[cad]

Hi All,
Had my appointment today.
The rheumy diagnosed MCTD and pointed out a couple of other issues. spondilitis, and a strange curvature to my arms that i had never noticed before.
I wore no make u so he also saw my rash and told him about a couple of other rashes i'd had ans he said i definately have photosensitivity and gave me all the advice to go along with that.
He is starting me on a course of pred at 40mg going down over 5 weeks nd said that he will see how this goes first and then will probably give methotrexate a go.
He is also sending me for a brain scan, bone scan, breath test to check lung capacity and also angiogram
At least i have heard it from the horses mouth and i know its what i was Anyway i just haave ti keep going and try and stay positive for everyone around me. There is always someone much worse off then ones self. I never for get that either.

Thanks so much for all the support i've had from here, it really has helped.
Lots of Love and take care all

Cassie.xxxxx

 

[halfpintfl]

Hi Cad, wanted to see your follow-up. It sure seems like
your appt. couldn't have gone any better. You seem like you have a very, very positive outlook on life, and that is
going to help you tremendously at how you look and handle
this diagnosis. I just wanted to make sure that you were
ok, I should have known that you would be. Keep posting
and sharing , we are all family here.
Be well and smile.:wink2:​

 

[greenhaggis]

Cassie,

I'm so glad you had a positive appointment!

Take good care of yourself,

Hugs Lesley

 

[Katharine]

Wow Cassie!!! I'm so glad that after all your difficulties you have finally had a good appointment and it seems some real action!

That probably doesn't make it any easier to take on board. We wait so long sometimes to finally be taken seriously and that someone give this thing a name but then, when they do, we suddenly feel so terribly lost and just don't know where to go.

Sending loads of strengthening hugs, chocolate and positive vibes to egt you through.

:grouphug2:

Katharine

 

[dudley]

Cassie

I am glad that they finally came up with a DX. I know that the waiting can be ****. At least now you know what you are up against and doc's can get you on the correct meds.

Of couse I wish they had found something that a few pills for a week or so would solve all your problems.

Elaine

 

[Lily]

Hi Cassie,

I'm glad that after all the drama surrounding a follow-up that you finally have a diagnosis! :hug:

It's a strange feeling though and one you will need to give yourself some time to adjust to, prepare to go through a roller coaster of emotions, we all do.

Now you should get the treatment you deserve (not to mention the recognition) when you are really unwell. Methotrexate is a good choice of drug for MCTD and we have a few MCTDers here on it. Combined with the Plaquenil it should help your situation a lot.

Take care and keep us posted, let's hope in the interim the Pred gives you much needed relief.

love
Lily

 

[keebler]

Hi Cassie,

I am glad you finally got a dxed. It is really a roller coaster ride of emotions when you finally get dxed.

Sounds like you have a very good doctor.

Love,
Lyn

 

[cad]

HI All,
thanks all for all your positive comments. Its really kind of you.
I do feel a bit all over the place. i have a part of me that feels glad that atleast they haven't told me its all in my head and that i have a diagnosis, but then feel very strange. i feel as if i need to create the space to have a really good try just to let out all the stuff i've been holding in over the past few months. I am also still a little concerned as to what else may come up withe the next lot of test.
Aswell as the 4 scans i'm going to have the doc os also repeating the ANA the doc is also testing for immunoglobulin and cryoglobulins.
The awful thing is that i went to the bloods reception at the hopital to have my bloods done and the flobotanists couldn't get my blood.
I know this lady well as she always does my bloods but after 3 goes on Monday, she couldn't get anything She said that it seems to be getting worse and said it probably is connected to the disease. She tried the haemotology dep. but they wre too busy doing chemo to do the bloods so i had to come away without them being done.
I for a long time have had terrible problesms with bloods and especially having lines put in. Ususaully have to have an anaesthetist to get a venflon into me.
I know that 3 of the scans definately require lines, that's gona be a challenge
I am also worried that although my anticoagulants came back o.k taht the cryoglobulins may show thickening of my blood. Does anyone know enough about these tests to know if cryoglobuins can be positive when lupus anticoagulant is neg and previous clotting times were in normal range?
My blood pressure has been a up a bit for me, the last few times i've had it checked too.
Oooohhhhhh, so much to ponder!!!!

So sorry for rambling on :rotfl:
Thanks for listening.

Take Care All.

Cassie

 

[Lily]

Hi Cassie,

It's hard to take in the diagnosis and all this testing all at once. So I am going to give you the advice that has held me in good stead over the years and was suggested to me upon my initial diagnosis..............one day at a time it's the only way to deal with this and not become overwhelmed :hug: It's a learned thing and one you will get used to over time (it takes some practice though :hehe: )

Do you have quite severe Raynauds? That may be one explanation for the vein problem. Have they tried butterfly (child) needles to draw blood - usually my veins are pretty good but if they are having trouble the butterfly needle does help.

Increased cryoglobulins can be for lots of different reasons outlined below:

http://www.patient.co.uk/showdoc/40001282/

Good luck with your further testing and don't be too alarmed, just when you think they have finished poking and prodding you they often run all sorts of things just to discount other associated problems. That is probably what all this testing is about, so I hope it all turns out ok.

love
Lily

 

[cad]

Hi Lily,
Sorry for his bu my leer afer s in he alphabe is no working o day hanks o my son, he li le monkey.
ha was very helpful.
My hands are very bad are are never ever normal colour bu i'm no sure if severe raynauds would be classified by ulceraion.
hanks for h reassurance.

ake Care

Cassie

 

[cad]

Oh yes lily by he way yes hey did ry he iny paediaric buerfly bu no luck afer 3 goes.
I'm going o o back o haemaologry on Monday o ry agrain.
I hink i probably wo' sar he seroids unil i've had he bloods done. As i am bad a he momen bu no desperae like i have been and i don' hink a few more days will make much difference.

Cassie

 

[Lily]

Hi Cassie,

:hehe: on the keyboard, hope it 'dries' out soon

Digital ulcers are a hallmark of very severe Raynaud's phenomenon. Has your doctor given you anything for the ulcers? It may well prove the case that once your MCTD is under better control the ulcers will clear up, but there are things to help in the meantime.

http://www.cedars-sinai.edu/5623.html

love
Lily

 

[cad]

Hi Lily,
Am now using on screen keyboard.
It's really great that i have this, It's actually alot easier on the hands than the regular keyboard, but a bit frustrating as it is quite slow.
I don' have digital ulcers but as i said i do have severe hand symptoms.
Thanks for the additional info.

Take Care

Cassie

 

[annada]

Hi Cassie

I am so glad that your are being seen about good by the dr. ,they should be able to help you get to feeling better and your body in better,stable shape. I know I just cringe when I have to be stuck more than once for bloods, my veins are tiny and roll all over too when they try to get the needle to go in.

Good luck with everything sounds like you have good Drs. What a blessing!

Hugs to you,
annada

 

[pukekos]

welcome to mixie world

Hello fellow Mixie,

Congratualtioins on the dx. Even though I, as you, knew it was coming it is still a good day to know that indeed this wierd and wonderful(?) world of being a Mixie is real. The best advice I got from the wonderful people here is that 'you are not crazy or lazy". Lily's advice of 'one day at a time' is very very very true. All the tests you are going to get are important to establish a base line for future testing if needed. I have aweful viens and a needle phobia so I understand the issues related to that. All my blood work is ordered as resting so no hot shower or walks before hand so I always use a hot water bottle on my arms before tests, drink plenty of fluid and allow nothing bigger than a butterfly needle. They only get 3 tries and we call it a day - no more than two tries per person - and no newbies. I have very active Raynuads so that doesn't help either - sounds like you do too

You seem to be taking the same road I did as far as meds go. It has been the better part of six years for me and I can tell you the drugs worked well. I'm not saying I am cured or anything but I lead a semi normal lfe and am tons better then when I started. I am off pred now and take 10mg of metho weekly. I am allergic to plaq so that wasn't an option.

The road from the beginning to now was tough no doubt about it - like living on a rollercoaster sometimes but slowly things get better. As you accept the new you - and learn to like you with the new limitations you know have life opens up all kinds of possibilties. Easier said than done - some days I still have issues with needing to sleep or rest, feeling sick at least one day a week from the metho or having what seems to be endless medical appointments but when I am honest I know it beats, hands down, how I was when this all started.

I wish you the best of luck with all the tests.

hugs
Pukeko