Author Topic: Great Not sure I like Second opinions..  (Read 2730 times)

12lovehim

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Great Not sure I like Second opinions..
« on: August 19, 2011, 11:15:40 PM »
Hello All.. I am most positive everyone here has gotten the run around.. When I found this great family it was because yet another Dr changed my DX from SLE with secondary SJ & RA to Primary Sjogrens... Due to SSB being 12.0 and DNA within normal limits once, was not the first test..

Well armed with 12mo worth of blood tests, x-rays, Mri/Mra, I got a second opinion..  The new Dr was only 6 min from my house VS 45min drive.

Ok office was a nightmare.. 15 doctors use this office, and 2 days a week it acts as a the hospitals off campus Urgent Care clinic.. Every Doctor was at least 30 to 45 min behind.. So I walk in to Chaos, angry people and rude beyond belief Staff... (forgot checkbook.. and the office clerk said I would go to end of line till I paid the 12.00 co-pay).... and I have light sensitivity issues.. and this office was super white, with big bright lights.. (killer on eyes...)

My Hubby and I laughed saying the Dr better act like an Angel and speak like manna falling from heaven before I ever come back..

Oh my, an hour and half after my appointment time.. the Sweetest Angelic Doctor walked in..

She reviewed all the documents, even thanked me for bringing them.. But changed up my DX... or just change it a bit.. She is the only Doctor to mention serious Fibro issues.. She is also a Prior military Doctor and said that many retired military end up with Fibro due to the loss of stress in our life..    She is very concerned that the RA that I was told I had, then not had is actually in spine now.. causing issues of neuropathy in my legs..  But she said.. wow you have really bad Sjogrens.. and your tests tell me that you have a really, really high ANA... So we know you have a Mixed Connective Tissue Disorder that is autoimmune... time will tell with systems what it truly is.. (oh I am 5'6, 119lbs and she said I am also positive for Autoimmune thyroiditis ) Ugg what don't I have right now..

So was second opinion a good idea?? I just can't picture going back to that office again.. and the Dr was great.. but she turned my DX into another guessing game.. UGG..

So my Sjogrens family.. Should I do all the new testing, xrays and meds.. and change drs.. or go back to "Primary Sjogrens"?

As far as meds are concerned.. She wants me on pred all the time.. and not plaq anymore either due to seizures issues.. She really wants me to do testing before she can figure out if I'm sick enough to risk Umbriel or humera for side effects..

( I know that it will be my choice in the end.. just wondering what others think.. ) Please someone tell me you have gone though something like this..

K.. Thanks everyone.. Keri

         





Joe S.

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Re: Great Not sure I like Second opinions..
« Reply #1 on: August 20, 2011, 03:34:05 AM »
It sounds like your new Dr is a winner, the clinic is not. Would an early appointment work better?

Auto Immune diseases like to party and often invite their friends.

I have gone through more doctors than I remember since 1983. Some die, some retire, and some are not worth the air they breathe. Some think they are gods while others think they are Gods gift to humanity. If I find a good one, I try to stay. The latest that I have saw spent the whole time typing on the computer and reading my file on the computer. A couple of seconds were spent shining a light in my eyes and throat. Two labs were ordered.

If you found a good one, you can put up with a lot.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Nancy60

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Re: Great Not sure I like Second opinions..
« Reply #2 on: August 20, 2011, 01:15:16 PM »
Which diagnosis/treatment do you feel most comfortable with?  If it is the one this new doctor gave you (she sounds good from what you said), maybe a first thing in the morning appt would be better for you, or does she have a 2nd office you could go to that might have better staff/atmosphere?  I would first go with the doctor/treatment/diagnosis you feel is the right fit for you, then try to figure out a way to deal with the office situation. 

Nancy

12lovehim

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Re: Great Not sure I like Second opinions..
« Reply #3 on: August 21, 2011, 10:51:25 AM »
Hubby and I think we like this DR because if you find a compassionate, kind Rheumy... Keep em... also we think that I will stay in the car till I get a room, and will bring a sweater (due to the really good air conditioning they have)...

Thanks everyone.. it's hard when you become comfortable with a DX and it keeps getting changed.. But as I have read with others, this is so so common with autoimmune... And I would rather have a Doctor that is looking under every rock than one that is telling me the Rocks aren't there...

The other Dr I had seen always acted like I wasn't sick enough for her.. She deals with the "death bed" type patients.. so to her I am at the lucky stages.. ( This has never felt like lucky)  and the New Dr understood I can't do what I used to..

Thanks all... Keri

bsnook

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Re: Great Not sure I like Second opinions..
« Reply #4 on: August 21, 2011, 05:54:20 PM »
I'm new so I don't know if this helps, but MCTD is just that, it includes a lot, if not all the disorders(autoimmune diseases) that were listed.  I'm 60 and have been diagnosed just in February with MCTD including Sjogrens, Fibro, and Polymy(sp) so far.  In 1995 I was DX with scleraderma and then told no, it's osteo.  This is the first I have seen a specialist since then.  I'm having neuro, psych and ortho issues alongwith my eyes.  I just go with the flow, it doesn't do any good to worry.  What will happen will happen.

12lovehim

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Re: Great Not sure I like Second opinions..
« Reply #5 on: August 21, 2011, 06:09:33 PM »
Welcome bsnook, glad you posted... 5 years ago my old PCM told me I had mysthemia gravis then oh well.. no you have depression.. So with new PCM  Dr in hand the last 9 months have been one DX after another..

Stay here and enjoy our on-line family... I don't know what I would have done without everyone here on my really bad days...

Keri

Meld256

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Re: Great Not sure I like Second opinions..
« Reply #6 on: August 21, 2011, 07:25:21 PM »
Hi bsnook,

Also glad you posted, and want to Welcome you to Sjogren's World!  :D

Sounds like you've been through a list of doctors and diagnoses just as many of us here have. I hope you'll look around the site, and keep posting.  There's loads of information and some friendly people who care and understand.  We look forward to hearing more from you!

Take care, and again, welcome to our place.
Melinda

Joe S.

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Re: Great Not sure I like Second opinions..
« Reply #7 on: August 21, 2011, 07:26:07 PM »
bsnook welcome to the forum. You will find a lot of information here.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Meld256

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Re: Great Not sure I like Second opinions..
« Reply #8 on: August 21, 2011, 07:30:16 PM »
12lovehim,

You know how sometimes we can answer our own questions?  Maybe you've done that...you've found a rhuemy who may change a dx but sounds as if they are really willing to work with you and find all the answers. 
It's really up to you, of course, and what you think is best for you.

Hang in there; we are all with you, our Sjoggie friend!
Melinda  ;)