie. I see you posting on the lupus froum sometimes and I wanted to say that I'm glad you got a new doc who is listening and working with you. The PA that I see between rheumy visits is amazing even though lupus is not her specialty. She reads a lot about it and really tries to help me and is not afraid to run labs and give me meds if needed. Docs can always learn more about our illnesses, but you can't seem to teach them bedside manner or that the doctor/patient relationship can be a partnership. I hope you have continued success with this doc. I'd like to know more about your diet and the benefits you can get from that. Take care
Dx:  Suspected Lupus 2004, CFS 1991, Secondary Raynaud's 2006
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 100mg


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 2/3/2006 2:02 PM (GMT -7)   
thank you so much hippi- for the response. i am very overwhelmed lately and extremely confused about knowing what exactly  do i have wrong with me. since i am still in the discovery stage here, i am counting on xrays/ doctors to know what they are doing, and interperting the results of my xrays, which they are not always correct in the past.
 
i had one xray place tell me that i had a 1  cm tumor in the upper right pareital region of my brain, and scared the crap outa me so when i took my xrays into my neurologist to look at he said, no it is not in your brain, it is in the mennenges ( outside the brain). that same xray radiologist wrote that i had a 3 mm hindbrain herination, when the nuerologist said no you dont, he measured incorrectly. like i said, here in fl, the docs, radiologists, etc dont seem to know what they are doing. i dont know how to interpert their findings.
 
so who knows for sure?
on the latest xray, it clearly shows i have a lateral lumbar scoliosis that i did not have last  year. that same radiologist said it was owed to muscle spasms. i tihnk they ought to pull this guys liscence for writing incorrect information down. i tihnk i will make a complaint about this guy to his superiors. maybe he need  more training.
 
anyways, i have been fraught with fear, no answers and feeling in unrelenting pain all the time. what i wanna know is why is my spine curving in the lumbar now
when i didnt have this last year? sad


9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA/AS in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/8/2006 6:29 PM (GMT -7)   

missie:

just so you know, i am currently swimming through my med/patho books in the chapter of lumbar postures and etiologies and causes of lumbar shifting and curving.

i might come up with something!  hang tight!

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/9/2006 10:35 AM (GMT -7)   
morning Missie!
i too hate the waiting game.  for 6 years i couldn't understand why no doctor could even begin to help me.  but unfortunatley, it takes a lot of time sometimes.  once things got going...it was full steam ahead. 
 
okay, i was deeply into lumbar scoliosis this morning.  i'll write my thoughts & you can tell me if any of them make sense or if it's just stuff that you've been told already.
 
away we go:
  • if and should you have Ankylosing Spondylitis and the radiologist or whoever mentioned, "the spasms causing it" could have a point!  if an AS spasms is severe enough or causing a torsion (twisting) that could maybe shift the vertebre and cause the lumbar curvature.
  • a coxitic scoliosis of the lumbar spine is caused from tilting of the pelvic in hip disease.  so if you've had fractures of the hip or any surgeries...that can be a causing factor.
  • inflammmatory scoliosis can occur quickly if you have disease of the vertebre or degeneration.
  • myopathic (this is the one i like!)...ok, when your muscles in your back weaken due to limited mobility & trauma or whatever, the vertebral column loses it's support system...and then ya have a shift in the lumbar from weakened muscles!
  • osteopathic (when you get osteoporosis) but they've most likely covered this one.
  • protective scoliosis (i find most interesting) is an acute side shifting of the lumbar.  it moves away from the side of the body that "has a problem".  it's the bodies natural response to get away from a problem.  the body is attempting to move a nerve root away froma bulging disc or herniation! how about that?!
  • ocular scoliosis is when you've become forced to hold your meck and head differently say from Cspine surgeries & fusions.

do you have the actual radiology report with you?

i hope this maybe brought some new ideas or innovated thinking of matters which they might have overlooked.

if there is ANYTHING i can do further please let me know.

my thoughts are with you as i know it's terrible to hear so many different things from doctors while no one is helping at all, and all that happens is you grow more and more exhausted from the run around.

{{{{{{{{{{{{{{ big hugs }}}}}}}}}}}}}}}}


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 2/9/2006 10:01 PM (GMT -7)   
oh erin i dont know how to thank you. :-)
 
 for all that you have done to help me. cool
 
 
 i do have some of everything it seems, i have weakened muscles from not walking too much as it hurts, and i did have my 'illiac crest' removed from my right hip in rear to use as a donor for the graft site in my neck. it still hurts where she cut me in my right cheek, and it is stil painful. i have so many herniations in my spine also. i have HNP at L5 S1,, l-2, l-3 T7-8, T 9-10, T10-11...it all hurts so much.
 
i went to see me rhuemy and he told me that i was neg for HLAB27 and prolly just have 'fibro' or PA
 he wants to put me on humiara, at 1500 for two shots a month...wowsers
 
i am still debating on to do it. i had my TB test  and have to show them that i dont have TB tomorrow.
 
i guess i wil have to try it. they said my sacroilatic is okay and not fused and my hips are okay so far also.
 
it is just my lower spine and T and middle neck section.
 i dont know how to say thanks enough to you girlfriend!!! yeah yeah yeah
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/9/2006 11:19 PM (GMT -7)   
dear missie,
no thank you needed.  it's what i do! it was my pleasure.
this might be encouraging, but when i first heard my rheummy say it, it freaked me out.  sometimes, you get a proper diagnoses if you begin a medication and you respond to it!...that means you've got what they're trying to treat!
i went to NYU Hospital for Sppecial Surgeries and the doc there says that sometimes the only way a doc can make a definitive diagnosis of RA is if the patient shows improvement while on the TNF meds! funny huh?
 
so your testing negative doesn't mean you do not have PA or such.  there is so much trial and error it's unbelievable.
 
if you were my patient...i would label you as a multisystem MESS! LOL. and begin to treat EVRYTHING from head to toe.
 
there are quite a few things you can do to help the alignment of the lumbar.  are you wearing any braces or support?  i can look into those as well for you.
 
this stinks that it took me 6 years to get an assocites degree! i say to my nursing advisors, "if not for this da** RA and diseases I could have been through med school by now!".
 
if you have a copy of the radiography reports, post it for me to read. i'de liek to see it.  my heart goes out to you.
doctors really need to start treating persons as a "whole".  and to take everything into consideration.  i feel that many docs don't want to "think" ya know?  and if a person comes in complicated and multisystem...they get lazy because we're not text book cases.
oh, what's HNP? i'm not remembering off the top of my head.
 
i highly doubt that it's "just fibro"..although FM is very bad in some cases, i think you need better treatment.
 
i wish you a peaceful nite missie.
erin 
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 2/10/2006 7:15 AM (GMT -7)   
hi erin- HNP is term they use for  herniated nucleus propulus ( sp) of the discs in between the hard vertrebre in your spine ( soft discs) HNP means it is not just a little tear that is leaking out but the entire disc has been ruptured and sometimes is retractable but not in my case. in my case the crash was so bad that it is intractable ( will not receed back into the disc) and is spilling out and maybe even breaking off in tiny pieces. some of it is pressing upon nerves and in my back T section it is impinging upon the thecal sac. with some cord compression in areas.
 
 when i had the front of my neck done fused at c 5-6-7 i had to have a corpectomy.
a corpectomy is done when the front vertrbre hard part has shattered some and in free form peices floating around from the disc hard ( bone)and soft disc.
they ended up stripping away the front  of my neck boney structure and all for two-three levels and created a new boney structure for  my neck with allograft-cadaver bone instead of my own bone. they made a plug to insert in between the discs spaces and then plated it with metal and screws to hold it in place.
when i swallow very  hard i can feel it in the back of my throat ( the plate)
should those plates come loose, they can crush my windpipe and i can have instint death. this is very rare and i do not even think about that happening.
 
i can get the xrays and ct scans   and put down waht the xray guy says but i gotta run out the door right now so will catch ya later girlfriend!!!!
 
hugs to you for being a great friend and help
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!

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