Referral To Rhemutologist

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amanda
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Re : Referral To Rhemutologist

Postby amanda » Wed Apr 23, 638302 7:20 pm

So I went to the doctor and had the many more vials of blood taken.
Dr. said that defintely something is going on that is Immune related, the what exactly is not known yet. I called today to see if the results were in and was told to call back on Thursday so that's what I will do.

The dr was really most interested in the protein spillage and the fact that the nephritis that I have has never been diagnosied as anything - also he was interested in the multiple miscarriages that I've had - he was really like Dr. House - not very nice but I could tell he was a really good doctor. He's getting the peri notes now and talking to him about what tests he did while I was in the hospital - I have a feeling he is going to be disappointed.

Hummm..the fun never ends is right Julie!

trish
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Re : Referral To Rhemutologist

Postby trish » Fri Sep 29, 638299 12:41 am

I don't have any ideas but I hope you find some answers soon. Glad at least to hear that your BP is more under control & that your appt. got moved up! Keep us posted. ((HUGS)))

deerhart
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Re : Referral To Rhemutologist

Postby deerhart » Thu Sep 28, 638299 6:30 pm

Amanda

It is VERY VERY VERY common for a positive ANA to suddenly turn up. Many people diagnosed with things like lupus, RA, etc have negative tests for years (but symptoms) and then suddenly the test goes positive. No one is really sure why but its extremely common.

summerw77
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Re : Referral To Rhemutologist

Postby summerw77 » Sat Sep 16, 638299 11:20 pm

Hugs. Wow that's scary. I am sitting at **** Clinic right now trying to get answers........so girl I hear ya! It's frusterating.

amanda
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Re : Referral To Rhemutologist

Postby amanda » Sat Sep 16, 638299 4:13 pm

Thanks!
My appointment was moved up to next Thursday - they had a cancellation.
The rash has gone away but the joint pain has not - it's hard to stand up with Anna Grace in my arms without holding onto something because well, it just hurts.

It doesn't hurt too much just all the time though - just when I have to move around a lot. Of course, my weight isn't helping that issue either - I just cannot seem to lose weight - no matter how much I change my diet. I'm breastfeeding right now though so I'm not changing it too much.

So, I'm probably in limbo land but at least I'll be doing something about it or at least trying to do something about it.

Thanks so much for your answers - they really helped. I'm still a little scared but hopefully it will be okay.

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jamie w
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Re : Referral To Rhemutologist

Postby jamie w » Wed Sep 06, 638299 2:38 pm

Amanda,
I hope maybe they can find an answer for you but that it is an answer that is easy to deal with, not something bad going on with you. I actually have a friend at work who was expeiencing a bunch of the same symptoms as you. He went to doctor after doctor and they told him all sorts of things like he was just a hypochondriac or he was just depressed... He knew something more was going on and he also said that his sister does have lupus so he knew his chances of autoimmune were possible. After months of pain and suffering and being told he was crazy he finally went to the rhematologist. He was diagnosed with rheumatoid arthritis and the rash turned out to be some type of vasculitis (I think). He is now on methotrexate and prednisone and feeling so much better. Both of those meds have horrible side effects but the side effects are treatable so he says it is tolerable. I hope this is not the case with you but I just share his experience in hopes it might help you a bit. I hope your appointment goes well. Keep us updated please.

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julie f
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Re : Referral To Rhemutologist

Postby julie f » Fri Aug 25, 638299 9:41 pm

Amanda,

The fun never ends right?!

About a year and a half ago, I started to have all kinds of weird symptoms too and was bounced around between a rheumatologist and neurologist. When I was finally able to see the rheumatologist he reran all the bloodwork and added a bit more. Based on those results he did a little more and still came up with, "Hmmmm....?" The best advice I can pass on to you is to go in prepared to leave without a clear cut answer. All of my doctors told me that unfortunately for us girls, autoimmune diseases can "brew" for years and years before there is anything clinically diagnosable. It was so frustrating to me to feel so poorly yet not have any answers. To be prepared for the appointment, I would just keep a little log of your symptoms and the dates they started and ended. When you go in, it's helpful for them to see it on paper rather than you having to try and remember it all.

I know that it's scary and nervewracking. I do hope that you get some answers soon.

Keep us posted.

aggie95mom
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Re : Referral To Rhemutologist

Postby aggie95mom » Sun Aug 13, 638299 12:06 am

If you do have something going on, thank goodness someone found it! As for the rheumatologist visit, I had the same blood test results you mentioned before I went for my first consult last summer (I wasn't pregnant). My rheumatologist ran a bunch more blood tests that showed I did not have systemic lupus or rheumatoid arthritis even though I had some of the markers in my original blood work from my GP. He did a lot of looking at my immune system (with my hematologist) and the consensus was I had a lot of soft signs of something auto-immune, but nothing textbook. I went on a low dose of prednisone for three months and felt SO much better. I've felt great ever since and all of my follow-up blood work has been good.

I have developed discoid lupus, though, during this pregnancy (it's lupus on the skin, not in your organs). My rheumatologist doesn't know if it will just go away post pregnancy or if it's something we'll have to treat more aggresively.

Glad your BP is behaving itself. Always nice when something does :)

amanda
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Referral To Rhemutologist

Postby amanda » Sat Aug 12, 638299 10:43 pm

Don't know if anyone remembers but to regress, after I had Anna Grace I started getting all these wierd rashes, joint stiffness, and I kept gaining weight even though was I eating less than ever (boy, that's a bummer!) plus my bp would not get controlled. They did the usual auto-immune workup and I was positive for ANA with an anti-nuclear pattern, postive rh factor so, they referred me to a rhemutologist (which of course I can't see until August) - do you have any idea what they are going to do?

I checked and it says that the positive ana (which I know alone is not a big deal) with an anti-nuclear pattern is a sign of scelerdoma (?) and/or lupus.

Wouldn't it be most ironic if I've had one of those diseases for my whole life and my perinatologist found it? I mean, think of all the tens of thousands of dollars my nephrologists have been paid throughout the years - geesh!

On the plus side BP is now well controlled with the addition of Norvasc - 5 mg so that's a plus!

Any ideas? Anything you guys would ask? I'm a little scared here - any support would be welcome!


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