why can I hear cows?

[charlieab]

Since my autoimmune nonsense started last year my hearing has been on a steep slope down into the sea. I struggle to hear people talking to me. But this morning for the first time I woke up to the sound of cows! Have the cows got louder, have the cows broken into the garden from the farm next door, or has some of my hearing come back? Can hearing ever get better?

Anyways, I wish those darn cows would pipe down!

[Julie_T]

Mmmm mine wear bells....

[MaryF Administrator]

The ears with regard to Hughes Syndrome/APS are very sensitive to micro clots, which can affect hearing at times in terms of hearing loss Manofmendip has a lot of experience with this. MaryF

[charlieab in reply to MaryF]

Thanks Mary. I do think that this might be part of teh answer to what has been happening to my hearing. I should be getting the results of the second set of APS tests today and might then know more. But will also get the polymerase III (scleroderma) result this week, so this might cast some light too (of the negative result type I hope!).

R

[Lure2]

Hi,

Do you mind if I ask you (again perhaps) what sort of anticoagulation drug you have? Also do you have a Doctor who knows autoimmun illnesses (like a Rheumatologist)?

Why I ask I know that you have had difficult years behind you and that you have had neurological symptoms not only from your hearing but also from doublevision etc.

I also had a lot of different neurological symptoms before I was properly anticoagulated. I still have a little tinnitus that is a symptom of HS/APS even if I am anticoagulated at a high INR. It did not go away but obsolutely became much better than before anticoagulation.

I had micro-emboli from brain and ear/eyes and they are not seen on a scan as they are too tiny. Few Doctors understand these curious circumstances but they are real.

I saw a balance-Expert and also ear-and eye-Doctors. Today I have a hearing aid ( my age also perhaps and parents) but HS/APS can make your bad hearing worse or be the cause of bad hearing.

Best wishes from Kerstin in Stockholm

[charlieab in reply to Lure2]

Hi Kirstin

Thanks for your reply. I now have a rheumatologist who seems to know his onions when it come to APS and connective tissue diseases, though his speciality is vasculitis. He has ordered the APS tests again and seems to think that APS fits with the symptoms and he suggested the possibility of an anticoagulant trial even if the APS tests remain negative. Though he also seesm to think that scleroderma could fit.

I remember what you wrote before about the vision and tinnitus and it has given me quite a bit of hope that there could be some light (albeit maybe blurred) at the end of the tunnel.

I hope to see the consultamt again soon. I asked him last time about taking low dose aspirin in the meantime and he said no. So Im sticking with that for now.

Thanks again. The info has been really useful and its also kind of reassuring to hear that others have got to grips with similar problms to mine.

Hope you doing ok.

Best wishes

R

[Lure2 in reply to charlieab]

Sounds like a good Doctor.

Did I understand that you are now on Aspirin or did he say no to that also.He believes also in sero-negative antibodies. Good thinking!

A trial of anticoagulation is very good. Hope he has read what prof Hughes says.

I assure you that you are not alone with these curious symptoms but very few of us can listen to cows though.

Have you read "Sticky Blood Explained" by Kay Thackray? Good book even for relatives and friends to understand our illness and how it is to live with it. Kay has got several neurological symptoms herself.

Kerstin

[charlieab in reply to Lure2]

Thanks, I hope so. He is grumpy as heck but that is kind of reassuring. Yes, he said no to aspirin, as said would muddy the water. Though not sure how he thought I was going to take it! And yes, as you deduced, he seems to believe in sero-neg APS.

Im definately going to read that book if I get a diagnosis. My problem atm is seeking out too much info I think and driving myself crazy with worry. Best book I should read now I think is a gripping who done it, but I cant get off the trail of what did it to my immune system!

thanks again.

R

[Lure2 in reply to charlieab]

I think you have got HS/APS. You talk of Livedo Reticularis. That is said to be a sign of HS/APS.

As Mary have told you ask for the other tests. She has had to go privatly to get all of them which is important.

You shall not be worried. It takes some time to have all tests done but you have got a Doctor who believes in sero-negative antibodies as several members have here from time to time.

What I think you should have (I do not know your other drugs) would perhaps be Aspirin as a first step to anticoagulation. It is not a anticoagulation drug but an antiplatelet drug but it helped me the first time with neurological symptoms before I started Warfarin. Aspirin will not interact with the bloodbtests for antibodies you are going to take.

You are on your way. A good Doctor and anticoagulation is the key to feel ok.

Kerstin

[charlieab in reply to Lure2]

Could well be APS I think. I think I have had all the standard APS tests done now - ACL, LA, and the different B2GP1 ones. I think that there is a prothrombin one but its not often done on account of low specicifity I think. So if its APS then its zero negative I think.

I think you are right about aspirin, I will raise the matter with teh consultant when I email him about another consultation. Hope he doesnt charge to answer emails!

Tbh if it turns out to be APS, then, despite knowing that it can be a very hard road, I know there is treatment and I also think there will be more effective treatmnts with say the work at UCL on Domain 1 in B2GP1 molecules (or whatever they are called).

Thanks again Kirsten. You guys on this site are a great support.

[charlieab]

unfortunately, the cow mystery has been solved and it wasnt a miraculous return to good hearing. The cows have been moved to the field nearest the house.

[Wittycjt in reply to charlieab]

Too funny🙃

[Manofmendip]

Hi

I totally agree with my two colleagues, Mary & Kerstin.

Dave

[charlieab in reply to Manofmendip]

Thanks Dave.

though does that mean you dont agree with Apsnotfabs herd of cows!

[Manofmendip in reply to charlieab]

I haven't seen that reply.

[charlieab]

made me chuckle. thanks. though looks like a giant wart hog at the front!