Sticky Blood-Hughes Syndrome Support

Finally Seeing Hematologist Thursday

So I am finally scheduled to see the Hematologist on Thursday. I have been waiting a long time for this. I plan to take my old blood work with me so he can see it and compare with any new blood work he does. Do any of you have any suggestions for questions I might ask or important information I should give to him? I am very nervous about this appointment because I feel as though he i my last resort. I truly believe a trial of an anticoagulant would be a good idea for me and to get me off this beta blocker and methocarbamol. I have been on these two meds for a few months now and they seem to be not working as well anymore as I am getting increased migraines again. At first I wasn't getting any but they are back and seem even worse in intensity now. I want to make the most of this appointment and don't want to forget any important questions or forget to tell him anything. I'm not even sure what all to ask. I really hate doctors and get a lot of anxiety when going to them because I feel like they just think I am crazy.

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Remember your the patient and without you they would not have a job!

Say what you have said above, bullet point your history, bullet point your questions. Start now, add to it when you think of something or get an idea from here.

Do not be intimidated, take someone with you if you can for support. Its really hard to say everything, when you are so scared of the outcome, so believe in yourself. If need be pretend we are all with you in the room.

Let us know how you get on. xxx

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Before the appointment, write out your medical history in bullet points, and also mention any other relatives with similar, this will help you on the day, as we all forget things we mean to say. MaryF

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Your not crazy. Remember to breathe. I know how you are feeling. I had a follow up appt today and felt I didn't do what I wanted although I had prepared. When I got to the office I had to redo paperwork for insurances and that always intimidates me because it brings all my history to the surface and I hate it. So the anxiety begins... good luck. I hope you do great. Let us know how you do.💪

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I agree with what my colleagues have advised you.

Dave

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Hi,

Today is Thursday. I live in Sweden so I am 6 hours before you if you live on the eastcoast of the US.

Please tell us how it did go for you today when you did see the Hematologist!

Best wishes from Kerstin in Stockholm

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In waiting room as we speak

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And?

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They drew 12 vials of blood and he is going to compare my bloodwork with what I had in the past. Told me he doesn't think I will need to be on a blood thinner other than a regular aspirin daily. But depending on what the bloodwork shows he thinks I might benefit from some shots of prednisone to suppress my immune system response. I just don't think doctors here in the states are comfortable with putting anyone on blood thinners unless there have been documented clotting events which I never had. But then I don't know what counts as a clotting event. Other than my miscarriages, and frequent migraines I haven't had a DVT that I know of and only recently did the doctor say he thought I had had a TIA but he can only confirm that based on symptoms and not tests. So I'm still kinda in a limbo situation where I don't know what the ultimate plan is going to be. The Hematologist is going to look at the bloodwork. But his own nurse said her levels for APS are pretty high and he only has her taking Aspirin as well. He did answer all of my questions and confirmed that I do have APS. He explained how it can cause no problems for a long time but then "flare up" because of it being autoimmune and then symptoms go away as fast as they came. But because I have been feeling so bad recently that maybe the prednisone would help me. I am satisfied for now with the answers I have received and hoping the tests will bring even more answers.

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So now you have to wait for the bloodtests.

Has this Hematologist seen other HS/APS-patients? He is talking of Prednisone but not so much about Warfarin or a trial of LMW Heparin.

Let us follow you please!

Kerstin in Stockholm

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I have reread a little from your erlier correspondence and by the symptoms etc I think you need Warfarin.

Even if the antibodies will be negative (it is common they are) please ask him if you could make a trial of LMW Heparin to see if your symptoms get better and you also feel much better.

Kerstin

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I did ask him if he thought that would be a good idea and he doesn't seem eager to try that. I think the protocol here in the US is just different than other places. I believe doctors here have to have more documented clotting events before they will go that route. I have read some articles that discuss the different views that doctors have on the use of warfarin etc. Not all doctors agree about when to use it in APS patients. For now I am going to have to trust my doctors.

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Hi.

I hope you have a Specialit who understands this illness and who would be willing to let you do a trial of LMW Heparin.

As we have said before, there are very few Doctors who understand that we have very thick blood and know HS/APS so the big issues for all of us is to find a Doctor who really have had patient-knowledge from different autoimmun illnesses (as they may go hand in hand like "cousins") and especially from HS/APS.

Kerstin

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Todd chick where are you located in the US? I agree withLlure, I think they are playing with fire. I had similar situation if any stroke symptoms should develop go to the ER immediately for help. Please keep us posted. May God be watching over you, Cindy in NJ

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I realized I never updated this. The Hematologist confirmed APS and says I am high risk for stroke but because I have not had a documented clotting event he cannot put me on anticoagulation and the neurologist agrees with him. Just taking Aspirin and my migraine meds at this point.

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Where in the USA 🇺🇸 are you?

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Ohio

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Some questions for you; as you have betablockers (or had) I wonder if you have got high bloodpressure? In that case it is important to remain on betablockers perhaps or some other drug for high bloodpressure. We should not have high bloodpressure with this illness!

if you have some sort of neurological symptoms I think you should read or buy "Sticky Blood Explained" by Kay Thackray. I have it in pocket here in Stockholm. A really good book to understand our illness. Also good for relatives to understand how we feel.

Also did you feel any better on baby-Aspirin? If your symptoms remain you should ask to try something stronger.

Best wishes from Kerstin in Stockholm

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Did you feel any better on Baby-Aspirin? Do you also have high bloodpressure?

Kerstin

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No I do not have high bp. Sorry i has taken me so long to respond. I have had so much going on and was just getting tired of everyone on here telling me I need to be on a trial of warfarin. Its not that I dont want to try that but I cant force my doctors to do it either. Its crazy to hear from the docs that I have APS and am hight risk for stroke but to not be put on anything for it since I havent had a clot. He basically only upgraded me to taking adult aspirin instead of baby asprin. I have since my last post been in ER twice and Urgent care once with severe intractable migraine. I have been in PT to try and ease my neck and head pain. My next appointment is in February where I will be exploring my options once again and getting a new referral to a rheumatologist as I now wake in pain daily. It takes me hours to get moving every day and I cant sleep at night. I so badly want to get back to the fitness level I was at a year ago. I am supposed to run a 5k in feb but will probably be walking it if at all.

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I may have asked you before; ...... are you positive to all the 3 antibodies incl Lupus Anticoagulant?

Do you have other neurological symptoms besides headache/migraine? May have asked you before but this is important? Hope you can read "Sticky blood Explained" by Kay Thackray I talked about earlier.

Myself I have just operated one eye so I have difficulties to read and that is why I ask again perhaps. It is as a fact important for you to get on a trial of Heparin to see the difference. The Neurologists do not "get" that we have too thick blood that makes us in such a bad shape.

I hope the new Rheuamtologist is a Specialist of autoimmun illnesses.

I hope you want to stay with us as we want to help you. Some of us experience the Warfarin like a "lifesaver" (like me) and therefor we nagging about it as we know it might help so much. Take care.

Kerstin in Stockholm

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I have primary APS I have not also been diagnosed with Lupus or any other secondary autoimmune disorder at this point. My bloodwork ruled out Lupus the last two times I saw the Hematologist. It was not only the neurologist but also the Hematologist that have made the decision to not put me on warfarin or heparin at this point. This is why I don’t post on here anymore. I get the same responses repeatedly every time I post about my health struggles. I understand that warfarin is a life saver for many but it is not an option for me at this point. There is apparently a different protocol or philosophy about it here in the states. At least where I live the doctors aren’t quick to offer that as an option and trust me I asked. I agree that this could help me to do a trial but I cant force my doctors to do it so therefore my hands are tied and I just don’t want to hear about it anymore. Maybe down the road I will get it. For now I am taking the step to see a new rheumatologist in hopes that they can help me with my health.

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Hi,

If you do not want to try to look for a Specialist of autoimmun illnesses who knows APS (they are not growing on trees) we can not force you. We can only telll you facts here.

The Diet is important but there are other things for some of us which are more important. I cannot understand why they will not let you try LMW Heparin and see how you feel on anticoagulation. You did not answer if you are triple positive incl Lupus Anticoagulanat. If so it might help you even more to try anticoagulation.

I want to wish you good luck in the future!

Kerstin in Stockholm

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