I saw my GP today, she is happy to write to the consultant although she is doubtful that he will agree to test me again as the results 5 years ago were negative. I mentioned the possibility of sero negative Hughes. She said she really knows so little about it all.
the good news is she is happy write and ask.
We will see...
Good for you, we have to try with these things, email her the charity website well before the appointment, if no email address, use the email address attached to the secretaries marked for her, and point out there is a sero negative section on the site: ghic.world/
MaryF
Thank You Mary, you have given me confidence to try. let us hope the consultant will agree to see me.
Hi, well done, I'm sure the consultant will see you, do you know which consultant and if they are an APS specialist?
As Mary says email her the charity website info on seronegative, I would also send a copy of your profile here, as it gives a very good account of your health history.
Hi, I am in East Cornwall.I imagine it will be a Consultant in Derriford Hospital.
Thank you for the advice.
There's a few good specialists at Derriford Hospital - might be worth passing their names to your GP for referral. (Look at the list top right corner).
I'm not far from you, I'm in East Devon! Only moved here 3 years ago nut I still see consultant in London.
Have you had additional symptoms since first seeing the consultant? Five years is a long time. You certainly do have a number of concerning symptoms. They must have searched for any possible hématologic problems. But I would want to know how they explain your symptoms even if the consultants cannot pin down a diagnosis. And should you receive préventive treatment? I wouldn’t get bogged down with one particular diagnosis but emphasize that you want to know what is causing your symptoms. I hope you do have a second consultation.
You certainly do fit text book perfect for sero negative APS.
I encourage you to read Professor Hughes ‘ November 2018 Blog , just released. It talks about better detection of sero negative testing kits - I worded that very awkwardly. Have a read and you’ll understand.
I feel there is a very good chance that you are suffering from POTS. It is a manifestation of dysautonomia. Dr Hughes told me when I saw him in clinic in Early Feb 2017 it was an area that was starting to peak his interest more and more. As it happens, I am American. I am also a patient of Dr. Jill Schofield of Denver Colorado. She studied under Dr Hughes for in London for a period of time. She has developed a very keen passion and deep understanding of POTS and dysautonomia in APS patients. She also lectures in the USA and you can view her speaking on “dysautonomia International” I believe. Professor Hughes gives a lecture on that same panel on APS.
If you google center for multi system disease ( her clinic in Denver Colorado) you can peruse through dr Jill Schofield’s website and I believe there is a link to that lecture.
I have tested positive via tilt table testing. Mine is very early and mild. I barely notice it. However, my bowel/ brain dysautonomia can be extremely severe.
My hope is that some of the information I have provided might help you gather new tools and information to help your doctors test you for problems that often go hand in hand with APS, and can be treated to help you feel better.
Have you been checked for Sjögren’s also?
thank you!
Thank you!
Dr Blair Grubb ( also on lecture panel ) is the best in the USA for POTS / cardiac manifestations.
I was referred to an electro cardiophysiologist ) a specialized cardiologist dealing with electrical problems of the heart.) when I was first diagnosed with ,”autonomic seizures” in early 2012. ( pre APS diagnosis.)
This cardiologist has now retired, but suggested I get on the wait list to see Dr. Grubbs. At this point I’ve not persued finding a specialist for this.
I’m more interested in finding a cardiologist period. I have very probable cardiac syndrome x. No cardiologist - not really. I saw my cardiologists replacement and told him I was having chest pain. He looked at a sonogram from one year pre APS diagnosis and said all looks fine- you have no issues with your heart. ( I realize now I had been having cardiac syndrome x episodes.)
I don’t have any idea how to find a cardiologist. I’m still on sumatriptan for migraines. Not sure this is a good idea from what I’m reading here and there. I’ll ask on a separate post.
( see Pinky and Perky? Still so much to learn! rather heart protests if too thick of blood circulated through it. Aspirin will help you with and chest pain , if you ever have it. That’s a very over simplified explanation of cardiac syndrome X. )
thank you
Thank you so much for this support all of you. It helps a lot, I shall watch those talks and email the GP the information about sero negative aps. I do feel I rather overwhelmed her this morning with my request.
GP should be able to order the standard APS tests themselves. First ones I had were done through GP, although at the request of a consultant, and since then I've had two kids tested (both -ve), one at our request and one at GP's suggestion - and both those tests were done via the GP with no consultant involved.
Completely off topic as I think others have given you excellent information. Pinky and Perky, what characters they were, the same as my 7 month old ginger kittens!!! Pinkie has special needs and Perky is a adorable thug!!
I've now been told ok to stop Fragmin at 12 weeks pregnant due to second test being negative.... Nervous
Is St Thomas' discharging patients a lot at the moment?
CIRCLES :(
Anyone with a similar experience?
