Blood tests

[donnabrain]

Think I have reached the end of the line with my NHS appts

after being discharged again from the unit a few months ago I emailed my consultants secretary twice but although she showed my emails to the prof I got no reply

then at a recent GP appt she wanted to re refer me but noticed it wasnt long since my discharge so wrote saying that she felt I needed to be seen again but if they were unable to see me could the Prof give me a telephone call

I got a letter saying that I did not need to be seen again as all my recent bloods were normal

well the thing is, I had not even had any bloods taken at my last four appts at the unit (something I mentioned in my emails) and apparently my blood taken at the GP,s were not so normal

the letter said that they would arrange for the lupus nurse to ring me

that was 4 wks ago and so far no call

Am definitely going to book an appt at London bridge although I will have to stick this on a high rate credit card which I am struggling to get down

In order to keep costs to a minimum I shall ask for bloods to be taken at my GP,s first and take the results with me

what tests should I request?

[MaryF Administrator]

Oh dear, sorry about this, here are the blood tests: hughes-syndrome.org/about-h...

Also get them to do your Thyroid function, (detailed one), also Vitamin D levels, plus iron and B. Yes go along for an appointment at London Bridge, in the mean time, it is your right to complain about the hospital via PALS. and also NHS choices leave feedback, as this really is NOT good enough. You need alongside London Bridge to get your NHS care back on track. All the best. MaryF

[Manofmendip]

Hello Donna

I agree with my colleague Mary.

Which Prof have you been seeing?

Dave

[donnabrain]

Thank you for those Mary

Manofmendip, I was seeing one of the Prof's at St T's.

I first saw him when he was just "Dr" and he was brilliant, then when he went away and I saw a couple of others I was not so happy, but as soon as he came back with his new title I saw him again and was glad that he re-instated my diagnosis as it had been refuted while he was away

However, the last time I saw him there was as others have mentioned a different feel about the place and I also felt that the Prof was different too, he was in a hurry to get to a meeting,so very different to the usual Prof, who had always been very patient and never made me feel rushed before

I probably wont complain as I made an official complaint about 8 years ago about my GP and I was struck off

this happened at a time when I was very poorly and I found the whole process, which took about a year, very stressful

One last question, when making an appt is there a long wait?

[MaryF Administrator in reply to donnabrain]

I take a lot of trouble to give positive and detailed feedback about hospital and GP services as the staff are often demoralized and working under pressure. However equally so, if I found a service to be lacking and detrimental to the well being of my family, I would alongside them, write detailed feedback on NHS Choices, feedback is read beyond the hospital! MaryF

[donnabrain]

Do I just google NHS choices? in order to leave feedback

[Lure2 in reply to donnabrain]

Have you been diagnosed on symtoms or on antibodies for APS? You had a Professor. What did he say? Did he understand APS?

You are only on Aspirin for your APS. Is that enough?

Best wishes from Kerstin in Stockholm

[donnabrain]

Tested positive in 2006 and again 2007, since then negative, yes, my Prof is one who does understand APS

He says the aspirin is enough, but I don,t feel that it is due to symptoms

[Lure2 in reply to donnabrain]

I am so sorry for you. Good that you are trying so hard now! I have already crossed all my fingers on one hand.

Good luck from Kerstin in Stockholm

[donnabrain]

Thank you Kerstin

[Hidden]

I am sorry to read this, I had similar following dvt, positive tests and symptoms only to become sero negative and booted back to GP by St T. It is only due to the Professor (Hughes) who reinstated my dx and worked with the rheumy at my local hospital. Back on Warfarin and on the whole working well. Please keep with it and keep a file of all your comms with health professionals. Good luck. X

[donnabrain]

Thank you

[GinaD in reply to donnabrain]

Warning. I'm setting out on a rant:

Being de-diagnosed is a category some new ( to me) doctors seek to put me into.

Whats up with that?

I always believed, ( as I had understood from my physician Father) that once diagnosed with an autoimmune disease, you always have that disease. You may go into remission, ( Hooray! Youre doing something right!) your blood markers for that specific autoimmune disorder may return to normal levels, ( Double Hooray!) but you'll always have the illness.

In other words, " remission" does not equal " well."

But now I find in my own life, as well as from posts on this site, that now "remission" does equal " well."

What changed? What study? What data? What theory? Can someone explain?

Embracing my suggested de-diagnosis would certainly be good. Eat whatever I want! Return to learning how to ski, off trail mountain biking and white water rafting again! No more bimonthly blood draws!

But, as the patient who nearly died while waiting for a diagnosis, the patient who was told time and again that her scary symptoms were the result of "nerves" ( only to find that an MRI testifies to evidence of countless mini strokes,) --after all that. You know what? I don't believe them!

So again, does anyone here know of any papers, data, double blind trials etc which points to the existence of any SCIENCE behind these " de-diagnoses" rather then attempts to save money or time? I appreciate that studies may show that the cost/ benefit ratio , or numbers to treat ratios indicate that stopping anti coagulation therapy for Hughes patients who are now sero-negative may be a net gain. But I've been burned.

In the words of a classic US hamburger commercial-- " Where's the beef?"