gressier

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  • gressier
    September 25, 2016 at 2:32 am

    Hi, I’m feeling confused and anxious and need to touch base with someone who may be able to give me more advice from a patient’s viewpoint. I am struggling to find a neurologist who will accept that my new alarming cardio/ swinging blood pressure/vertigo symptoms may be related to my CIDP. I saw the second neurologist last week who brushed off all my questions about the possible connection and argued that it was ‘extremely unlikely’ and basically dismissed my worsening symptoms as being my cardiologist’s problem ? The cardiologist on the other hand (my second one) seems to be unfamiliar (and disinterested) in investigating the possible link too. In the meantime, I am wearing a event monitor until
    next Wednesday but am unhappy with the care I am receiving but cannot afford to keep
    trialling new specialists. I think the neurologists in particular are a little dismissive of my disease because I am ‘functional’ and unlike the majority of their other CIDP patients, can still walk without obvious signs of disability. I am getting to the point that I am becoming scared to go to sleep as most of my palpitations, low/high blood pressure, dizziness, sweats etc occur when I am laying down. Stress may be a factor but I believe it is a product and not the cause. Despite a v healthy lifestyle and not fitting into any of the 6 main risk categories for heart disease, I have recently been told that I have blockage of one of my carotid arteries and also between 25-50% coronary artery blockage. I am only 58 and exercise regularly. I’m sure my autonomic system is being affected but can’t seem to convince anyone else.

    gressier
    August 9, 2016 at 1:30 am

    Gosh know the feeling only too well after having a very large benign mediastinal mass removed in December and this was followed by a massive chest bleed the following day – all before the CIDP diagnosis. Can’t help thinking that there might be a link though … I do know it is pointless but really regret not linking all my dots years ago i.e. the trigenminal neuralgia and thyroid issues. Thanks for the reassurance with the AFib as I am at that stage of thinking what next???

    gressier
    August 8, 2016 at 11:58 pm

    Sorry I ought to have said that it was my current neurologist who believes that I need’t panic not the cardio.

    gressier
    August 8, 2016 at 11:55 pm

    Thanks Jim can you please clarify the time sequence of your treatments for me please. I’m feeling a little rattled today with my facial pain and palpitations … and am not concentrating v well. You mentioned that the delay in getting onto PE cause permanent problems? I sent a msg to my neurologist last night asking about his decision to start me on IVIg instead of PE but haven’t had a response yet. I also made an appointment to see another highly recommended neuro in Melbourne but she doesn’t have anything available until next February!! Not wanting to waste more precious time than I have to – I just found a neurologist in Sydney who supposedly specialises in this area also and made an appointment for next Tuesday. Hopefully by then I will know more from my cardiologist re. my unconfirmed AFib etc. I feel a bit vulnerable living in a part of Australia that doesn’t have these specialists and am really scared of delaying the process any further. My current cardio seems to think that there isn’t any urgency and has said before that I have had disease for so long that a little extra time won’t make much difference – but I guess I have more to lose than he does. Also, these new symptoms are alarming enough for me to go to the Emergency Department twice in the last fortnight so obviously are very concerning to me.

    gressier
    August 8, 2016 at 7:47 pm

    Thanks Jim can you please tell me if PE is good for autonomic symptoms too? Excuse my ignorance but I am so new to all this that I haven’t got my head around the finer details yet )-: My neurologist wasn’t v optimistic about what I could expect in the way of improvements – seemed to suggest that the IVIg might slow down the progression of disease but that my nerve damage was too extensive to reverse any damage. Although my test results strongly suggest that I have had CIDP for a very long time (20 years plus) the cardiac issues and numb face etc are very new – maybe 2-3 months but escalating quickly. More advice please about my next steps would be v much appreciated.

    gressier
    August 8, 2016 at 12:29 am

    Hi this is my first time in a forum – hopefully it may answer a few questions for me too. I was diagnosed with atypical CIDP about 6 weeks ago and had the initial 5 day IVIg treatment 5 weeks ago and my second one only last Wednesday. I haven’t noticed any great improvements yet which is a bit disappointing – maybe slightly less breathless and more energetic but that may be all my yoga sessions! The thing I am most concerned about is the v recent development of a numb face and throbbing eye socket when I have heart palpitations at night. All new symptoms but am having tests done for the cardiac issues. Any advice/opinions anyone ???