Do your doctors ever disagree?

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 10/24/2007 3:53 PM (GMT -7)   
Hi all, Ok I've been talking about my rheumy saying I have PBC. Well my PCP's nurse just called and said I need to call and make an appt in the morning for a consult because she doesn't agree with the rheumy's DX. I guess the report said I need to see a G.I.. My PCP is still going with the Lupus DX. eyes What am I supposed to do now?
 
Well I'm heading out for the evening I'll check back in later
thanks again
carol
God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/24/2007 5:10 PM (GMT -7)   
Carol, your head must be spinning, to say the least. Unfortunately what you are going through with your docs diagnosing and unduagnosing you seems pretty common. It's happening right now with my son and it is making me feel absolutely crazy.

I honestly really think that even though most of us don't have medical training, we are in tune enough with our bodies to have a "gut feeling" about what is really going on with us. I think that after we see our docs and get our labs and do some reading and research and talk to others going through similar things, we start to get a feeling for what is really going on in our bodies and what we might have. In no way am I saying that we should self diagnose ourselves and ignore what the docs have to say, I'm just saying that we are the ones who live in our bodies and we know our bodies better than anyone. I personally think the ideal relationship with doctor and patient is one of a partnership because I believe that docs can learn from their patients too. I also think the more docs you see the more conflicting diagnoses you might see.

Is it possible that you have both PBC and lupus? There can be a lot of diseases that overlap each other. If I remember right, you seem to have a good pcp, so this might be a really good time to do the consult with your pcp and have a heart to heart and ask any and all questions you have.

I told you on your other topic that just when we feel like we kind if get the hang of riding this crazy ride of autoimmune diseases, someone throws in another loop or drop off or curve. Hang in there and remember to trust yourself. It's probably a good thing your pcp wants to talk to you about all of this - it means she is taking your health and your care very seriously and wants to make sure all of your providers are on the same page.

Have a good night and let us know how the consult goes.

Love ya,
hippi
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/24/2007 7:51 PM (GMT -7)   
Hi Carol,

I agree with Hippi.

My issues are minor (no organ involvement) and I also have conflicted doctors. But for me, the treatment is still in line with lupus. So I don't care that one says SCLE and one says UCTD, Inflammatory Arthritis and one says its in my head confused (that one is getting replaced when I can find a new pcp). I'm holding my breath, hoping the new rheumy I see in Nov will be someone I can communicate with and who will take me seriously. (my first rheumy doesn't take my insurance any more).

Sometimes you just have to wait till all the docs get a chance to put their two cents in and see what you come up with. Is a GI doc the best doc for the liver??? or is their a liver specialist??

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 10/24/2007 8:25 PM (GMT -7)   
for me I would go and do what the pcp wants. I like the others...it dosen't matter what you call it, as long you are getting help. Also, what every your pcp finds out they should send a copy to your rmhy. I make sure that where ever I go....I tell that doctor to send a copy to my others doctors....that way everyone can be abroad.

My pcp has me set up for more testing in januray...and a copy will be sent to my rmhy. Plus, it can cut down on re-testing between doctors.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 10/24/2007 8:48 PM (GMT -7)   
Hi Carol, I think the rheumie can't totally say you have pbc until the hepatologist does tests. Please try to go to a hepatologist rather than a plain gi doc, no matter how erll you like them. They are coming out will all kinds of new treatments and the gi just won't be up on it like the liver guy would. Just try to stay out of it, so they don't get mad at you, is my advice. It never hurts to see a hepatologist if you have elevated enzymes. I don't know what tests your rheumatologist ran, but if he ran antimitochondrial antibodies test and soem tother tuff than he might be really probably right. I would please your pcp but not take her comments to heart. I would request that you see a hepatologist due to the increases in your liver levels ad fyou have right upper quandrent pain and lidht stools. The pcp will come around once all the testing is done. Youmay have lupus and PBC because liver disease can cause lupus, so if your rheumie is trying to give you the brush off, thenMaybe that is contributing. Well, I'm getting double vision I need to sleep. I'm sure they will get this sorted right awa if you. T
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 10/24/2007 10:04 PM (GMT -7)   

Hi Hippi, Rosie, Frank and Marji, thank you all for helping me out with this.

Hippi I am so sorry you are going thru all of this with your son. My heart just aches for you. You're right about knowing our bodies better than they do. I know my liver is enlarged. A friend that went with me reminded me that the rheumy mentioned it when i told her my kidney was really hurting. She said it was probably because my liver is pushing up against it. I guess it's possible? I just don't want to be a hypo-C. and lean on every word they say and or I'll really make myself sick.

Rosie, Marji seems to think a hepotologist would be better. Since this is all new to me I guess I'll just wait until I see the PCP and find out why she is in disagreement with the Rheumy. She's the one that sent me there. Than again she's also the one that has been trating me for lupus for almost a year.

Frank thanks for your input. I will wait to see my PCP I have a lot of faith in her and she is not afraid to send me to somone else if she thinks it's more than she can deal with. She may send me for a second opinion I really won't know until I see her. I'm gonna hole off until next week though. I already have an appt the 31 for my flu and pnemonia shot so I'll find out than what is going on. I pretty sure one more week isn't going to make alot of difference. I just want to throw my hands up though. But a possitive attitude with go a long way so tomorrow is another day and I plan on making the most of it!

thanks ya all

love

carol


God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 10/25/2007 8:16 AM (GMT -7)   
Carol,

Rollercoaster is right! You must be going out of your mind, girl. I'm glad you're going back to your PCP next week and I'm sure she'll help you get to the bottom of this. I also agree with what Hippi had to say and am glad she was so eloquent because my mind has gone into early retirement.

I hope you make it through the next several days without pulling out your hair. Enjoy this cool fall weather we're having.

I'll be thinking of you till we learn more.

Love,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/25/2007 4:57 PM (GMT -7)   

Thanks Pat! you are always around to cheer me on. How is the test going to find out what foods you are allergic to? As for the weather................LOL. I hate the cold weather. I'm totally a summer person. I'm sick of winter all ready and it's still fall LOL.

love ya gal


God Bless
Carol
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor. Osteoporosis,osteoarthritis
Prednisone 5mg, Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/26/2007 9:02 PM (GMT -7)   
Hi, Carol. I'm sorry you're having to deal with the uncertainty of your docs having different ideas on how to DX you. If these stupid diseases aren't enough to drive you crazy... Please know that I'm thinking of you and will be looking forward to your posting and telling us all this craziness is resolved for you! Just hang in there! Patience, not knowing, persistence, uncertainty, tenacious...I am sure there is some purpose behind this. We have to be learning something, right? Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/26/2007 9:08 PM (GMT -7)   

Well hi Sharen, thanks for the cheering up! I don't know about the patience, I seem to be taking more anxiety meds than usual lol. How the heck are ya? I am so lost around here lately. So many new people. It's like a Lupus explosion.

I'll be looking for the silver lining right along with ya!

love ya

carol


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/26/2007 9:55 PM (GMT -7)   
Hi, Carol. I'm with you! I think there has been a lupus explosion! I also think it probably has a lot to do with everything we have created for ourselves and put our bodies through (crap food, no exercise, Rx digestion factory's, chemicals taken in everything from cosmetics, detergents, cleaners, smoke; Don't get me started!). There are SO many new diseases and ills that I never heard of when I was growing up. I am trying to take the time tonight to catch up on reading these posts. There are so many now, I stay behind all the time! Even my lupus support group meeting had a few newbies this month! It's good to hear from you too. I do hope you get some answers soon. I'm still following your posts, keeping an eye on your situation. I am just a little slower now. Do take care and keep us up to date,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/27/2007 7:32 AM (GMT -7)   
Carol I am sorry you are going through this right now. I have no advice for you, everyone else has said it all very well. Just hang in there and don't give up ok??

Connnie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/27/2007 9:40 AM (GMT -7)   
Hi Carol,

I was just thinking about you this morning and hoping that you're having a good weekend. It's cool today but at least it's not cold. Turn up your heat and let us know how you're feeling. You're right, there are lots of new folks here and I can well remember when I was new and awkward here but how great it felt to be a part of this little family.

Take good care of yourself and let me know how you're doing.

Love,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Razzle
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Date Joined Aug 2007
Total Posts : 4392
   Posted 10/27/2007 2:36 PM (GMT -7)   
Yeah, my doctors disagree too. My GI doctor insists I have Crohn's and won't consider anything else no matter what. My Allergist says it's food sensitivities with a Lupus-like Syndrome that may or may not turn into full-blown Lupus (he already ruled out Sarcoidosis, which was another condition he was thinking I might have instead). My Naturopath says Secondary Lupus-like Syndrome, not secondary to Crohn's but hasn't come up with what he thinks it is yet. The Rheumatologist suggested Whipple's Disease with Secondary Lupus-like Syndrome (UCTD). My Primary Care doctor doesn't know what to think - she just wants some answers so I can get some treatment. Trouble is, we don't know what treatment to give since treatments for Crohn's would make Whipple's worse, & visa-versa. If I even have Whipple's (which is in doubt, since biopsy test came back negative). And if it is food sensitivity (which we KNOW I already have some of, just not sure if I'm still eating something that is causing trouble), the treatment for that would be something else entirely (i.e., diet modification). It's all so confusing.

Good luck with your own puzzle. Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 10/27/2007 3:42 PM (GMT -7)   
While razzle you really do have a puzzle. Should we call scottland yard? to get the best on you case. I hope all the doctors are sending their information to each others. Best to you.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 10/27/2007 4:40 PM (GMT -7)   
Carol, I went through the dx and undx for years and also the all in your head dx. Now all but the high risk dr agree with my rheumy. The high risk dr for my pregnancy is mad about antibodies he isn't seeing. I will be asking my rheumy to write him a letter about how unreliable the tests for antibodies can be and how not all people show up in the way expected. Though I did give him a copy of the 11 criteria and circled the ones I presented with- all but 3 of the 11 and underlined the 4 of 11 is all that is needed. I shut him up for now. I know after my blood work he will start again because he is testing the same darned antibodies he had a hissy over. (Ro, LA, Anti-DNA)
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/27/2007 6:09 PM (GMT -7)   

Hi Pat, Connie, Razzle Frank, Sharen, Redrose, Thanks for responding.

First I gotta say WOW RAZZLE I'm with Frank! Your post made my head spin. That' is pretty scarey if they give you the wrong thing. i hope they get it figured out. I thought I had it it bad!

Redrose, I'm afraid things are gonna be pretty wacky for you for awhile until after this little one comes along. I imagine it would be hard for a doctor who isn't really up on your particular health issues to know how to treat you. I mean look at how many rheumy's get it wrong and it's their speciality. Maybe you could get your doctors to comference call? Tell that baby Aunty Carol said hi! You know were all gonna be her aunts and uncles don't ya? LOL

Sharen yep you can't even drink the water anymore. Who'd of thought we'd have to pay a 1.00 for 12 ounces of water. Than you still don't really know what's in it.

Connie, thank you , your always so sweet and encouraging! I hope you are doing ok. I'm kind of behind on my reading the posts.

Hi Pat! it wasn't too bad today. I need to go buy me some long johns though. I'm actually having a few issues that I don't know where they come from. Some chest pains and neck pains. Yesterday and again tonight. Yes mother hen if it gets bad I will go to ER. Plus I keep getting this bone popping or somthing in my left ear. Like TMJ or somthing but I have never had it before. I had the doctor look in it when I went to the rheumy he said no infection so that ain't it. I sooooooo do not want to deal with TMJ now. He said I have osteo-arthritis but I don't know if you can get it in your jaw bone? LOL I'm falling apart. I have laughed several times today though so I am thankful for that. I hope you are getting an handle on these allergies and i'm glad the cooler weather is helping you. Oh sure don't worry that it's making ME miserable! LOL. Just kidding. I love ya! and your right it's good to be part of the family!

love to all

 

 


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


ocean1
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Date Joined Dec 2006
Total Posts : 707
   Posted 10/27/2007 7:21 PM (GMT -7)   

Hi Carol.

It's been a long few weeks for me and this is the first evening I've had time to check the boards.  I'm trying to catch up with some of the posts here with reading.  I am soooo sorry to hear about your diagnosis/undiagnosis/questionable diagnoses.  Been there, done that and know and sympathize with what I know you are feeling.  First my lupus dx, then no not lupus it's PBC.  I am still questiong that diagnosis as well.  I don't know if it is a mental block or the question of is my doc 200% sure now that it is PBC and not lupus.  I started taking the meds for it and got sick from them so I stopped and went back to my GI doc and he said it is PBC but for some reason I just can't make myself take the meds for it.  I even get the pill out and have it in my hand but for some reason can't take it.  I don't know if it is a "gut feeling" that maybe I am questioning if it is a proper diagnosis this time or what.  We all are on such a roller coaster of diagnoses and such that I really question anything the docs tell me is real or not these days.  I went to a new PCP a few times the past month and a half and was not happy with her at all and am switching again to another one that I have heard really good things about.  I am going to make a consultation appointment with her in the next few weeks to go in and talk about everything and see how I feel about her and also ask for a referral for a second opinion about the PBC diagnosis with an actual liver specialist instead of just a GI doctor.  A hepatologist is I think what the specialist is called.  There is a liver specialist about 45 minutes away from me and I will discuss this with my new PCP and see what she says.  I can tell you for fact that the AMA blood test is 99.5% conclusive for PBC diagnosis and that you should at least ask for that test.  It is one that your PCP can order simple enough.  I've had that and it was positive so you'd think it would be simple enough for my brain to accept right? - NOT.  I just feel that on this one, this time, I need a second opinion before I start taking a med that makes me sick and that I will have to take for the rest of my life.  I can also tell you that the symptoms of PBC and Lupus are very similar and what defined the difference supposedly for my GI doc was my alk phos liver level has been high for a few years and the AMA was positive.  You might also ask your PCP to run a complete liver enzyme blood test to include alk phos and AST and ALT levels as well as complete hepatic panel.  I know it is all confusing and scary and frustrating.

I guess I want a second opinion as I have been diagnosed with several different things and then come to find out that they weren't correct and I want TRUE verification of the diagnosis this time.  I am getting to be very proactive and almost downright pushy when it comes to my doctors and asking questions and demanding results.  I've done a lot of research lately on both lupus and PBC and with my symptoms it could be either or both diagnoses and there HAS TO BE some way to confirm for sure what is going on.

I hope you can get some proper clarification of your diagnosis as well soon.  The life of autoimmune disease stinks doesn't it.  My new phrase of my life is "if in doubt, ASK QUESTIONS".  I don't just take the first dx as a sure thing any more.

What was it anyway that made your rheumy diagnose you with PBC and not Lupus?  Just curiousity on my part.

I have also found a counselor I absolutely love and she is working with me to resolve my anxiety without me going on yet another med like an antidepressant.  I have also tried tapering off my Xanax and discovered withdrawal symptoms so am back to my usual dosage daily for it until I can get in with my new PCP to talk to her how to taper off properly so I don't experience the side effects.  My other PCP told me to just take 3 as usual, then 2 the next day and then 1 the next day and then 1/2 of one the next and I'd bee off of it.  WRONG.  I've since learned a slow taper off is the best way to go.
 
Okay, anyway, enough about me.  Hope you are feeling much better and got your long johns.  I've been wearing mine here in St. Louis the past week or so.  Not that it is actually cold here yet but 55 degrees feels really cold to me for some reason and I have gotten out the winter clothes and stuff.
 
Keep us updated on how you are doing and what your PCP says. 
Diane (ocean1)
________________________________________
Primary Biliary Cirrhosis 2007; UCTD 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra, Zantac, Lunesta, Ultram PRN, Xanax, Darvocet, Ursodiol.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/27/2007 11:48 PM (GMT -7)   
Hi Carol--
There is no way I would have or possibly have a disease as serious as primary biliary cirrhosis and not see a hepatologist (liver specialist) and let him confirm the diagnosis and treat it. I certainly wont ever get a biopsy again from someone who is not a hepatologist, since they are potentially life threatening and difficult to perform. My primary care doc who was a really good internist and pHD in a medical college completely misdiagnosed me for hep C and missed my lupus and non-alcoholic liver disease and gave me medicine that nearly killed me that I didn't even need to take. These docs just don't know about the liver. It cannot push up agains the kidney because the kidney is below the liver, though the liver will typically push up against the lungs and diaphragm and sometimes pop out under the ribs. I would just be careful because only a hepatologist is really qualified to make the best diagnosis of PBC because it isn't a clear cut thing. Yes you may have some markers in your blood, but they are not definitive. You alk phosphatase might be high, but meds can cause that and so can liver cancer and other problems that they can only see through a biopsy or at least an ultrasound and you need a hepatologist to look at this stuff. Well, I'm sure you will figure this out one way or another, I just hope you don't get mistreated or problems ignored in the process. I would also be very picky about the hepatologist you see. I believe that the definitive diagnosis comes from a liver biopsy, though I'm nor sure how because it will onwly show advanced stages, I think a hepatologist can do some other tests that may be better at looking at earlier stages of the disease, Diane, what did they give you for your pbc Ursodiol? I don't believe the meds they give you for PBC are going to give you massive side effects, but I could be wrong. I think you have taken much worse stuff for lupus so why not try it for a day or two? You can always stop. That's why I would have a good hepatologist diagnose me and do the proper testing to be sure you don't have something like liver cancer instead. Unless they look at your entire liver through ultrasound and or mri, there is no way they can tell if you have or don't have a lesion and it will cause your alk phosphatase to rise and similar symptoms. Well, I've said my piece and you all will do what you do, but I will pray that you take this seriously and get in to a good doctor, get good and thorough testing, and get good treatment and follow it. YOu need to feel confident in your treatment or like Diane you won't take the meds. Doctors can be wrong, no matter how nice and educated and wonderful they are about other things, they do make mistakes or get overconfident and make assumptions. I know when you like and trust a doctor, its hard to believe they screwed up so bad, but it does happen and it happened to me. I was thanking this doctor so much for saving my life and really she almost took my life and did cost me my reproductive organs, mental ability, and my pigment and oher suff. Well take care and I hope you get in to a hepatologist soon. And Diane, if you have doubts get a second opinoin from another hepatologsit and get testing to support his dix and then consider taking the medicine. It may just make you feel better.


Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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