for Madwolf, Suejay & AC77

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 20, 2003.

  1. tansy

    tansy New Member

    I have just posted a message regarding recent heart flutterings (best way I can think of describing them) which seem to have surfaced since starting ZMA.

    It's under my earlier post "for mikie re ZMA".

    Mikie thought I should see whether any of you think there's a connection.

    Jellybean's gems of knowledge indicate that despite being throbocytopenic I should look into hypercoagualtion. Blood tests done in early stages showed poor circulation, it's still not good now.

    Also e.m.g.s showed abnormalities on use only, thought in part to be due to inflammation and perfusion. The muscles on my dominant side were worse. Now my most used muscles are losing bulk and strength which is worrying because they are naturally the ones I need most.

    Is any, or all, of this connected?

    Any ideas on this would be most welcome.



  2. tansy

    tansy New Member

    Actually you have been very helpful.

    Will not use ZMA for a few days, shame cos it made the ambien more effective.

    Bells rang over the thoracic outlet syndrome. Had already planned to get my brother to arrange some tests for me regarding neck, base of brain (wondered about chiari)and thoracic area. He's a consultant in Nuclear Medicine. Was supposed to be referred to a neurophysiologist but the haematologist who agreed to this failed to do so. Based on this info alone I can get my GP to chase it up, then I'll make a phone call too.

    Legs bad but arms so much worse so there's clearly somethng going on in this area. My spine and neck are very weak and painful, cannot twist sideways at all now so it's time they that looked into as well.

    Dispite having a very adaptable attitude to this DD and life generally my body is quite the opposite. Worth getting adrenals checked out, would make sense of some of this. Haven't lost weight and have had sleep problems for 22 years now so don't think thyroid is overactive

    Hypercoagulation theory really makes sense now that I've started to get my loopy brain around it all. My history makes it all the more relevant. But will need to go carefully here since I'm already thrombocytopenic and have been so for 20 years. I was on ancrod/arvin (cardiac capheter), heparin and warfarin thirty years ago and then warfarin again after the birth of my son. I don't relish the idea of heparin alongside the thrombcytopenia.

    But it does highlight the need to get rid of the critters still in my body, whichever ones they may be.

    I realise how much you have contributed to this board. You, Ace, and Suejay, have all been so generous with your time; doing this when ill yourselves is remarkable.


    [This Message was Edited on 05/20/2003]
    [This Message was Edited on 05/20/2003]
  3. tansy

    tansy New Member

    Looked up thoracic outlet syndrome. Groaned at first - not another controversial problem! Looks as though it might well be contributing though. Access to physios dodgy now due to how local NHS primary care and local hospital trusts are (mis)functioning, but will see if GP thinks community physio can help me.

    I know it's not the whole problem but I can do something about this. Thanks.

    Now back to hypercoagulation. You know how it is with our brains, glued up, or everything seems to be going round in circles then "bingo" a bell rings and some things start to fit together.

    My brother is in nuclear medicine. He actually carried out the spect scans on patients with CFS in a research project at The Institute of Nuclear Medicine in London and described all the findings to me. He clearly could not be involved in the interpretation for the research though.

    Anyway he always insists their findings were due to blood flow problems in the brain. If hypercoagulation is a serious problem then would this be the reason for the research findings?

    If you think it worthwhile I can ask what his opinion is. He works at another London hospital now, is highly regarded by his peers, though not by his hospital's management - for all the right reasons I'm glad to say..