Diagnosis

[larissa]

I went to st thomas today and saw dr Senna.

I have Fibromyalgia and UCTD and some of you may remember, that i have always searched for as much info/answers as possible .

After questions and examination ,i have also been diagnosed with Sjogrens.

For me , i feel better informed and going to st thomas' gave me the best chance of finding out more ........... for instance Low vit D and the shwimmer ????? ( spelt wrong ) eye test which had previously not been checked with my local rhuemy.

Dr Sanna was nice but he told me on two occassions !!!! that he needs to consentrate on his patients with more severe disease ! Ofcourse i understand and will be seeing my local rheumy in future , but i must admit , it did make me feel a bit like , i shouldn't be there or am undeserving of their care. But , i didnt know if i had Lupus or not so was worried , after all it is a serious disease .

Also , i have a question .........Am i right in thinking the UCTD means a separate disease than Sjogrens ? Does undiferrented mean unknown ? he did say that i dont have enough symptoms in one area to say : thats the one you have? sorry probably a silly question!

So thats it for now ! I am very pleased he didnt diagnose Lupus and hopefully never will !

[Purpletop]

Undifferentiated means you have a mixture of symptoms across several connective tissue diseases, so you may have the dry eyes from Sjogrens, the joints from rheumatoid arthritis, the hair loss from lupus, that kind of thing. At least the treatment is the same across all of them, so hopefully the symptoms will resolve soon after starting it.

As for the more deserving cases, I'm sure there are many of those but that doesn't mean that the rest are less afraid of the disease, particularly due to its progressive nature.

Well done for going through it, you must be exhausted after today, lots to take in and the apprehension of not knowing what will come out. Take it easy this weekend.

[larissa in reply to Purpletop]

Thankyou , for understanding where i am coming from and i do feel happier in knowing more and from your explanation x

[mstr]

Hi Larissa, so pleased that you have a diagnosis, of which UCTD is. I know you have had a bit of a wait too. My rheumy nurse said that over time one condition can become more prevalent than another. So for me it is lupus and polymyositis and time will tell which one if any or both become more progressive or remains stable with medication.

My rheumy nurse said that the UCTD is also more of an American terminology and is really MCTD - which I guess kind of makes sense if you think you will have symptoms of more than one connective tissue disease. Rheumy nurse also told me that sjrogens is really just a 'cousin' of lupus.

I hope that you are ok after your diagnosis and the long wait that you have had leading up to this. x

[larissa in reply to mstr]

Hi Mstr , Sorry for being late with my response but i've come down with some sort of coldy headachy virus so havent been on here !

You have also explained UCTD which has helped me understand , thanks.

I was actually relieved to have another diagnosis , and i know you know where i am coming from !

I think calling it MCTD makes more sense to me ( it does what it says on the tin! ) if you know what i mean x

[mstr in reply to larissa]

Hi Larissa, good to hear from you. Hope your virus is on it's way out. Good that we can all help each other xx

[roobarb]

Hi Larissa

It made me feel sad for you that that Dr Senna implied you are not the most deserving of cases. Maybe your life isn't hanging in the balance because of your illness, but the fact that you have had to take yourself to St Thomas' to get a diagnosis, speaks volumes about the difficult journey you must have been on. I have always heard such wonderful things about St Thomas', but I guess they are stretched to the limits, like any other NHS hospital. Your visit served it's purpose & you got your diagnosis. So you need to find a good rhuemy locally now, to continue your care.

I have had a look in some of my lupus books for info on UCTD that might be helpful for you. The Lupus Book by Daniel J Wallace describes UCTD as an 'almost lupus' condition. In studies he says patients diagnosed with this can go on to develop any of the other rheumatic diseases. He says that UCTD is rarely organ threatening & less serious than SLE. But it seems to imply that it is still possible for you to develop lupus, so monitoring of your symptoms & blood work is important for you now.

I can't find much info in my books about MCTD, but I know there is very good info on the Lupus UK website, as I looked at it recently for my Sister. It sounds like a more serious disease which can be organ damaging.

I know from my own experience that once you get a diagnosis, it is the start of a whole new journey. It's great that there are sites like this, so that we can all keep in touch & learn by each others experiences. The support for patients like us is so sadly lacking in the care system at the moment. Thank goodness we've got each other.

Take care, & stay as well as possible. X

[larissa in reply to roobarb]

I do feel like i,ve reached a milestone and on a new journey ! you couldnt have said it better !

I do think Dr Sanna was a bit insensitive ,and maybe he didnt mean anything by it , but thats how i felt , but letting that go and moving forward!

Do you know, i have gained so much from people on this site ,its priceless , thankyou all x

[roobarb in reply to larissa]

It's great to hear you are feeling so positive. I don't know what I'd do without this site either. X

[Adamine]

Hi,

What a shame he felt the need to let you know about his "more severe" patients.

We ALL (his other patients included) to be treated individually - OUR own ailments are our main concern and have a huge impact on our lives and abilities - it turns our world upside down.

I have UCTD - and my Rheumy explained it's like they have a row of boxes with a different kind of CTD in them - thos of us with UCTD are sat outside these boxes and one day could find out which box we should be in - or not...!!! As the person said before, you could still have Lupus.

I just feel so sad the Doctor felt it was appropriate to say that to you - even if he thought it he should have been professional enough to just keep it as a though.

Keep strong and always look to whats the best for you and yours Xx

[misty14 in reply to Adamine]

I too have been given the diagnosis of UCTD and have found these postings about what this diagnosis is so helpful. I've been struggling for a diagnosis for 26 years with deteriorating health, I've just come off 2 immunosuppressives, taking steroids only and trying to reduce those. My Rheumy wants to see what symptoms come back etc to hopefully one day pin it down properly. I'm sorry Larissa that the doctor at St Thomas's said what he said to you, totally unprofessional, let's hope he was having a bad day, no help to you at the time and he should have acknowleged your struggles. I hope you improve healthwise.xx

[larissa in reply to Adamine]

Totally agree with you . I do understand how difficult it must be for those with more severe cases and i am so thankful for the things i can still do etc but i can think of other ways he could have told me .

[larissa in reply to larissa]

OOPS! The previous post was meant for Adamine and misty !

Thankyou x