HeatherSue
Join Date: March 2004
- Joined
- Sep 20, 2007
Thanks for the link! The doctor I just went to was listed on there as specializing in hematology, but she told me that she specializes in oncology and doesn't know much about "clotters", as she put it. My first doctor was on there as well (he was more informed, but still outdated), but there is a 3rd I hadn't heard of, but he specializes in oncology. I did an advanced search for doctors within 100 miles and a few more popped up. So, thank you for that link! I'll bookmark it for sure! I thought I had seen every site out there having to do with clotting disorders or autoimmune diseases!I am wondering if the muscle pain/fatigue is related to or totally independent of the APS. If it were the same muscle I would be concerned that it was a clot forming there. But in any case, you need to find a hemotologist who specializes in Hughs Syndrom right? Perhaps you could do a search for hemotologists in Michigan. Here is one site:
https://store.hematology.org/fah/fahhome.htm
There is a huge list of doctors and what they specialize in: For example:
Name: Judith C. Andersen, MD
Company: Karmanos Cancer Institute
Wayne State University
Department:
Address: 4100 John R., 4HWCRC
City: Detroit
State/Province: MI
Postal Code: 48201
Country: United States
Phone: (800) KAR-MANO Ext:
Specialties:
Int Med: Hematology
Clinical Interests:
Anemia
Bleeding Disorders
Thrombosis and Hemostasis/Blood Clotting
Transfusion Medicine
Myeloproliferative Disorders
Myelodysplastic Syndromes
Well in any case, you already know you have to be proactive and do your own research and talk to other people (like on your APS board you belong to).Just don't give up till you get what you want. Course then there is the insurance companies to deal with. I just watched Michael Moore's movie "Sicko". Perhaps you can go go Canada or Cuba or Europe for free help! Sad state of affairs in the USA.
OK well keep us informed! We love ya!!!
All of the new studies on APS list muscle pain and fatigue as symptoms. But, most of the doctors graduated from medical school when APS was a "new" disease. So, they don't know much.