Mayo liver transplant/rheumie--want a laugh?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/4/2008 8:42 PM (GMT -7)   
Hi all--
I haven't posted in a while, but I thought you might find this a little ironic or funny in a way. I went to Mayo through the liver transplant center for evaluation of my liver disease progression and also to try to get an adequate diagnosis for the multiple things that are wrong and get evaluated for more spinal surgery.  Anyway, among the consults was the rheumie.
 
So they did the usual bloodwork everyone else has done and it came back with positive ANA but my inflammatory markers were all near normal as were my sed rate and CRP.  So I go in there and I've submitted all the salivary gland biopsies and the gallium scan and show him the pigment problems and explain the MRIS and all and he does a quick pressure point exam and tells me I have fibro!  Like, duh! I'm in tremendous pain from my back and now my shoulder (I can't lift my left arm above my shoulder and it brings tears to my eyes) and have all this other stuff and he comes up with fibro.  After 14 years now, I make it to the "Emerald City" and the wizard tells me I have fibro. devil
 
Well, so he started questioning my ai diagnosis, and I explained that these tests had been abnormal, and they had been submitted to Mayo, and that they had normalized now because I was being treated for AI disease and not flaring right now. He had some trouble getting that. Of course the stuff is normal because I'm under treatment. And, yes, I have fibro, and sjogrens, he finally agreed after I made him look at my salivary gland bxs and eyes on the gallium scan.  Then he told me that, well, sjogrens is just like dry eyes and fibro doesn't cause any physical damage, so I can't have any physical damage, at least from those things. At this point I seriously began to think he was messing with me.  nono
 
All joking aside, I do think he has something in mind. They did alot of bloodwork (about 20 small tubes) and are checking my sensitivity to certain substances, which might explain why my bloodwork looks normal but I'm deficient. He felt the skin on my fingers, which are quite plump now since I gained twenty pounds in less than two months, and the skin is a hard bump, not flexible. I hadn't noticed that. He talked to me about connective tissue disease and though the ortho sent me for nerve conduction studies for my left shoulder and arm, the rheumie is getting the results. They stuck needles in my muscle all the way through to my nerves, shot electricity through it, and then made me move my hands and it hurt so bad.  It was horrible torture! I have some nerve problems that have shown up in tests before so perhaps he will be able to give them a name, maybe it's fibro! tongue
 
I hope you are all doing as well as can be expected and that this post finds you all laughing, at least a little, to keep from crying. 
 
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


hippimom2
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Date Joined Jul 2005
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   Posted 5/5/2008 6:47 AM (GMT -7)   
Sounds like quite an experience. If I were you, I wouldn't really know what to make of all of it. It has to be a little frustrating that you really didn't learn a whole lot. Hopefully all the tests will help them decide what is going on.
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/5/2008 10:44 AM (GMT -7)   
Yeah, hippi, it's beyond frustration to the realm of idiocy. Hopefully, these docs will break the pattern of circular reasoning that leads the other docs back from whence they came with no enlightenment. Its also probably going to cost me a small fortune since they bill for full cost over and above medicare's approved amount. Hope you are doing okay.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 5/5/2008 10:53 AM (GMT -7)   

Oh my.. that needle test sounds very painful! I am so sorry you had to go thru all of this. However, I did get a chuckle out of your Wizard comment. I think a lot of doctor's still like to believe that patients don't know much about their bodies and what is going on etc. They are probably surprised when someone actually has a clue about things. Fibro. Aha! LOL.

Hang in there.

Ti


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/5/2008 12:17 PM (GMT -7)   
I just found that my new dr said fibro the first day out, but hasn't said it again & is leaving alone the meds which were prescribed by previous dr for lupus.....so go figure.

Maybe they are now thinking "fibro" is what we want them to say? Like when all the housewives went in and ask for prozac? (or was it some other drug?)....

I figure as long as they are doing new tests they must not be very sure of the dx yet. Also I don't really care what the actual dx is as long as they treat my symptoms!!!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/5/2008 4:57 PM (GMT -7)   
LOL Lynnwood . . . "mother's little helper" . . . was vallium (sp?)


Marji . . . so sorry your workup didn't yield more info. Your hands sounds like scleroderma . . . ????

I had the EMG test too . . . one with the needles and one without. I didn't experience the pain you described, but the involuntary jerking of limbs was rather un-nerving. Sorry yours was so painful. I was really scared to have that, but it wasn't too bad for me.

I hope they aren't done with you yet. Did they determine a treatment plan or are they still analyzing things?? What is it with needing to "prove your disease" with each new doctor ???

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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/5/2008 7:17 PM (GMT -7)   
I don't know, you guys, but Lynnwood, it just seems I get these male rheumies (except for my sweet and really good local one) but at these medical centers, these kind of arrogant guys that think everything all the rest did was wrong and I'm just a hysterical woman. But last I checked, hysterics didn't cause skin problems like pigment problems and rashes and joint destruction and the other things we get, along with the high ANA.

The ortho couldnt find the plate and screws in my neck MRI either, though I could, so there you go on that. I had a hard time convincing the ortho that I didn't do neck surgery on myself!

I sometimes think they either confuse the charts or just mess with me. I've heard such good things about Mayo that I can't believe that they are really this silly.

Like you say, as long as they let me keep getting treatment. My local rheumie wants me to try Rituxan when I get bad again and I need the liver guys to give me the okay and also want to make sure it's the right type immunosuppressant for my problems. It seems so, but it also seems the plaquenil is finally working, so maybe just try to maintain on that.

Sorry you had to go through that test too Rosie. I have something called increased repetitive potentials and I don't know if it is a demyelinating problem or just fibro or atrophy of the muscles from disease. I guess they will tell me.

I am having a new symptom with my should which is pain in the lymph nodes under my arm and in my left breast and I'm a little scared so I have that to bring up. Maybe the pain is just those lymph nodes calcifying like my ones in my neck and maybe they just have to be removed and biopsied. This is embarassing but I've been lactating a little very rarely, like a few times a month. I think my hormones are just messed up now. But now I have to bring all this up with them.

My mom's immune system broke down recently. They say it just doesn't work anymore. They have her on steroids but she refuses to see a rheumie and get tested for lupus and other stuff. She "forgets" to ask them, which doesn't help my sister or me or our kids in finding out what is going on. I feel so bad for her though. It really makes you realize how important treatment is.

Well, I'll let you know how far they go and all. The good news is that I don't need a liver transplant now, but I have made contact so they have me on record and will watch me. I don't want one until I'm at death's door. I've heard some scary stuff--let me know if you want info on this.

Take care and thanks for the support. I hope that we all get a break from our "fibro"! ;)
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
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, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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