I was diagnosed 10 years ago after a blood clot in my carotid artery. While recovering I spent my time on the computer since I couldn’t do much else. I researched possible reasons why a healthy 44 yr old can have a blood clot. I discovered clotting disorders of many kinds, including APS. When I asked the neurologist to test me for these conditions, he patted my hand and told me that the internet turns people into hypochondriacs. Finally got my gp to do the tests, and found that I have APS. Long story but I’ve seen many drs in the last 10 yrs and none of them have been helpful. I was on Coumadin for 10 yrs and had daily nausea the whole time and often had nosebleeds. Also could not control my inr, which ranged from 2.0 to 6.5 no matter what I ate. The drs kept telling me I have to take Coumadin or I will die. When I insisted, my rheumatologist said that if I stopped, he would not continue to be my dr. I tried to talk to him about Heparin or Xarelta, and he said they are not approved by FDA for APS. I said neither is Coumadin and of course he became angry. Also had to fire my gp, he just kept repeating “aps does not cause those symptoms” and urging me to see a psychiatrist. All of the drs I’ve seen are control freaks who become angry if I ask questions or want to make my own decisions about my own body. So… here I am, I stopped taking Coumadin, and I don’t vomit in public any more but I am very very sick. Brain fog, memory loss, joint and muscle pain, headache, and exhaustion. I am hanging by a thread at work, and if I lose my job I will lose my health insurance and my home. At least my car is paid for so I will have somewhere to sleep. I have no doctor. I need to find another rheumatologist, and I am overwhelmed by the task. I am hoping that someone here can help me. I live in northern CA, 100 mi ne of San Francisco. Of course I would travel a long way for a dr who could help. I need a dr who knows about aps, because over the last 10 yrs I have never seen a dr who knows anything about it. The drs I’ve seen are very resistant to being informed by a mere mortal like me. Has anybody here had a good experience with a dr in Northern CA?
Desperate, Can You Help Me? - Hughes Syndrome A...
Desperate, Can You Help Me?
Sorry to hear of your problems with docs. I went through same thing - while in hospital they sent in a psychologist to assess whether my symptoms were psychologically caused! This even though I was diagnosed with Aps!! Fired three neurologists so far and one rheumatologist and still working on assembling a team that knows about aps. Hard to find doctors that are familiar! I'm on East Coast. Good luck and don' give up the search! Hopefully somebody wil respond with useful recommendations.
I wish I could come to London but this would be very expensive and I don't have the money. I did taper off the Coumadin gradually over 2 weeks but had no help since my former rheumy will not return my calls. I cannot vomit daily for the rest of my life, and I had to decide to take my chances, because I am exhausted. I am without anticoagulation now and his terrifies me. I am taking 2 full strength aspirin a day but I know this is not enough because it does nothing to control my symptoms. If you could find the name of a dr in San Francisco I would be grateful.
Hi there, and welcome.. you are not the first and you will not be the last to have such dire medical treatment, due to severe medical ignorance and a reluctance to update skills.. it make me sad that so often neurologists appear to come up in people's histories, with this sort of attitude, although some do not. Other members on here will come on and assist you from your locality.. in the mean time.. Please look at the names in the USA on this list and make some phone calls: apsaction.org/
You will feel better if you can get yourself sorted and also some local peer support, then you can write a firm but clear letter back to your neurologist and any others, once you have your correct and modern care in place. All the best. Mary F x
Thank you for your suggestion. I checked out APS Action, the nearest dr to me would be the one in Salt Lake City 650 mi away but he is an ob/gyn. The next closest are the ones in Texas, about 1800 mi from me. I saw a hematologist at Stanford because her office staff said she was an expert on APS. When I arrived for my appointment (which took 3 months to get) I found that she had never heard of APS. She said to me, in a slightly hysterical tone, "what are you doing HERE?" The Dr who told me that he would not be my dr anymore if I stopped taking Coumadin came from the APS Foundation website list of drs. This is why I am hoping that someone will share with me the name of a dr that is knowledgeable and helpful with them. I do not have any more stamina to keep going to unhelpful drs. Letters to drs--oh yeah I wrote to the rheumy and told him that he needs to find a job where his frequent failures do not harm people. I referred him to the fabulous new Hughes Syndrome website, but I don't believe t will do any good. But it did make me feel better.
Oh honey you story is so familiar but i agree with APS you are taking a risk, I can understand your exhaustion.
Not only do we feel very ill we have to battle with our consultants & Gps, you must find another Gp as soon as possible.
Stay on this site it is of great help to many, plus you can take notes from others.
You must be feeling awful & to have to drag yourself to work must be so hard.
Take care. Jillymo xx
Hi Bell
Your story is so traumatic.
Somehow you need to find a Dr. who will prescribe Low Molecular Weight Heparin for you, as a matter of urgency.
If you could get to London to see Prof Hughes I'm sure that he would help you, as he has helped many of us on this forum.
Good luck and best wishes.
Dave
I know Prof Hughes would help me but I don't have the money to get there. Thank you for your kind words, I've been feeling very alone and am overwhelmed by the support I received here.
Well, puish for LMWH Bell.
Is it called Lovenox in the States?
Dave xx
Yes I will push for this. In US I think Lovenox is a brand name for low-molecular weight heparin, and I think there are other brands, but this one seems to be commonly used. I have used it before when my inr was too low, which was a lot. so I asked my rheumy why don't I stop trying to make coumadin work for me and just go with the lovenox? Like clockwork he was adamantly opposed to anything I suggested.
Hi Bell.
Go for it.
I would never go back on Warfarin now I'm on LMWH, it's a no brainer.
Fell better, no blood tests, eat and drink what you like, one 'fit and forget' injection every morning.
Dave xx
AND no more vomiting in public!!!!! Also much easier to travel.
Spot on. xx
Hi Bell990, I'm sure with help from others on here, you'll be able to find a helpful, knowledgeable doc somewhere within reasonable reach of where you are.
In the meantime though, you might like to research nattokinase. It's a natural, plant-based blood thinner and clot buster. It was recommended by my naturopathic doctor (i.e. also a qualified doctor). I'm thinking of trying it myself when I've (hopefully) stabilised some other, rather more urgent, conditions. I can't vouch for it, it's just on my list of things to try in due course rather than toxic evil drugs. And it might just tide you over while you're looking for a good doc.
Good luck. And if you do try nattokinase I'd be very interested to hear how you get on. All the best.
Hi,
I take nattokinase. Have for over 5 years now and started after a small stroke and countless tia's. They tried me on heparin for 3 months but found I could not take it. I also have low factor VIII levels, so couldn't take warfarin either. My hematologist told me nothing could be done and to get my will in order! I am in such sympathy here for Bell, her story is all too common and I went through 8 neurologists myself. And didn't know what to do with this situation as was having tia's constantly. A friend told me about a naturopath in Florida (I'm in Michigan); I called him and he recommended nattokinase. Important! : Pharmaceutical grade only. One must watch their vitamin K intake while taking it. I've done great on it! Yes, a few tia's in the past 5 plus years, maybe 1 or 2 a year. That sure beats apx. 6 avg. monthly! No side effects. Of course, not recommended for everyone, but in my case it has been a life saver.
Leigha
Sorry to hear what a difficult time you are having. I do understand how frightening it is to be so ill and without safe care. Obviously getting to a suitable doctor is a priority. I agree with others that it is important to stay on some. anticoagulation. One thought is to look up natural anti coagulants and take what seems viable. Fish oils chilli peppers and garlic. can make a difference. Also you can download. information. leaflets. from. the Hughes Syndrome Foundation site. and take it with you to. any doctors you see. I would recommend. putting your history and concerns in writing. It can help you to be sure you get across what you need to say . I also think that some doctors will take in information in writing more easily . As we know they are not all good listeners. There are many of us on here who are on LMW heparin . Many of us feel much better on it than on warfarin. You can ask for a precautionary therapeutic dose of heparin to cover you till your longer term treatment is decided. We found that the phrase 'precautionary ' brought a much better response. It helps them to understand that failure to treat is a risk. You can also ask for a three week trial. This is used used by doctor in London to establish whether it is a suitable treatment . I understand that insurers in America will pay for LMW heparin but you would need to check this. If that is the case this could also be persuasive to doctors If you were prepared to go back on warfarin in the short term you could get medication to prevent the nausea anti emetic. drugs are used in other contexts. If you did decide to go back on it you need to be on injections until your INR. is in the therapeutic range. When you first start on warfarinit causes a hyper coaguable state until you have built up enough in your system to become effective as an anticoagulant. This is written up with advice about transition onto warfarin on medical sites.
You can get the right care with help and support. Please keep in touch and tell us about your progress. very best wishes Ann
Thank you for your input, this is excellent and helpful advice. I tried several kinds of antinausea medicine and all of them made me so sleepy I could not function. I am trying to stay employed and on my feet, I am in too much pain to sleep on the sidewalk. Another problem I have had with many drs--they want to know why I want to keep my job and I don't think they would ask a man this question. I am having trouble getting a dr onboard with my goal of keeping my job.
I found a most helpful advisor and advocate from a ( to me) unlikely source: my insurance company! As long as you are insured, your company is going to fight like h*** to keep you our of an expensive hospital stay.
Check if your insurer has a nurse helpline, or refers clients to InfoMed ( which is where my nurse advisor works). In this case, your interests and those of your insurer align. Heprin is cheaper then treating a DVT, a PE, MCI or TIA ( how that for an alphabet soup? Makes me sound so in- the-know doesn't it?)
Good luck and let us know what( we hope, we hope, we hope!) progress is made.
Gina ( in West Virginia.)
Dr Kathy Hassell, Professor of Hematology and clotting expert at the University of Colrado in Denver, CO is great which is not close but closer than London. She would not prescribe the LMW heparin (she is a consuktant so doesnt really write prescriptions for many patients) but I am sure she would write a long consultation explaining that APS DOES cause the symptoms you have and that LMW heparin is a long term alternative. She is my MD and I am on lovenox long term (bc warfarin doesnt work as well for me) and plavix and have never had a thrombosis. I had very severe migraines, trouble thinking, etc. These symptoms all have resolved on lovenox and plavix. You would need to find a good local internist which should be easy to do by checkin online ratings and calling the practice and asking the nurses who may be a good match for you. Share your bad experiences, etc. Ask friends, etc for recs.
If your are near the No. bay area or Sacto. I have a Hemo in each place.
Both wonderful to and for me.
Vallejo - Dr Tatjana Koleveska
Sacto - Dr Lisa Law - Roseville
For better info please contact me directly
Steve
Thank you thank you thank you I sincerely believe that you just saved my life. I will contact you for more info.
Thank you this is helpful. I sent some messages and am waiting for responses.
I know how frustrating the doctor search can be. When I finally found a dr in Texas that validated all my symptoms and diagnosis I wanted to kiss him. My APS is treated with Aspirin and plaquenil. To me the plaquenil is what gave me my life back. I have energy again. My brain can think! I don't feel like I'm going crazy. He wanted me to go on plavix but I decided to stay with aspirin since its working. I also tested positive for the MTHFR gene mutation which my dr said is common in APS so now I am on metanx. Next month I switch to folbic (based on cost savings.) Again, I felt the immediate benefit from the B's. Another drug i just started is alpha lipoic acid.OTC. Don't know what it will do yet. Dr said its a anti-inflammatory. Good luck in your search. Once you hook the right doctor you will find your life again.
Thank you for doing this research for me. The dr who told me that he would not be my dr anymore if I stopped taking coumadin came from the APS Foundation website list of doctors. I am not going to ever see a dr again unless somebody with aps tells me directly that they were treated appropriately and competently. Today I realized this will probably never happen. I do not have the stamina to keep going to see drs who are unhelpful at best. I know I can take care of myself better than any dr ever has. This decision is so liberating, I did not realize how stressful it has been to try to deal with the medical community until I decided not to do it anymore. I feel better already because I have let go of this stress. I am going to try nattokinase and foods that thin the blood, and I am going to live free of the stress that comes from fighting for care from the medical community. I feel very positive about this.
Hello, I live in central California and I travel to Sacramento every few months to see my Rheumatologist. I'm on 81mg aspirin 2 times a day for APS. I've never had a blood clot therefore he wants to keep me on aspirin. However, he has told me that there are other treatments out there if I were to develop a more severe case of APS. God willing that doesn't happen. The great thing about it is he works EVERY DAY! He holds regular hours during the week and half days on the weekends. It's such a huge help for those who cannot see him during the week. I don't know if Sacramento is too far for you. I drive 1.5 hours to see him. His name is Dr. Kenneth Wiesner. If you'd like his address and phone number, let me know. I really hope this helps. Best of luck to you.
Adriana
Thank you for this information. Your dr gets excellent reviews, he sounds like a great dr. But his office staff gruffly told me that he is not taking new patients. I tried to talkher into it but she was mean as a snake and twice as scary. I intend to call again in a few weeks and see if I get a different answer.
Ok that seems a little mean-spirited
Thank you for looking this up for me. The doctor who told me that he would not be my dr if I stopped taking Coumadin came from this list. he knew nothing about APS, and refused to let me tell him anything. I'm not going with any more lists or websites because this hasn't worked for me in the past. If somebody can recommend an APS dr near me based on personal experience I would try that dr but right now I've decided that I don't need a dr, I need to take care of myself. I am going to take nattokinase, and stop battling with drs. My limited energy has been sapped by the stress that the medical profession has caused me, and I already feel better since I decided not to do it any more.
I know it's been 3 years, but did you ever find a doctor? I am west of Santa Rosa, CA and am newly diagnosed and looking for one now. It is proving to be a pain! I may have found someone in Healdsburg. I am calling this morning... Best, Mikki
Did anyone ever respond about a knowledgable doctor in the kaiser system, preferably California. If not, a serious expert in the U.S.? I've checked the various weblinks offered and those appear to lead to dead ends. Finally, does anyone know what would be required to have a consult from Dr. Hughes. We can get ourselves to the UK. Thank you for any advice. Seems we have a strong family history (Genetic) that may manifest in younger members of the family with symptoms but no positive APL tests and manifest in older members of the family with strokes and even death
Hi Kjinnett,
If you have been tested for APS (Hughes Syndrome or Sticky Blood) I think you should put your own new question on here as you will have more answers that way. Good Luck!
Best wishes from Kerstin in Stockholm
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