Recently Diagnosed! Having some weird symptoms? Can anyone help?

Hi! Thanks for taking the time to have a look at my question. Cut a long story short I was recently diagnosed with APS after a lot of miscarriages so I'm currently awaiting hematologist appointment on Monday! So I'm a tad anxious. But what really bugging me is since September I've had twitching! Like twitching in my calves mainly but have been also in my foot, bum cheeks, back of thighs and the odd time in my thumb. Also to this I have a new symptom of a 'warm sensation' a sort of if I was near a warm radiator that seems to come and go within a few seconds and can happen a few times a day. This is really scaring me as I have turned to Google and now I've totally convinced myself I am doomed. Has anyone had these sort of symptoms. Had blood work done and all was fine except slightly lower B12 but I've taken strong B12 tablets and I've no relief. I'm literally an emotional mess at the moment and I can't keep the fake smile on my face any longer the worry is eating away at me.

Sorry for waffling!

Leanne xx

15 Replies

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  • Hi and welcome, where are you located? I am glad you are seeing a Haematologist, I hope they are well read regarding the condition! All sorts of symptoms can be problematic with Hughes Syndrome/APS which is why your Haematologist will work out the best sort of medication for your own personal case. MaryF

  • Hi Mary,

    Thanks for your reply. I'm based in the west midlands UK. Touch wood so far miscarriages have been my only problem. But now these twitches and sensations have took my mind completely over. I just can't understand what's wrong with me. X

  • Sorry to hear about your miscarriages. Please do have a really good look around the charity website, this is one link from it: hughes-syndrome.org/self-he...

    MaryF

  • Hi and Welcome,

    There are several "sensations" with this illness. Sometimes you think you are quite "mad" and you also get afraid. My eyes jumped up and down when I later learned I had a TIA.

    I had the oppsite; I had a feeling like going through "coldness". It happened before I was anticoagulated (all these things happended before I was anticogulated) and it happened sometimes twice a day. It lasted a minute or a little more. I got used to it but I have asked here if someone else had this feeling but I have not heard of anyone else.

    Hope you understand that it is good that you have got a diagnose. This APS never goes away but it is treatable with the right anticoagulation. Try to learn as much as you can.

    Best wishes from Kerstin in Stockholm

  • Fear not Leanness what you describe is not unusual with this illness and does improve with treatment. I have experienced similar symptoms but they have subsided since being on Clexane.

    As Mary says there is a lot of information on the Hughes Foundation website. Remember you are not on your own so keep in touch and let us know how you get on with your appointment xxx

  • Your comment about suddenly standing beside an imaginary radiator causes me to wonder if you might be entering peri-menopause and you are having hot flashes.

    You have been given good advice in the earlier posts. Read and learn.

    And you might take some of that stress energy and channel it into making a bullet point list of symptoms to present to your doctor. Channeling stress into list making is a technique I learned from my cousin, who dealt with the number of medical issues all her life.

    Good luck! And let us know how it all turns out.

    Gina

  • So very sorry about your miscarriages Leanne. I know that pain very well. :( With regard to "twitching", I have a lot of that but mostly in my legs and feet, as well as the backs of my thighs...esp. after sitting too long, or in a cramped position. I can feel the veins in my body twitch, and what tends to help is doing a lot of ankle raises/rotations, and making sure to get up and move about a lot every ten min or so. As to temperature changes, I can go from hot to freezing cold and back to hot, but I find most of the time I am freezing cold while others are warm. It can be 70 degrees Farenheit in my home, and yet my fingernails will be blue. i have always chalked that up to the poor circulation/APS issue as well as thyroid problems. Make sure to keep a journal of all of your symptoms and what time of day you experience them...where you are, what you have eaten, etc and bring it to your specialist so that you don;t leave anything out. Hopefully they will be able to help pinpoint when these symptoms are appearing. Many folks on here seem to feel some relief of crazy symptoms once they are properly anti-coagulated. Hang in there!

  • Tbh I think all my symptoms are weird and they pretty much come and go at random. I get hot all the time, not just warm but sweat dripping from my face hot. I'm post menopausal so it's not hot flushes and it's pretty much constant. I developed vertigo a few weeks ago and it's really getting on my wick, it makes me feel sick and I can't drive because I can't focus, so my son has to take me everywhere. Sometimes the little things affect you more than the big things. I find exercise helps with random pains and twitches in the legs. I used to get terrible stabbing pains in my thighs but exercise has got rid of them.

  • Hi there,

    When I read your answer I wonder if you are properly anticoagulated as you have Vertigo and you can not drive because you can not focus. I had that before I had started Warfarin and sad to say i sold my car before I knew I had microembolies and Warfarin took away the neurological symptoms I had lots of. Hope you have an APS-Specialist!

    Best wishes from Kerstin in Stockholm

  • I believe I'm correctly coagulated, the vertigo is a recent development and have never had it before this. I had a cold, not a bad one but it wouldn't go and my Gp believes the Vertigo is an inner ear problem, but we'll see. I've been being investigated for light headedness for over a year now, with all sorts of tests by the falls clinic.

    No I don't have an aps specialist although I did recently ask to see a Rheumatologist but the appointment was very odd, he was only interested in my knee as I was limping and had no interest in my Aps even though that was why I was referred.

  • Vertigo is a middle or inner-ear-problem and I had a specialist of Balance-issues (the best in Sweden actually) . He told me it was caused by microembolies as I had also a leftsided otolitdamage after my TIA. After I started Warfarin it disappeared. This is a symptom of neurological APS.

    That is why you should see an APS-Doctor as it is most likely caused by APS and you may need to be properly anticoagulated. I selftest with an INR of 3.2 - 3.8. It is important (if you have Warfarin) that the INR is STABLE to be protected from further clots and embolies.

    Look for another Rheumatologist who is interested in something else than your knee! Does not sound as he was a Specialist. I guess he did not want to show you that he did not know what APS is. Doctors are only human beeings.

    Kerstin

  • I must admit I try not to see every new problem as being Aps related. Vertigo has many causes so it could just be vertigo and not a new symptom of Aps. I don't have ear ache, loss of hearing or tinnitus, it just feels as though the world is spinning around me and I can't focus my eyes. I'm not giving up driving but nor am I going to take risks, if I can't focus my eyes, I can't drive that day. I do worry when my head is involved though as having had 2 strokes I definitely don't want another. My Inr is stable and due to be tested again in about a week, I also have a Doppler test booked in for the 29th, as part of the ongoing obsession with my heart. I had an echo a few weeks ago which was completely clear, hopefully the Doppler will be too and they'll move on to investigate the things that bother me rather than obsessing about the things that don't. My Gp tries very hard to help and has never been dismissive about any of my symptoms to be fair but he also understands why I want to remain as medication free as possible.

  • I think there are a lot of different symptoms going on with APS.....I've had twitching, but relate that to being tired all the time....or stress. Just an example, when my 16 yr old son is being extra sassy........my eye twitches....lol. Good luck with your appointment Monday. The people here in the support group when I was first diagnosed were so helpful........ at least I think it's the same group that was originally thru Yahoo. Check out the website as Mary says. Good info!! :)-Mindi

  • lol at the sassy teenager. My eye also twitches when I am particularly annoyed. Usually it's an outward indication for people to scatter and leave me alone. I never put this down to a symptom, rather me being unstable and it being a safe measure for others lol. No memory of things I need and I remember stuff I don't need. Old age or APS? I will be 50 next year. This forgetfulness is scary

  • I had full on jerks on my right arm and right leg. When I was laying down I could be described as flopping like a fish on dry land. It seemed to calm down more after I started and increased the Topamax after finding out I had seizures probably caused from blood clot. But I was also still working on getting on proper dose of warfarin. I think it was the Topamax. I still tremor when I have pain or am uncomfortable about something physically or mentally, but nothing I cannot control when I concentrate on it.

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