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Long awaited diagnoses

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Posted 9/16/2011 4:32 PM (GMT 0)
Hi folks...

I have posted on and off with my adventures to multiple specialists...and finally we have an answer...

drum roll please

I have Multiple connective tissue disorder...the rash I got after spending 30 minutes in the sun was biopsied and confirmed vasculitis...seizures have now started to rule my world and the contrast MRI confirmed central nervous system involvement...so there we have it...I am not going crazy, I know why I can't keep anything straight, and even though I was flaky before this all started I have turned into an absolute airhead..so much so that my husband has way too much ammunition for humor ; )

My rhuemy was so cute though...in a good way.... when I went in for my followup appt after 2 biopsies, 2 MRI's, a 48 hour take home EEG (which did confirm the seizures), 3 rounds of bloodwork and a partridge in a pear tree in a 3 week time span she said " so I don't think it's fibromyalgia" and then laughed this adorable little chuckle which really did put me at ease when she delivered the news..she says she wants to call it Lupus...but she knows now it is auto-immune and wants a lumbar puncture to confirm...my neurologist wants a map out of all the veins an arteries in my central nervous system to see how advanced the neurovasculits is and told her no lumbar...I vetoed them both and said " you know it has taken us almost 6 months to get a diagnoses, so what is another month...I could really use 4 weeks off from tests" they agreed.

I am now on Plaquenil and some anti inflammatories to see if my symptoms abate as well as Lamactil which is an anti seizure medication. I still have all the pain and fatigue now exasperated by the seizures but for the first time in almost a year I have hope.

I guess the reason I am saying this is don't give up hope. It took me 6 months but I finally got an answer and hopefully with the correct treatment I will improve. Listen to your body and make sure your doctors listen to you. I lucked out...my rhuemy never stopped looking.

I hope everyone feels well this weekend and is able to do something you enjoy!
Posted 9/16/2011 5:18 PM (GMT 0)
what I failed to say in my earlier post ( yes the flakiness continues) is thank you!

Thank you for you unfailing support
Thank you for listening when no one around me could understand how I felt
Thank you for not thinking I was crazy
Thank you for your words of encouragement
Thank you for your prayers and well wishes
Thank you for picking me up when I couldn't stand on my own 2 feet
and most of all

Thank you for allowing me the honor of being a part of a community of such brave, honest and open people.
Posted 9/16/2011 5:29 PM (GMT 0)
You are FINALLY getting somewhere!  I'm sorry  you are having these problems.  Robin, aka Crazykitty, has connective tissue disorder so I'm sure she will chime ion as soon as she reads your post.  If nothing else, you have a load off your back with a diagnosis.  No, you are not crazy.  The people that say you are, including some doctors, are the totally misinformed ones. 

 

Yes, we do have a good idea of what you are going through.  I'm glad we have such a wonderful forum and everyone pitches in and tries to help each other.  I hope you continue to post here because much of what you are going through, we are going through too.  We do learn a lot from one another.  I've had fibro for 24 years and still am learning new things. 

 

Well,  rest up and enjoy your month-long reprieve from testing.  Have a great weekend!

 

Sherrine

Posted 9/16/2011 6:18 PM (GMT 0)
Hi Mrs.Bubulz, I am glad that you have recieved a diagnosis, now you can recieve proper treatment. It took years and 3 rheumies before I recieved mine. I have MCTD...mixed connective tissue disease...my mix...lupus, RA, and scleroderma. I've also presented with positive ANCA vasculitides...the jury is still out whether I also have vasculitis...have MPO type.

In the past, I've been on plaquenil....be sure to get a base line eye exam and one every six months when you are on that med. Your doctor probably informed you of that. I'm no longer taking prednisone and azathioprine, but do a weekly dose of methotrexate. All cases of MCTD differ and treatment deponds on symptoms. You will still do lots of bloodwork, because of the meds and monitoring but it is a relief to know what you are dealing with.

I also have fibro and found no matter what you have, you have to take one day at a time. I still live a fun and pretty active life.

Wishing you the best and keep posting :)

Hugs, Robin
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