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Hi everyone,
I've been roaming around in here for days and thought it was time to register so I can share too. Reading the supportive posts and kind words exchanged has been encouraging...
I'm almost 50, recently separated female, diagnosed with MCTD based on a positive ANA, over 2400, speckled and RNA of 8.8.
I've been feel crappy for about a year, so unbelievably tired after not much output, pain in knees, ankles, wrists, shins and shoulders feel 'crunchy' and hot, seemed like i hurt 'all over'. (thought it was old age, my weight etc.)

I finally went to GP on July 21, 08 because along with all of the above, I couldn't flatten my feet to the ground and my pinky fingers were 'curling' in towards my hand... some fingers and toes were numb some ached. I thought it was 'bout time to check this out...

GP did bloodwork, saw the results and sent me to rheumy, I had first rheumy appt 2 weeks later. More bloodwork, clearer picture. Next appt on Aug. 8, 08 received firm diagnosis of MCTD.
Went home shocked and cried for two days. Why me, why now, darn and I'm alone now too..

I knew I had to get to work learning about this disease. I planned to limit myself to a few hospital sites such as Mayo and Harvard so not to be overwhelmed and started reading... Once again I cried, the prognosis sections were horrifying to me, but I couldn't stop reading...

This MCTD overlaps with so many other conditions, for me there is a supposed overlap with scleroderma. But rheumy mentioned polymysositis and raynauds, I definetly had symptoms for Raynauds, fingers getting white and stiff after cleaning snow off my car.. :lol: they eventually went back to normal, so no problem.........

I have appts for chest CT, pulm functions, echo, long bone xrays, abg's, and physical therapy... all in one day !!! should be interesting... I fig why not get it all out of the way at once.... hope I don't regret it...

To complicate things a little more I also carry diagnosis of antiphospholipid and anticardiolipin Ab, diag after leg clot and lung clot and 2 miscarriages all spread over 10+ years. Also have had optic neuritis/papilldema........ all over the last 10 years, they were addressed individually but within the last month have been all connected to MCTD... I've been quite the medical weirdo for years.... having all these 'rare' bloodwork and incidental findings like the optic nerve stuff, that was a finding on a normal eye appt. The doctor looked shockingly at me and said do you have a headache ? "what is your GP's name", I have to call him now.... I was having a CT of my brain the next day because the optic nerve was so swollen they thought it was a mass... and on it went.
Throw in diabetes, high cholesterol, bipolar, anxiety... 13 meds and counting. Ok I think I'm done........


And if you are wondering, yes, I am going to rise to the challenge once again.
Thank the universe for a prompt and accurate diagnosis
And pray for a cure....


Good night all............ thanks for reading...perhaps weird, but it felt good to write it out.
 

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Hi Blue Mist

Welcome to the Forum. Its great that you have already found this place supportive and encouraging :)

You have certainly been given a lot of challenges with your health and Im sure you are feeling very overwhelmed at this stage but you do have a positive attitude and that will help you tremendously.

I noticed your other post about the pain medications and I think you are doing the right thing about contacting the 'stand in' doctor to see what they can do while your other docs are away. Being in that amount of pain is certainly not good for the body or mind. Apart from the obvious pain debilitating issues it can also raise blood pressure.

It sounds like you may be a candidate for a short burst of prednisone to get you through these earlier stages while you are waiting on the Plaquenil to kick in. When your own doctors are back it would be good to make an appointment to discuss future pain management. A referral to a pain management specialist might be in order?

Welcome again and I look forward to getting to know you better. I sure hope this flare starts to ebb soon for you :hugbetter:

Luv n stuff
Joan:rose:
 

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Hi and welcome,

I have finally got around to your introductory post...but as they say, better late than never :wink2:

You have been through a lot and some of it can be pretty scary :hug:. It seems you have a good GP behind you and found a good rheumy too.

Some people cry for a few days like you and react immediately, some people (I did this) kind of wait a year for it to sink in and then have an awful hard time accepting it. The thing is everyone cries at some stage and coming here and writing it down is one of the most helpful things you can do. People here do geuinely understand what you're going through without you needing to "overexplain" and the value of that is inestimable.

I am lucky not to have had some of the scares you have had but I have lupus and polymyositis as well as hashimotos (thyroid) and possible APS.

It's good that you're getting all those tests done if only to have them as a reference point if needed in the future.

I'm sorry to hear that you're facing this alone. I know what it's like when you go through a separation and it's not at all nice at the best of times. You have to believe that you will come out the other side. I for one am sure you will with your positive attitude.

You can also reassure yourself with the fact that statistically men who are married live longer than those who aren't but for women the opposite is true!! So, go girl!!! Sorry, I know that really doesn't help much but I thought I'd throw that in.

bye for now,
Katharine
 

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Hi Blue*mist

I just wanted to introduce myself and send some support to a newly diagnosed member of the forum. You look like you have a good GP and that is a real bonus as you may have gathered from reading the list.

I can't type much tonight cos of fatigue and hand pain but my thoughts are with you as you adjust to the diagnosis and the medications and the hospital visits.

The support in this group is lovely and if I can help in anyway with questions you ask I will try to do so.

Love
Sara
 

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Hi blue Mist

I am sorry to hear about your diagnosis and sure hope being a part of this forum helps you out a lot(((hugs)))for support.There is an awful lot of wonderful post in ehre to help you through it all.I am not exactly sure what the differnce is between SLE Lupus to MCTD but sure it is not much fun at all.I am so sorry you are having to deal with this alone but really you are not because there is an awful lot of wonderful people in ehre to help you through it all((((hugs)))).If you have any questions please just ask away and someone will ussualy answer it for you.Please let us know how you are coming along with everything.

Tammy
 

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Discussion Starter #6


Thank you so much for the warm welcome... I am very grateful for this site and all of you... I look forward to learning and sharing...
You can also reassure yourself with the fact that statistically men who are married live longer than those who aren't but for women the opposite is true!! So, go girl!!! Sorry, I know that really doesn't help much but I thought I'd throw that in.
KATHARINE This cracked me up... :rotfl: quite the fitting statistic for him at the moment.. :mad: :wink2:
 
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