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Hello Pollianna,
What I know is that you WILL get through life. Some times are easier than others I know. The good thing about being here is that you are with a large number of people who are all finding their way through this. I think we all do pretty well.

If I can do anything to help please ask!
x Lola
 

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Pollianna
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Discussion Starter #3
Aww Lola, am so sorry. I meant me being so daft, how do I get through life.I am so greatful for your post though :hug: and this forum in general

I feel so much better having realised that I have a specific diagnosis. It means that Dr D'Cruz feels that I have a Lupus type form of UTCD. I have more Lupus symptoms than other CTD's. It was this kind of clarity I needed.

I'm heaving a huge sigh of relief because I know if my ANA had not been positive and my RF not shown so high I would still be struggling alone. I'm not worried now that he will "undiagnose" me every time he sees me...

xxP
 

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The Other Illinois Tammy
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Pollanna,
Congrads, I know this is a weight lifted off your shoulders as this justifies all your concerns. I know that is has been a struggle for you and a worry. Your journey is just starting and you learn something everyday about yourself.

Learn all you can and take one day at a time. I feel it is very important to be educated about what you have. This way you can better understand what is going on with you and you can help more with your treatment. One day at a time is all any of us can do. Some days are better than other. I have to be honest with you I have more bad days than good but you learn how to do what you can. This site is a great support for those days when things don't seem right at all. You will live with your dx because you have to just find your limits and adjust to them.

I hope you are feeling well and can sleep better at nights now. Let us know how things are going with you and how you are doing with handling your dx.
 

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Ah Pollianna, I am glad I misunderstood! I would hate to think of you feeling that desperate.

I sometimes wonder how I have managed so long, as I have children who know everything and tell me where I go wrong! Mind you, I have toughened up considerably now and tell them where to get off.
x Lola
 

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Hi Pollianna :)

I'm so happy that you now have that confirmation. I suspected that he had thought something like that from your post just after seeing him. Afterall he wouldn't be treating you for nothing and he's an expert in his field.

Even though you are releived right now, do expect it to be tough at times. Diagnosis and getting through this disease can be very up and down so do call on us if/when needed.

hooooray for you!!!

:grouphug2:

Katharine
 

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Pollianna
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Discussion Starter #7
Have been hit Katherine. I broke down today, I posted on weakness on Pleq. I think it has all gotten too much for me at the moment. I am exhausted on the pills and am finding it difficult to function normally.Put a call into the doc will try to get him to sign me off work for a week or so. I desperately need some rest.

I am relived though to have some form of diagnosis other than Lupus like illness, which seemed so vague but within the context of the diag UTCD,, makes perfect sense.

Thank you all for your support xxP
 

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Hi Pollianna :)

I'd say him saying "lupus like illness" was just a layman's explanation. Afterall, UTCD doesn't mean a lot to many people.

I'm sorry you're feeling down but you will do and I think realising that it is quite normal and you're not losing it is very important.

I'm very happy to hear that you are going to get some time off work. I don't know how you have been coping up until now, many would have crashed before.

Take a lot of "you" time. No trying to sort the house out because you're off!!!!

Rest, rest and more rest. You need it and you deserve it.

hugs and positive vibes speeding their way to you
:hug:

Katharine
 

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Hi Pollianna,

My daughter has the same diagnosis. Her reaction was the same as yours. Just knowing the doctor believes something is wrong and is willing to treat the symptoms was a relief.

I hope you get the time off you need so you can rest.

Take care,
Lazylegs
 

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Hello Pollianna

I hope you can get that time off for rest and regrouping . It is not surprising you feel overwhelmed.
There's nothing at all stupid about not being aware of the UCTD diagnosis option and I am sure Katharine is right that "lupus like" is an easy way for the doctor to explain. In practice it doesn't have any lesser significance than an SLE diagnosis. In fact I am quite sure that many people get diagnosed with 'lupus' whom other doctors would diagnose with UCTD.

Basically, UCTD means there are no specific signs of any particular connective tissue disease.
In the case of lupus that means no proven skin or kidney involvement and no anti- ds -DNA or anti - Sm which are the only two auto-antibodies considered specific to lupus.

It's a good diagnosis in the sense that it doesn't carry the 'stigma' of lupus.

The statistics for its possible evolution according to one study of 65 patients with a UCTD diagnosis after 5 years were: one third with 'UCTD' diagnosis had no disorder; one third remained UCTD and one third developed a defined rheumatic disorder.
In another large study of 665 patients, after 5 years, 34.5 percent developed a defined CTD;12% remitted; and 64.5% remained UCTD. From the most to the least frequent, the defined disorders were RA, Sjogren, SLE, MCTD, scleroderma, vasculitis and inflammatory myositis.
( Source: Dr D Wallace in DuBois p 960)

The UCTD diagnosis does not mean that suffering is less, nor that quality of life might not be severly affected. Sometimes an SLE diagnosis can be ridiculous in practice even though in theory the criteria are satisfied. That's my own case: I have enough criteria including ANA and anti Ro antibodies, plus proven lupus skin problems plus a couple of others, for a technical SLE diagnosis. But only skin and arthritis and fatigue have been problems.

I'd like to suggest you investigate stress relief techniques. Even the most simple breathing exercises and physical relaxation techniques can help very much to reduce the physiological effects of stress. It's rather like putting on a flak jacket.

Many, many hugs :)
Clare
 

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Hi Pollianna,

Hope your not trying to be superhuman :) Its a huge thing to 'manage' life in normal terms as if we were not ill and reconcile having a chronic illness.

There are still bits of me ( huge parts actually) that wont let go of things I feel I need to be in control of. In some ways that helps and in others it bites me on the bum.
Hope you can find some kind of balance.
Be kind to youself:)

Nicky
 

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Pollianna
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Discussion Starter #12
Hi again all. Many thanks for your encouragement. I am a bit of a Hero nikki, have to give that up. You guys gave me the strength to get the GP to sign me off. I am off for a month :eek:

I desparately need some rest am worried to death how I will cope financially but thanks to you guys I realise my health is more important. I will just have to tighten my belt and get myself into debt...:sad:

Saw a lovely sight today, looked out of the window and my one flower bed ( among the weeds) is literred with the narcissus I planted in october. Kinda puts it all into perspective. I didn't even take the time to notice

Hope everyone is doin ok xxP
 
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