new to forum, diagnostic mammo and ultrasound found large lumps

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Moira88
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Date Joined Apr 2017
Total Posts : 3
   Posted 4/15/2017 11:20 AM (GMT -6)   
Hi Exqualis, so sorry to hear of your further complications, but I'm glad your feeling better now. Unfortunately, I had a "light" case of Guillain-Barre' syndrome about five years ago after a flu shot...it was a misery, and I can remember feeling like I had a 50 pound weight wrapped around each leg when I wanted to walk. From your description, it sounds like you had a worse case than I did, but with time I'm sure yours will go away completely. I had other health issues going on at time, but from what I remember, it took about two or three months for me to start feeling better. I had no permanent after effects from the GB, but it was really frightening at the time because I didn't know what was wrong with me. My medical nightmares have been orthopedic in nature with neurological complications from surgeries, but eventually everything healed even although my doctors were doubtful about how I would land up. At the time I just decided to calm down, tune out the negativity, and try to enjoy my healing process. That's sounds crazy, doesn't it, but it made things easier to enjoy the help of friends and family, to savor all of the delicious food brought into the house, and to take great joy from very small things like a visit from a good friend. Keep getting better, and I'm sending you prayers and positive healing thoughts...

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14032
   Posted 4/17/2017 10:48 AM (GMT -6)   
Hi E, I have been out of pocket for a few days & was glad to see a post from you. However, I am very sorry to read about what you are dealing with on top of everything else.

When you are up to it you can fill us in on the details later. For now, I am sending many healing thoughts & prayers your way. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 97
   Posted 4/17/2017 10:53 AM (GMT -6)   
Moira, it's amazing you've had GB,too. I wish I could have a better attitude toward all my ailments like
you had. I admit to having a lonely sobfest last night thinking how I am missing my son's entire senior year of college. It was stupid and a waste of tears. I do need to fill in the details of my rather serious GB that began approximately 3/28. But one of the side effects of GB is neuropathy in the hands, and it's all I can do to write this little bit. Hopefully tomorrow will be a better day.

Post Edited (exqualls) : 4/20/2017 3:14:19 PM (GMT-6)


Moira88
New Member


Date Joined Apr 2017
Total Posts : 3
   Posted 4/18/2017 10:23 PM (GMT -6)   
Exqualls, I had many a sob fest too and my so-called "better attitude" only came many months after a really really bad attitude and when I started to feel better...after a nasty bout of GB that thankfully only affected my legs, and two major orthopedic surgeries, which had me in a hospital for one month and an extended care facility for another month. I was so happy to be on the other side of this ordeal and to be surrounded by my own four walls that I started to lighten up. Please don't be too hard on yourself, and remember that you are allowed to cry. There does come a point with illness, whether it be cancer or some other serious sickness, that you just hit a wall and have enough.
I think we're just starting to understand the genetics of cancer, but we still have very far to go. I have a very heavy family history of breast cancer, but so far it seems that I take after another side of the family with orthopedic and weird heart problems. Tomorrow will be a better day and in the meantime, I'm sending you prayers and positive healing thoughts...

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 97
   Posted 4/20/2017 3:43 PM (GMT -6)   
Moira, I love your attitude. I hope the family genetics for breast cancer continues to ignore you. You have enough that you deal with.

Okay, so when I originally woke up paralyzed and my closest hospital transferred me to the more prestigious hospital 45-60 minutes away that night, I was placed in a unit that seemed for people who had yet to be diagnosed. I can't keep track of all the tests I had overk the next 11-12 days there, but they were incessant. I was heavily drugged with IV dilaudid, (like 20 times stronger than morphine), plus had oxycodone and OxyContin. I think the last 2 tests they did gave the dignosis of Guillain Barre syndrome: a CT myelogram and a lumbar punture. The myelogram was weird--- the put some kind of nuclear liquid in me and then tilted me on a table in all directions, even upside down, briefly, to spread the liquid around. Anyway, they were sure of the diagnosis after those, so we luckily got approved for "the best" rehab hospital around.

Oh, before I get into my rehab stories from here I HAVE to tell the nightmare experiences at the hospital I had just left, but I am too worn out now. I'll just give a hint: think of the Jessica Lange "American Horror Story" tv series, this season called "Hospital"......

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 97
   Posted 4/25/2017 8:00 PM (GMT -6)   
I am healing very well from the Guillain Barre, except in the 2 areas I need it to heal most-- using my hands and being able to walk. I can barely do anything with my hands. I'll pick up a piece of paper with my left hand and situate it on the table, then grab a pen or pencil with my right hand, then start to write and realize the pen has fallen out of my hand and i didn't even know it. I can't tell if I am no longer holding something if I'm not looking at it. Proprioception it's called. Same thing is happening with my feet. From the safety of my wheelchair or walker i could make a huge effort to stand, with the safety of holding onto my walker AND my physical therapist holding onto me with a
belt around my waist. Without looking or thinking about doing it, one of my legs can just go off in any direction and down I would go-- if it weren't for my therapist. I've had my feet cross over each other, step on top of each other and I don't even feel one foot is on top of the other.

I'll try to write more tomorrow. If anyone
has heard of a connection between the chemo drug Taxol and Guillain Barre, please let me know. best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 4/25/2017 8:04:52 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14032
   Posted 4/26/2017 7:40 AM (GMT -6)   
E, I have heard of Guillain Barr but never knew anything about it. I went to the Mayo Clinics website & read up on it. I have to think the pneumonia & your compromised immune system made you a target for it to hit after reading over there. I could not find anything there about Taxol causing this. When you feel up to reading perhaps you can read about it there.

Sending many healing thoughts & prayers your way. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1672
   Posted 4/26/2017 6:07 PM (GMT -6)   
Exqualls, there is a LOT of information on this on the internet. I just did a search for it and pages of links came up. I opened one that is a site supposedly to a group specifically for this. You may want to check it out.
https://www.ehealthme.com/support-group/taxol-and-landry-guillain-barre-syndrome/

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 97
   Posted 4/26/2017 10:02 PM (GMT -6)   
Thanks everyone. I will read up on it soon, I hope. Or get an attorney to do it for me.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14032
   Posted 4/27/2017 7:12 AM (GMT -6)   
E, what I read about it was on the Mayo Clinic site & the two things that caught my eye was the compromised immune system & infections. They had some drugs listed but I could not find Taxol listed. Perhaps the site pmedic listed will shed some light.

We are all hoping you continue to improve, keep up the fight.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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