FormerGBSgirl30yearslater

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  • FormerGBSgirl30yearslater
    January 8, 2015 at 6:27 pm

    That is amazing, thank you so much for the information, I will certainly be reaching out to her. 🙂

    FormerGBSgirl30yearslater
    July 23, 2010 at 3:17 pm

    Well, I wish you were right, but unfortunately not. I have completed all my testing and doctor visits at the Mayo clinic with no answers. After another EMG, I was told by the Neurologist and the Rheumatologist here that there is NO WAY my symptoms are related to GBS in any way, nor do I have Fibromyalgia or any other nerve or muscle issues. I am headed back to Seattle, with yet again, no answers. Because my ACE levels are elevated, the only thing associated with this is Sarcoidosis, but because my chest xrays look normal, I’ve been told that there is no need to dig any further into that.

    So, I walk like a 90 year old woman, my legs shake like a leaf on a tree, the pain in my legs is so excrusiating that it requires pain meds every 4 hours, but because my tests come back normal…guess what…I’m normal. Wow!

    The only thing I am walking away from here with is a prescription for Amitriptyline (Elavil), which, I’ve been told is for depression. Good thing because I am certainly depressed now. Another wow.

    By the way, yes, I have tried supplements and all the other homeopathic junk…nothing.

    So, I’m headed home with an empty wallet and a prescription for depression…yet another and final wow.

    Do not know where to go from here. I am more than sick of doctors and their by-the-book mentality. Ugh.

    FormerGBSgirl30yearslater
    July 21, 2010 at 12:58 am

    Hello All…I’m currently in Arizona for my Mayo Clinic appts. Went today for my third EMG, which was just awful. Unfortunately, and thankfully, the results were normal. I see the Rheumatologist tomorrow. My initial appt. on Monday was with the consultive physician, who like all the other doctors, came to the conclusion (prior to any testing, mind you) that what I’m experiencing my be Fibromyalgia….soooo tired of hearing this, as I do not have the typical “trigger” points and areas that are usually common with Fibro. I am so very frustrated, as I know there is something more going on with me, but when most all tests come back normal, there is simply no where to go. They did do extensive blood work, which I should have the results for tomorrow or Thursday. I did mention the GBS and the post-polio syndrome, but no one seems to be interested in this. ?????? Does anyone know or have any suggestions as to how I can have the doctors take a closer look at my history with GBS? Is there any special testing associated with the similiarities to post-polio syndrome? Does it typically show up in blood work? Any advice would be so very appreciated. Thanks in advance for any advice!
    Dana

    FormerGBSgirl30yearslater
    June 30, 2010 at 4:02 pm

    Thank you so much everyone…this is very interesting and I’m rather surprised to hear that I am not alone. I am scheduled to go to the Mayo Clinic in AZ on the 19th, as we are getting no where here in WA state. Yes, I have been prescribed everything! All the Fibromyalgia drugs and narcotics, to no avail.

    Most all of my testing have come back normal, including EMG and EEG, MRI’s, etc. The only thing that comes up are that my ACE levels are elevated. They first tested me in the summer of 2009 and my ACE levels were high, and just recently, they retested, and now they’re even higher. Has anyone had any experience with this? I think the only testing left, that I know of that could be done is a spinal tap and/or muscle biopsy. Not sure what the Mayo will think, but when scheduling the appt., they seemed very interested in my GBS history, which was surprising to me, as NONE of the doctors here have thought it to be related.

    So, anyone with any history or knowledge of ACE levels and GBS?

    Thanks to all who responded!
    Dana