Not sure if numbness is from the APS or from issues with my neck

Hi everyone

I was diagnosed with APS in 2005. Prior to that they said I had 'probable' MS this was back in 1994-5 after I had an MS like episode that left me walking with a stick for months and not being able to walk and talk properly. I don't recall going for any scans. The Drs just made the housing install extra handrails on they stairs and the bars in the bathroom etc so I wouldn't get trapped in the bath again. (Looking back I believe this was my first stroke)

Since then I have had the remaining part of my thyroid removed. At the same time was diagnosed with APS. Had a few hospital stays of one or two days where migraine attacks with numbness have been so bad I couldn't move. I then had a confirmed cva which I was not aware of. But I was talking nonsense and got very confused at work. They admitted me for two days at that time. Heart surgery followed to repair a PFO and remove an atrial septal aneurysm that were apparently contributing to my TIAs.

Lately I have been having lots of numbness on my lest side mainly. Creeping numbness in my face is apparent even to my husband. He freaked out as he said my face was drooping on one side. I felt fine in myself apart from a numb face and arm.

I am currently going through physical therapy for my neck as I have three bulging disks and two of them are torn. I don't know if this sudden onset of numbness is a concern or if it's the disks in my neck

I did have a weird feeling of kind of being under water. It's very hard to describe. But that's how it felt. It was very disturbing and lasted maybe a half hour.

Has anyone else experienced this feeling and in your opinion do you think it's my neck. It maybe something else. Sick of going Drs and it seems it's something to me but nothing. Maybe I am going nuts after all.

13 Replies

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  • Hallo there,

    I do not know where you live. I live in Sweden and I have APS. I wonder if you are on any anticoagulation drug like Aspirin or warfarin?

    I recognize some of the symptoms you describe. I was operated for Hyperparatyreodose before I knew I had APS

    May I ask what is "PFO"? I have had very high bloodpressure and have also Pulmonary hypertension and leaking heartvalves. I am on warfarin with an INR over 3.0. I feel much better after I have been well anticoagulated. That is exstremely important to be anticoagulated and to have an APS-Specialist that understands what you tell him.

    Have you been able to read about APS? Very good books on Hughes Syndrome Foundation charity website. I prefer "Sticky Blood Explained" by Kay Thackray. (Sticky blood is the same as APS.)

    She has got APS herself and explains how it is to live with this illness and the different symptoms. It is a "must" for us with APS.

    Please stay on here!

    My very best wishes from Kerstin in Stockholm

  • We are not Medical trained here but we know this illness very well. I should say that the numbness could well be connected to APS and not the neck. Is the numbness on your left side also on the left side of your face? You can feel a lot of strange feelings when you get a small TIA. I can imagine you can feel like being under water.

    Kerstin

  • Hi you clearly have some mechanical issues going on with your neck which need attention, but also you need to check your your ongoing APS/ Hughes Syndrome issues with your main consultant, as you may need you blood to be checked for what level of medication you need anticoagulation wise. It is not uncommon to have and MS diagnosis prior to Hughes Syndrome/APS. It is important that you get help for this, write down your symptoms and your history in bullet points, to make best use of any appointment. Let us know how you get on. MaryF

  • I have been on coumadin/warfarin since 2005. Currently on 10 mgs a day sometimes I have to add 1mg to give my INR a nudge. Lately it has been all over the place and there has been no apparent reason for the swings. I was naughty about a month ago and had some extra salads and I was drinking vegetable juice. I had a craving for it. I felt off so I went in for a spot check on my inr thinking it was probably low because of the extra vitamin k. It came back at 16.5. I took emergency vitamin k pills and it came back down over a few days. Nobody knows why it did it.

    PFO is a hole in the heart which is a congenital defect. I always complained about palpitations from my teens and nobody could find anything wrong. I was almost 40 and put into ICU with a migraine. Then they found the hole and said I probably had a stroke and it was caused by the hole. So that snowballed from there.

    I take lots of medication everyday. This new numbness underwater thing. Not sure if it is something with the APS or my neck or what. I also have sjorgrens ulcerative colitis, which is fun. Fibromyalgia and my thyroid mess. So many things and this is the first time I have been a bit worried about what is going on. It seems as though everything is deliberate. Blinking and breathing included. I am not supposed to be aware of it. I am english from cheshire. But I live in Kansas USA. Medical stuff is weird here and expensive. I have my general Dr and a rheumatologist. I did have a cardiologist but I moved and changed insurance so he is no more.

  • You may need to find a new doc and if you are now stable with your diet in terms of your INR on Warfarin, you may need to try a different anticoagulant, all the best. MaryF

  • Thank you Mary. I will ask my Dr when I go in again. If my inr keeps waiving around it might be time for a change.

  • Good that you are anticoagulated!

    Does your Rheumatologist understand your different symptoms included the whole in your heart?

    Look at apsaction.org ...... doctors that know APS in different countries. Try to get an APS-Specialist!

    Please stay on here. There are so many members with a lot of help to give. Hope someone from Kansas. We try to help eachother.

    Kerstin

  • Hi

    I have read this thread with interest and I agree with what my colleagues Mary & Kerstin have advised you.

    Dave

  • I am going to physical therapy today. I am going to ask my pt tech if it might be the cause. As its not only my face and tongue and lips. It's my arm and my leg as well. I think it's more than likely the nerves being trapped as it sometimes goes off a little bit and then comes back worse. I will let you know what they say. Just in case it warrants further investigation

  • I am going to physical therapy today. I am going to ask my pt tech if it might be the cause. As its not only my face and tongue and lips. It's my arm and my leg as well. I think it's more than likely the nerves being trapped as it sometimes goes off a little bit and then comes back worse. I will let you know what they say. Just in case it warrants further investigation

  • I am going to physical therapy today. I am going to ask my pt tech if it might be the cause. As its not only my face and tongue and lips. It's my arm and my leg as well. I think it's more than likely the nerves being trapped as it sometimes goes off a little bit and then comes back worse. I will let you know what they say. Just in case it warrants further investigation

  • Good luck! I am in West Virginia so, I can't offer any doctor recomendations. I was diagnosed by John Winkelmann who practises in Cinn. and that bit of Northern Kentucky across the riiver from Cinncy.

    I had multiple TIA/s mini strokes leading up to my diagnosis. I always tried to describe that indescribable feeling as a "panic attack." I I felt and just "knew" something was horribly wrong and I was terrified. I am a doctor's daughter, so I would always give myself these mini "stroke tests:" I would balance on one foot, then the other, close my eyes and touch my nose with my finger --and I always passed my tests so I tried to discount these "panic attacks" as some deep emotional disturbance from some hidden conflict that I had consciously not understood yet.

    I finally went to the ER after I had one of these attacks in the presence of my teen age daughter, who rightly realized I was having a stroke and got me to the hospital.

    And, it turns out, this "FAST": campaign in the US ("Face, Aspect, Speech, Time" has its origins in the realization that patients often can not diagnose their own strokes. Their brains lie to themselves. For all I know I was NOT balancing on one leg, then the other and I was NOT touching my finger to my nose. My brain was so terrifeid of the implications of losing congtrol that it lied to itself. Which is why it is crucial that others diagnose the early signs in stroke patients.

  • Hmm that's an interesting point. As I have done the same thing myself. Gone to the mirror and pulled faces and done the same things you describe. The time I was hospitalised I was taken to hospital by my hubby and a work colleague (who said I was babbling nonsense). I went to basically shut them up and prove them wrong. I felt it was an episode or maybe a small TIA and all was well. I actually felt quite smug as I thought I passed the tests. No weakness here. Then they came back in as I was gathering my things together and told me I wasnt going anywhere as I had a stroke. I burst into tears. Scared, confused I told them they were wrong and I was ok. I was admitted. Several hours later the weakness started to descend. There is evidence on my MRIs of past issues and a large area of calcification where they said it was probably another stroke from some time ago. I believe that maybe the one that I put down to an MS episode 20 years ago. I had to work on walking and talking for 3-4 months before I could manage without a walking stick. At 27 a stroke was not even on the cards as the cause. There are lots of white spots on my MRIs which nothing has been said about them so I assume they are normal. They have only ever said about whatever it is they have been looking for at that particular time. Never had a routine mri for investigative purposes. Always had them for a specific reason. Hoping this time it's nerve related and not grey matter related

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