Add another to the list.

[johare]

Just got back from the hospital with my 29 year old son.

As you may remember in the summer he had to return home as he was in thyroid crisis after being diagnosed with Graves disease and the got a large DVT in his groin. I have a history of SLE, sjorgrens, RA, Hashimotos, etc Then my grandson (8 years) was investigated for autoimmune kidney problems.

They have said my son has APS, which is not a surprise given the DVT, but they then said it is not related to the Graves and none of this is genetic. We both have seizures. His sister has anaphylaxis, asthma and eczema .His grandfather has APS.

I rest my case. They still will not do blood tests for my other children. The doctor walked in, told him the result and walked out. No other information.

[whisperit]

Uggh. Both the manner of the doctor and the refusal to test are baffling, johare, just baffling. There are times when I see some doctors and think, "You really wish you hadn't gone to med school, don't you?" followed immediately after by, "BUT DON'T TAKE IT OUT ON ME, YOU BUFFOON!" Seems like you have more battles ahead. Good luck and hope you can find someone more sympathetic (or even vaguely human) who's prepared to listen x

[johare in reply to whisperit]

Thankyou for the reply. I know there is nothing to change the situation, but the one legacy we can leave our children is that having our diagnosis can allow them to be aware. If two of four of my children are autoimmune and my grandson has been unwell, this should at least alert doctors to test the remaining siblings. The lack of information given to my son about his two conditions and how to manage them was non existent. The only person how has taken time was a DVT nurse six months ago. This is preventative medicine. We are hoping to try to take him to our old private doc in London just once so he can ask questions. But this will not help the others.

[Paul_Howard Partner LUPUS UK in reply to johare]

Hi johare ,

Unfortunately our knowledge about the development of many autoimmune disorders isn't sufficient enough to effectively screen for high-risk cases outside of a couple of research trials.

Due to the many genes that can be involved and the requirement of an environmental trigger to develop most of these diseases, a screening test would not be sufficiently accurate. For example, studies of identical twins have shown that if one has lupus, the chances of the other sibling also developing the disease is only around 25% despite identical DNA.

There is research being done to hopefully try and identify high-risk individuals and even develop a potential vaccine to reduce the risk of developing lupus, but these are early stages and we don't yet know whether they will be successful.

[johare in reply to Paul_Howard]

Hi Paul, thanks for your reply. It would be really nice if the doctors spent the time to say just that to myself and my son. I suppose I know that we cant screen for auto immune chances with my other children or grandchildren, but the high incidence within families suggests that at least families should be spoken too. My son David, only has the information I have researched with my nursing background. There is no nurse specialist and between us we are seeing six consultants. My GP missed the signs of thyroid crisis and DVT. I suppose I have become extra vigilant and would like to be one step ahead. Many thanks.