London Bridge visit with Prof K

[crista1]

I have to say firstly how lovely Professor Khasmata was when I visited on the 21st. He automatically put me at my ease. He straight away told me I had APS from the information I had sent and further info I had taken with me. I will have to visit again soon, but I need to visit my own g.p first to ask a couple of things. A huge weight as been lifted off me and that of my family also. I paid privately for my consultation but it was the best money well spent and if you can pay even for the first consultation I would recommend it for the peace of mind xx

[MaryF Administrator]

I am pleased, a lot of us have had to do this, and if you have any books on Hughes Syndrome/APS or intend to have any through the charity, hand them on to GP afterwards, all the doctors/consultants around myself and children have read the lot! MaryF

[crista1 in reply to MaryF]

Hi Mary. I will do. Thank you x

[ehc918]

What are your symptoms?

[crista1 in reply to ehc918]

Hi ehc918.

Different symptoms over the years on and off. Fuzzy head, dizziness, loss of vision, issue with kidneys, brain white matter hyper-intensities, fits, migraines, issues with joints - cervical spondylosis, depression, recent diagnoses of hearing loss in both ears, constant tiredness, suffer with digestive issues and I have a shocking memory. These are some of my symptoms.

x

[Kernow]

I am so glad your appointment went well. In the past I too was greatly relieved to receive a diagnosis. I think of this place the 'best helping hand' you can get. All the consultants are 'lovely' and the speed of stress release is unbelievable. Isn't it great when someone understands and in the space of an appointment puts you on the right road? I echo your recommendation: a consultation is money well spent.

[crista1 in reply to Kernow]

Thank you Kernow. Will see him again after I have seen my g.p next week.

[GinaD]

It's hard to explain to someone who does not have a poorly understood chronic condition -- the huge relief one feels from talking to a doctor who " gets it" and finally, formally, confers a diagnosis. It's not that we're happy we're sick - ( which is one basis for the "nutter's" attitude) it's that we're happy because someone officially recognizes we're sick.

There is one thing worse then having a life long illness. And that's having an undiagnosed life long illness.

Congratulations!

[crista1 in reply to GinaD]

Thank you Gina G. I cannot think of anything worse. Good to know I can now be treated in the appropriate way. Take care. x

[chrissybell]

I'm surprised we didn't meet - agree with all you've said - he was very reassuring and lovely.

[crista1 in reply to chrissybell]

Thank you Chrissybell. My appointment was at 11am. I saw a couple of ladies whilst I was waiting. I did arrive nearly an hour early!!!

x

[danluc]

Marvelous! Like lifting 200 kg off your shoulders. I felt that way when my neuro diagnosed me, then felt very discouraged when the hematologist told me there was no evidence i had the syndrome because I had no major episodes. My strength returns when I go on this forum, or I read info from Dr. Hughes, and then realize all my symptoms are not all in my head. I have recently gone on holiday and now use a cane sometimes, due to balance and fatigue, and I decided that the cane also deserved a great vacation, so the cane is photographed on its own in a few shots. This was a fun project and made me realize that I make decisions on my health, and the syndrome does not define me. Cheers from New Brunswick, canada..

[crista1 in reply to danluc]

Hi Danluc. A huge weight as been lifted. This site is a god send. There have been times when I have also felt as if my symptoms were in my head, good to know their not. Glad your holiday went well. I won't let the syndrome define me either. Take care. Best Wishes from Manchester, England x

[ehc918]

My fear is that this diagnosis is not the cause of my issues. I've had so many diagnosis that I thought "aha!!!" Mutation of mthfr gene, elevated mercury levels, digestive issues, chronic viral infection, etc. I treat and then don't feel any better.

When I read the Hughes syndrome page on mild APS, it was another Aha!!! for me.

My dr ran the cardiolipin ab IgG, IgM, IgA and lupus anticoagulant. The cardiolipin IgM ab was positive at 25. The range here through my lab is less than 12 is negative, 12-20 is indeterminate, 21-80 is mild, and greater than 80 is high.

So I worry that maybe this isn't the issue, and I don't know how far to go with treatment or how long to give a particular therapy a chance. I currently take baby aspirin and Nattokinase.

What does prof Hughes say about timing?

[crista1]

Hi ehc918.

I'm sorry it has taken so long for you to get a diagnoses. Please talk to your doctors about the medication you are on and let them know if you feel something is not working for you. I will listen to what the Professor says in regards to treatment. Take care. x