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Old 09-20-2007, 10:17 AM   #1
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Living without a diagnosis

Just curious as to how many of you out there are living and being treated without a diagnosis. The first year I saw my pm he was all excited to have this new challenge and told me he would ask every doctor he knew and every doctor he met at every seminar or meeting he attended about my case. But, now it's four years (almost five) and he doesn't care anymore. He just wants me stable. Which I am.

My biggest fear is that something will happen with my primary or my pm(or both) and I'll be back to square one without a diagnosis. My primary's partner just retired and my pm is no spring chicken. If I'm to be one these meds for life my pain will surely outlive their careers!

Anyway....just wondered how many out there are in the same boat as me.
~Mush

This is another reason why I won't go to the ER....without a diagnosis and with my weird pain I would difinitely be labeled a drug seeker.
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

 
Old 09-20-2007, 10:43 AM   #2
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Re: Living without a diagnosis

Mush,

I know what you are going through. I went for many, many years with no diagnosis for my endometriosis. I was actually HAPPY when they diagnosed me! Crazy huh? But since I had the abdominal surgery that started my chronic pain saga, I have yet to find a doctor that knows why I have so much pain. There are MANY theories, but not a diagnosis. They also state that I have fibromyalgia, but other docs say it's RSD. So I have no idea what I really have, or what is wrong with my stomach. I saw a gastro today, and he said that my odendum (sp??) the muscles above your bowels, was "all messed up." The pain doc says it's nerve damage, and I think it's muscle issues. So who knows???

I am sorry you are living "undiagnosed." I find that my pain doctor doesn't seem interested in what is actually causing my pain, so at least that is a blessing. But I agree with you about the ER. I have been one time in the two+ years I have been in pain management, and I was always viewed negatively due to the meds I am on. I only go if I absolutely have to.

Hang in there, my friend. One day there will be a better understanding of what ails us. In the meantime, many doctors are now treating "chronic pain" as a disease all it's own. So there's your diagnosis!

Your Friend,

Amanda

Last edited by butrfligirl28; 09-20-2007 at 10:44 AM.

 
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Old 09-20-2007, 04:06 PM   #3
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Re: Living without a diagnosis

I know how you feel also. I have been through so many injections and surgeries on my feet. I now have chronic pain (which truly is a disease and diganosis in and of itself). However, I still think there is something physically wrong at least on my right foot. I have been told that I could have RSD, permanent nerve damage, neuropathy. But the one thing that remains is : PAIN. I have had two doctor's refuse to do anything else with my feet surgery wise because they said it could definitely result in RSD or make the pain even worse. I don't want to imagine that. So I guess that I am left with managing the pain as best as possible and try to deal with the side effects of the medications. They can both be very troublesome. The one thing to remember is you are not alone and there are many of us chronic pain people out there. Have hope.

Brian

 
Old 09-20-2007, 04:32 PM   #4
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Re: Living without a diagnosis

Thanks Amanda and Brian....I guess you both said it...I have chronic pain!

Brian, My husband has had three surgeries on his right foot due to breaking his calcaneus. The last one was just to relieve pain...and it made it worse! Maybe surgery isn't the answer but don't let up on the doctors. Are they treating you for rsd? From what I hear that is pretty awful...I'm thinking that might be what my hubby has. No fun at all! Take care and thanks, Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

Last edited by trowftd3; 09-20-2007 at 04:32 PM.

 
Old 09-20-2007, 05:53 PM   #5
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Living without a diagnosis

Can someone please tell me what RSD is?

 
Old 09-20-2007, 05:57 PM   #6
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Re: Living without a diagnosis

Reflex Sympathetic Dystrophy (RSD) syndrome usually develops in an injured limb or following surgery. It can affect skin, muscles, joints, and bones and is extremely painful.

Last edited by ms_west; 09-20-2007 at 05:57 PM.

 
Old 09-20-2007, 06:11 PM   #7
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butrfligirl28 HB Userbutrfligirl28 HB User
Re: Living without a diagnosis

Great Job Pepper!

 
Old 09-20-2007, 06:29 PM   #8
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stepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB Userstepbystep89 HB User
Re: Living without a diagnosis

Thank you! I've been seeing a pm dr for about a year now. There is still alot I don't know. Also, I haven't been posting very long on this message board. Still learning the etiquette. I appreciate all the help I have been getting.

Living without a diagnosis is tough. A definitive diagnosis or even a name we can call our problem makes it a little bit easier to accept. Like others have said here, chronic pain is a diagnosis in and of itself.
Good luck!
Step

 
Old 09-23-2007, 06:12 AM   #9
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Re: Living without a diagnosis

I am right along with you there has been no diagonis made, although the docs. see all the inflammation,& lose of range of motion,along with muscle spasms. Just getting a pin point on what area it is coming from has been hard. Ended up in urgent care yesturday, so much pain & swelling I just could not breath. The doc. was really understanding due to the fact that my husband blew up. He said he does not understand why with this kind of inflammation & pain no one has put me into pain management. To me not having a diganosis is the hardest part. Have an appointment tomm. with the rehab. doc. I am taking someone along & going to put alittle pressure on him. My vitals alone show what the pain is doing to me, so I am done being patient, the office yesturday was surpried at how long this has been going on. I am in debt with medical bills & tired of these doctors not allowing me time to ask questions & making me wait forever to get even a return visit, but the docs. bill is sure up there. Well no more for me, I want the time & attention I am paying for, & I want a better effort made to make a diagnosis, heck the docs. can't even seem to agree on where the problem is. I told the doc. yesturday I did not even care about giving me a pain med. just get the inflammation down. I know what you mean, you don't want to look like a drug seeker. sad. Well it is our lives & I have been told that a doc. can tell when your really in pain, so go figure. Good Luck to you. Sammy

 
Old 09-23-2007, 05:11 PM   #10
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Re: Living without a diagnosis

Go Sammy. Go Sammy!
Good for you....don't give up. I hope you get the help you need soon.
I know what you mean about the doctor bills. My last procedure was a intercostal block that did nothing but cost $2700! I'm lucky that I have insurance but even then after a few visits it adds up.Take care, Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

Last edited by trowftd3; 09-23-2007 at 05:12 PM.

 
Old 09-23-2007, 09:27 PM   #11
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Re: Living without a diagnosis

Mush~
Ill respond tomorrow if I can, but Im in the same boat...Also have a doc who is 65 or older, and NO ONE in my one horse town has a clue. I could travel for another doc, but this man is a saint and helping me, so I cant complain. However, IF anything EVER happened Id be screwed.
Ill try to get back tomorrow when i get home...this is a very good topic.
hugs,
xoxoxoxoxx,
IZZY'S tired MOM Ha~

 
Old 09-24-2007, 09:56 AM   #12
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acaptainn HB User
Re: Living without a diagnosis

Altho I Do Have Degen Disc Disease Im Told No Surgery Will Help And
They Dont Think I Should Be In As Much Pain As I Am (from The Disc Disease) Ive Been Dealing W/ This For 8yrs And Its Verryy Frustrating.
So I Guess Im A Chronic Pain Diagnosis, Tho Ive Nvr Been Told It,
Plz Be As Pain Free As U Can Be !
B.b.

 
Old 09-24-2007, 04:38 PM   #13
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Re: Living without a diagnosis

ok guys went to rehab. doc today & ordered another MRI looking for torn tendons &/or muscles. After this test he is not sure what to do, of course by the time he was done examining me I was in tears so he gladly refilled the pain meds. This is the second time this doc has asked me if I feel really anxious about anything or is anything causing me to feel anxiety? Yet he sees my pain, inflammation, & can see the change in my range of motion, any clue why this guy keeps asking me about anxiety. That really bugs me. I told him I am fed up & Since I am the one in all this pain I know there has to darn well be something wrong, it sure the heck is not in my head, especially when I can't move my arm. I just want to know what is wrong, I can honestly say not having a diagnosis is the hardest thing to deal with, I just broke down & cried when he said if this MRI does not show anything he does not know what to do next. There is another test but he feels it would be to painful, I even told him I did not care I just want to know whats wrong. How can you fix something when you do not know what is broke? I wish everyone on this thread the best because the not knowing is the toughest thing to deal with.
Sammy

 
Old 09-25-2007, 03:56 PM   #14
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trowftd3 HB User
Re: Living without a diagnosis

Sammy, I agree...I am so scared that something will happen and the next doc will not believe me. None of the tests show anything.

Was the next test a discogram? That's the one my doc won't do because it's too painful and may or may not tell him what's wrong.
Back in the 80's, before much was known about tmj, I woke up one morning and couldn't open my mouth. My very nice dentist gave me demerol for a week for the pain and then suggested the UW. Well, all they did was imply that the pain was "in my head"....it was but not the way they meant it. It's a bonus now that my pain meds help with my jaw pain.

Good luck and don't give up the search for a diagnosis.~Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

 
Old 09-25-2007, 05:33 PM   #15
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Re: Living without a diagnosis

I just got the rest of my bill for the intercostal block....the $2700 was only the hospital fee. It was $786 for each injection and then a fee for the fluoroscope and the doctors fee...the grand total was $5101!!!
Never again! No more injections that don't work!
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

 
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