Thank God for this website!

[designer16]

I want to thank everyone who helped me. I am in the California, USA. I was not to find a dr. because after testing.positive for APS, I started testing negative. Every physician I saw said I no longer had APS. They sort of gave me the MS diagnosis, even though my symptoms were not really MS.

2 weeks ago I went & saw Prof. Khasmashta. The best gift I gave myself. He was wonderful. He said I have Hughes with MS like symptoms. I have been taken Clexane 80mg. The headaches are gone for the most part. The stiffness in my legs is 80% gone. I exercising now. I walk better with the walker. I am looking forward to the day I can walk normal.

Thanks again to all who supported me & advised me to go to London.

Designer16

[MaryF Administrator]

Good for you, I could not be more pleased for you, keep us posted as to your continuing progress.. hope you enjoyed the UK! Mary F x

[Manofmendip]

I second Mary, great news.

Best wishes and good luck.

Dave

[iwantsimple]

Where in California do you live? I'm in California, as well. I live in Fresno, and I was able to get a diagnosis and good treatment by going to the UCSF Medical Center in San Francisco and following up with the UCSF Center here in Fresno. If you aren't too far, I can give you some names of some doctors.

[designer16 in reply to iwantsimple]

My problem was after testing positive 17 years ago, I now test negative. All the doctors I saw said it had went away because I hadn't had any recent blood clots. I would like the names. I live 50 miles south of San Francisco, in Palo Alto. Designer16

[daisyd]

Really pleased for you xx

[Annslack]

So pleased for you. Its great to get answers from someone who understands this condition so well. So glad you are feeling better. Please let us know about the improvements as they continue. I think you will also notice benefits from feeling more peace of mind through having a diagnosis and a doctor you trust. all the very best Ann

[Hidden]

Excellent for you! I'm curious why the Clexane 80mg was chosen over warfarin. Thank you. HughesMember

[mhokeness]

I'm glad you have started treatment. I am in California also. If you would like the name of an excellent rheumotologist here in Los Gatos, let me know.

[SueLovett]

Delighted you got to see the lovely Munther Khamashta.

I think he has literally saved lives of a lot of our members. He is a real gentleman and I for one am so grateful I found him.

Let us know how you do

Xx

[k7pbx]

I am in the Sacto area but have a wonderful Dr. who is in Vallejo.

She was the one to diagnose me 10 years ago.

[designer16]

For those who were interested. I was dx 18 years ago became pregnant took haparin . Delivered my baby gril & stopped heparin. Moved to northern California. They repeated the blood test & it was negative. It has been repeated several time & has come up negative. The doctors said the APS was gone. I was having MS like symptoms but the clinical findings were not consistent with MS. I was so frustrated & could not find anyone to treat me for APS with a neg. blood test. That is why I went to London. I am so happy I did. Designer16

[MaryF Administrator in reply to designer16]

Hopefully the letters written from London Bridge after your epic journey for correct management of you condition will explain that APS DOES NOT go away. Good on you, some fine tuning of medical ignorance! Mary F x

[MJLS]

Glad to hear your feeling better x

[GinaD]

Gee. If some docs thought your APLS had spontaneously vanished, then why didn't they try to explain why it went away?

[Hidden]

I wish there was a "like" button on here! Great news.