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Discussion Starter · #1 ·
Well, today I had my frist appointment with the Rhumey.....

I now technically have Raynaud's...but he looked over all my test and blood work and said that the other doc missed one test to make sure that it was not Lupus. So they ran it, I think it was the RNP antibody test? I truly can't remember.

They took eight viles of blood so i couldn't really recall.

But he did think that I don't have Lupus but i that I might have Mixed Connective Tissue Disease/Disorder. I don't know if anyone of you all have heard about it but basically i can have the symptoms of Lupus but it not be Lupus.

I did get some meds for the Raynaud's but because I really low Blood Pressure, I might not be able to take it( because it is a blood pressure medication that they use to treat Raynaud's and they are afraid I might pass out!).
It is 95/60 today and was 85/58 a few days last week....so as you can see where that might be a problem! ;)

So, I am just waiting on those other tests and we will find out more then!!

On another note(I just feel like venting), I am trying to get over my six/seventh sinus infection since November and they have me on 4000 mg of Augmenten a day. If I don't get rid of this sinus infection I am going to go crazy!

Jennifer
 

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Hi Jennifer

Im glad you are starting to get some answers. I wonder was it the anti-RNP test which is typically detectable in people with MCTD? Mixed Connective Tissue Disease actually refers to someone who has characteristics of three specific connective tissue disease - SLE, scleroderma and polymyositis.

The other thing it could have been is the anti DNA (also known as Anti dsDNA) which is more specific to Lupus - about 98% specifity or thereabouts. I know you had a negative test on this last year but he might be running it again to see if its turned positive.

It can be a complicated thing getting to the bottom of these disorders but the treatments are pretty much the same in any event.

Here's a link which explains about MCTD and also UCTD and the differences between both.

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

When do you go back for your results? When you do make sure you discuss treatment options. If your doctor believes you have a connective tissue disorder then he should be starting you on some meds to help control this. Plaquenil is usually the first line of defence and is the most commonly prescribed disease modifying drug. At the very least you should be asking for something to relieve the symptoms in the meantime ((((hugs))))

Let us know what you find out and the very best of luck

Luv n stuff
Joan:rose:
 

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Discussion Starter · #3 ·
Joandublin;499655 said:
Hi Jennifer

Im glad you are starting to get some answers. I wonder was it the anti-RNP test which is typically detectable in people with MCTD? Mixed Connective Tissue Disease actually refers to someone who has characteristics of three specific connective tissue disease - SLE, scleroderma and polymyositis.

The other thing it could have been is the anti DNA (also known as Anti dsDNA) which is more specific to Lupus - about 98% specifity or thereabouts. I know you had a negative test on this last year but he might be running it again to see if its turned positive.

It can be a complicated thing getting to the bottom of these disorders but the treatments are pretty much the same in any event.

Here's a link which explains about MCTD and also UCTD and the differences between both.



When do you go back for your results? When you do make sure you discuss treatment options. If your doctor believes you have a connective tissue disorder then he should be starting you on some meds to help control this. Plaquenil is usually the first line of defence and is the most commonly prescribed disease modifying drug. At the very least you should be asking for something to relieve the symptoms in the meantime ((((hugs))))

Let us know what you find out and the very best of luck

Luv n stuff
Joan:rose:
Yes Jan, that is the test they are runny. The anit-RNP test.

I go back to the Rhumey in four months but I go back to the angioedema specialist in April. They are part of the same group and I will find out the blood results then. I also had some Ige tests run due to the sinus infections constatly reacurring. They ran every Ige test possible, and the only one that came back off was the IgeM and it was low. Which is odd, because the Doc said that it should be high if you have an infection and is was considerabley low. Very odd indeed.

And he did say that the meds to treat the condition would be Plaquenil. All in all I did feel that they were trying to find out what was going on...

Jennifer
 

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Hello Jen, your Bp is just like my Daughter has. we have a lot of trouble with her fainting if she stands too long or whatever. (difficult on crowded trains)
x Lola
 

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I was also put on a blood pressure medication and my BP often runs in the 90/60 range give or take 10 points in either direction. I was placed on it to protect my kidneys. It's a very low dose, and they advised me to take it at night to lessen the orthstatic hypotension risk. So far no more problems than normal for me... perhaps slightly more but it seems to vary anyways and it's within the range of normal at least ;)

I've also suffered from bad sinus infections, which then end up spreading to my ears a few too many times now! The last one they switched me from Augmentin to a "z-pack" and let me tell you - that z-pack kicked it to the curb significantly within a day (fever was almost gone 24-36 hours after the first dose) and the worst of my symptoms were better within 3-4 days. If Augmentin does not take care of it - then I'd highly recommend asking your doctor about trying a z-pack. Sometimes people with immune problems need to be on antibiotics a little longer and a little stronger dose too...

Good luck with everything, and hope they start something soon to treat you even if the bloods don't scream out which disorder you have.
 

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Discussion Starter · #6 ·
LolaLola;499677 said:
Hello Jen, your Bp is just like my Daughter has. we have a lot of trouble with her fainting if she stands too long or whatever. (difficult on crowded trains)
x Lola
Make sure she is not locking her knees! First thing I learned in Band camp..the hard way. ;)
 

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Discussion Starter · #7 ·
Maia;499686 said:
I was also put on a blood pressure medication and my BP often runs in the 90/60 range give or take 10 points in either direction. I was placed on it to protect my kidneys. It's a very low dose, and they advised me to take it at night to lessen the orthstatic hypotension risk. So far no more problems than normal for me... perhaps slightly more but it seems to vary anyways and it's within the range of normal at least ;)

I've also suffered from bad sinus infections, which then end up spreading to my ears a few too many times now! The last one they switched me from Augmentin to a "z-pack" and let me tell you - that z-pack kicked it to the curb significantly within a day (fever was almost gone 24-36 hours after the first dose) and the worst of my symptoms were better within 3-4 days. If Augmentin does not take care of it - then I'd highly recommend asking your doctor about trying a z-pack. Sometimes people with immune problems need to be on antibiotics a little longer and a little stronger dose too...

Good luck with everything, and hope they start something soon to treat you even if the bloods don't scream out which disorder you have.

Well, the z pack is out for me...Deathly allergic to erythromycin. So, no z pack.

I was on levaquin two weeks ago, and it got rid of that infection but I caught another cold within three days after getting better. I actually had the flu, then a stuffy head for a week after that then lead into my sixth sinus infection. In fact that is how it alsways goes. I get a cold, take my asthma meds during the cold(breathing meds mostly), keep a runny or stuffy head, then get a sinus infection, then get a cold two days later.......and so on.

It starts in October and then stays until in gets warm which this year is not in March....:eek:


Well, they do have me on the Augmentin for 28 days so I hope that gets it, but I have been sneezing again, so I think I might have caught another cold.
 

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Discussion Starter · #9 ·
LolaLola;500071 said:
Lunajen, she probably does lock her knees as she is hypermobile. We will work on it. Thanks,
x Lola

No problem...It was one lesson I will never forget! First day band camp and I was eating the grass by midmorning!:lol:
 
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