Your Replies

  • February 6, 2019 at 5:32 am

    Hey all, just another update! [Almost a year later!]

    I am still here and lurking, just haven’t posed much. I would say, in a sense, things have progressed for me. I started using a power wheelchair maybe two months after I posted about 10 months ago. After the forearm crutches required too much strength to use, and caused a ton of pain, the old PT I worked with and I sat down and made the decision to move forward with a power wheelchair for outside of the home. [Where I live is not wheelchair accessible]

    I now have a beautiful Quantum Edge 2.0 from the Muscular Dystrophy Association. I am blessed to have this, and it gives me so much independence and freedom.
    I became a Certified Peer Specialist [person with lived experience who can assist others in their journeys of recovery] and Community Health Worker in November 2018. I used my old power wheelchair to get to class. I used my old rollator [a walker with a seat] for graduation. I begin a career as a Certified Peer Specialist at a local disabilities organization in March. We work with people who are wheelchair users, like myself, and I am becoming a part of a new program who aims to help those who also have mental health struggles–bridging the gap between medical and mental health. It is truly groundbreaking.

    My life is going the way I want it. I have mostly accepted that I am now disabled, though, that does not stop me from searching for concrete answers about what is going on with my physical health. I have my first EMG in about 10 months today. I am curious to see what it shows. I have specialists, upon specialists, upon specialists. I have been diagnosed with POTS [Postural Orthosthotic Tachycardia Syndrome] and receive saline infusions through a PICC line daily. They help, mostly because I have IBS as well and I do not absorb things, like fluids orally, very well.

    As far as my urinary incontinence–I do not have many answers. I am going to be starting pelvic floor physical therapy in the upcoming months. I am hoping this helps. Because I am a trans man who was assigned female at birth, this is the best method, my urologist says. I also hope to get clearance to have lower surgery [genital] past 2020. I am hoping this pelvic floor physical therapy resolves my issues so I can move forward.

    I also see a rheumatologist, who a few days ago, ran a ton of blood work. He is very thorough and told me that I will most likely test positive for my whole life on ANA and SSA tests due to my bout with GBS. I thought that was interesting. He said that, at any time, I could get GBS or another autoimmune disease. He feels that my symptoms and troubles are mostly related to past GBS and the nerve damage associated with that.

    I am also looking into neurologists who specialize in Small Fiber Neuropathy, which is common in those who have POTS. I have recommendations from my cardiologist, who is amazing.

    If anyone ever needs any support, has questions about what I have gone through, etc, feel free to reach out. I go to mental health therapy 1x a week to process all that is happening in my physical health life. It is a lot to take in. This disease is truly a mystery. I never thought it would be with me for my whole life.

    May 26, 2018 at 7:45 am

    Hi everyone,

    I had a port at age 8 for PE as well. I remember getting it and getting it removed pretty well. It was an interesting experience for sure. I hope that my life goes back to normal soon, like you said. Though, I have not ever been “normal”! Haha!

    I cannot receive subcutaneous or home IVIG because I have autonomic dysfunction, caused by CIDP, which causes my heart rate and blood pressure to jump around. Most importantly, last time I tried to get IVIG at home, my BP dropped suddenly and the home infusion nurse was not equipped to deal with it. I will not be getting infusions at a hospital, but rather a small infusion center at a doctor’s office. They are a little more well-versed in this type of thing and can monitor me better, have the equipment, etc. While home is comfortable, I need professional monitoring to make sure I am okay.

    A PICC line, though, is something I will have to inquire about. I have a few questions. I have been reading that you cannot bathe/shower with them or swim, etc. What do you do with that? Also, I read that you cannot bend with them in some fashion. How do you manage?

    I hope you don’t mind answering my questions. Thanks so much for your and everyone else’s support.


    May 25, 2018 at 10:30 am

    Hello there,

    I don’t know what you should do about your job, to be honest…but I would get treatment in any way you can. I waited a year before I got treatment because I didn’t want to admit that I have CIDP. I am now using a wheelchair most of the time, can only walk short distances, have trouble with stairs, my bladder incontinence is worse, my eyelid is starting to droop on one side, have extreme neuorpathy pain, etc. It has definitely gotten very bad, to the point where I went to the ER one day and they admitted me to the hospital.

    I know your job is very important but I don’t know, maybe talk to your employer? I am not sure…I just know that treatment, early, is so, so important.

    Good luck! Solidarity.


    April 7, 2018 at 2:49 pm

    Hey everyone,

    Just an update from those who were following this post.

    The University Neurologist basically told me that I had permanent, residual damage from the GBS. He believed that, because my strength was good, that I could “forget about GBS”. Needless to say I was frustrated.

    I take Gabapentin 2x a day, walk with forearm crutches now, have neuropathy, issues walking, can’t go up stairs much. GBS affects every part of my body, from my bladder to my blood pressure and heart rate.

    My primary care doctor is very educated and has basically suggested that GBS is affecting me now. I have done my own research and have found articles about “post GBS”, similar to “post polio syndrome” and feel that is what I am experiencing. I also read that folks with GBS do not recover from fatigue the same way that others do. There are two articles I am speaking of. I will link them at the bottom of this post.

    I am suffering from dysfunction of the autonomic system now as well, which was controlled by a medication (originally I was told this was anxiety). I have to now take it only 1x a day because it was causing my blood pressure to drop while switching positions. So, now my heart races a lot and is all over the place, causing me to be dizzy, lightheaded, etc. I am seeing a Cardiologist on the 24th of April.

    My urologist is having trouble controlling my incontinence, and suggested a few things for me that are invasive. One of them that sounds promising, is basically a pace maker for the bladder that is surgically inserted near the back. However, I would not be able to have MRIs with this, which is troublesome. I am still deciding what to do.

    As far as the physical side goes, I am in Physical Therapy 2x a week. My PT is pushing me a bit farther than I would I like. The bike she has me pedaling on causes neuropathy in my feet, and I have told her that. It was really getting bad on Thursday, and she told me to just “pedal through it”. I have never experienced such pain and ended up crying after getting off the bike. I do not want my sessions to be like this, so I think I am going to have a talk with her.

    I started walking with forearm crutches, and it uses a lot of muscles that I am not used to. It is very difficult but I hope I get used to it. Walking is really hard and I don’t really leave the house except for appointments and with my room mates. I am very much in pain a lot when I walk. I wonder what will be the resolution.

    I hope that everyone here is doing well and thank you for reading this post.

    Here are the links to the articles referencing post GBS and fatigue in GBS:

    Post GBS: http://www.gbsnz.org.nz/research_and_resources/does_guillain-barre_syndrome_recur

    Fatigue in GBS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824125/

    Good luck everyone!

    November 30, 2017 at 8:37 am


    I have been recently trying to exercise more. I had GBS about 21 years ago. I hope I am not too far out to respond, but my response may be helpful.

    I find that exercise needs moderation. I have a FitBit and track my steps, sleep, etc. I have been noticing that after days where I get over 10,000 steps, I only average about 4,000 the next day. I need a day or two to recover. Of course, other factors come in, like what am I doing those days. But I feel it, too. I need a LOT of sleep when I get the recommended 10,000 steps a day and need to recover.

    I am trying to get the 10,000 steps [or more] 3x a week, but it is hard. I get intense burning and numbness in my lower back and legs when I walk a lot and need frequent breaks during my walking trips. I push myself through it, but it is very painful.

    Rest is the only thing that helps my pain. [And Neurontin!] I push myself a bit more than I should. I feel that I must stay active, but find that perfect balance where I’m not over-exerting myself.

    Good luck,

    November 28, 2017 at 8:01 am


    I have a very flawed memory.

    I have been experiencing urinary incontinence for many years. I feel like that may be a residual effect for sure. The other symptoms, I do not really remember having them before. It is possible that I am just forgetting. It is times like this that I wish I had past medical records or a medical journal that I kept!

    Thanks for your time,

    November 21, 2017 at 4:33 pm


    I feel as though I am under less stress lately. I still am not leading a totally stress-free life, and do have a bit of stress in my life. But, I wouldn’t say there is a spike in stress in my life. [Aside from the usual ups and downs and not knowing what is wrong with me!]


    August 30, 2017 at 7:40 am

    Hi everyone,

    My “failed attempt at IVIG” was when the doctor suggested by a forum member started me on home IVIG [Octagam] and my blood pressure tanked the first two days and we decided to stop. It was something like 70/45ish at one point. I was not feeling too well!

    Anyway, that’s why the doctor suggested by a forum member suggested plasmapheresis. It has worked for me in the past, the first time I had GBS.

    I also do not understand how I have zero reflexes anywhere and still am considered “normal”. I am going to be seeking a third opinion.


    August 30, 2017 at 7:40 am

    Hi everyone,

    My “failed attempt at IVIG” was when the doctor suggested by a forum member started me on home IVIG [Octagam] and my blood pressure tanked the first two days and we decided to stop. It was something like 70/45ish at one point. I was not feeling too well!

    Anyway, that’s why the doctor suggested by a forum member suggested plasmapheresis. It has worked for me in the past, the first time I had GBS.

    I also do not understand how I have zero reflexes anywhere and still am considered “normal”. I am going to be seeking a third opinion.


    August 29, 2017 at 4:29 am

    I should add I have muscle twitches, low blood pressure and high pulse, no reflexes at all. Also, very serious fatigue.

    August 22, 2017 at 5:55 am

    Hey Teaberry,

    I was recommended a port for plasma exchange by a doctor here in Philly. I am getting my second opinion today from UPenn. I was also recommended a port when I was supposed to start IVIG.

    I’ve had one for plasma exchange before, when I had GBS, age 8 or so. I got it put in under general anesthesia, but, I thought I remembered them taking it out while I was under local for some reason.

    Anyway, I’ve never had one while outside of the hospital. If plasma exchange is the next step, I’d be curious as to how this will change my life.

    Keep us updated on your port journey!


    August 22, 2017 at 5:45 am


    I am seeing Doctor Ellman today, actually. I will post a follow up.

    My pulmnologist thinks it might be GERD now. I really don’t know about the coughing! When I can afford some of the medicine she wants me to get, if it helps the cough, that will tell if it’s something else or GERD.

    These things are certainly a process!


    August 4, 2017 at 4:34 am

    Hey everyone,

    I am following up with my pulmnologist tomorrow because the cough hasn’t stopped, even with the C-PAP settings changed a few times. So, that’s step one.

    For the people who have had their blood pressure tank–the same thing happened to me, and I actually stopped IVIG because of it. I wonder if we just need to pump fluids if I decide to do it again.


    August 4, 2017 at 4:31 am

    Hey everyone,

    Thanks for the replies. I am seeing one of my Neurologists tomorrow to find out what the next course of action should be! Then I have another appointment with another specialist on the 22nd to try and see what they say (2nd opinion). The one on the 22nd is the one who originally said I was “normal”.

    Anyway, I have had a full cardiology work up and I am totally fine. No issues there.

    Also, I am sorry to hear about the rash people have been experiencing. That’s got to be uncomfortable.

    More updates to follow,

    August 4, 2017 at 4:26 am

    I, personally, do not get any vaccines after my bout with GBS at age 8 and current CIDP diagnosis. I am sure I received regular childhood vaccinations, but I will not get a flu shot or any other vaccine. I feel it may have caused my GBS at age 8, but I am not sure, as all of my family who was around at that time has since passed on.