Hubby of Bubbly – New to Forums
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August 21, 2010 at 3:48 pm
Hello to all you guys out there. I’m new to this forum. This is indeed a very good platform given by this foundation to talk to sufferers of GBS.
My dear wife Bubbly, who’s 30 yrs old, problem started with mild fever (evening only, used to subside by morn.) with numbness in hands & feets since 22/05/2010 following strenous gymming for 2-3 months post natal. Our family Doc. said it might be a viral fever. Gave 1-2 medicines. But weakness was progressing. Later on she was diagnosed with Typhoid by her Gynae. In her hospital the physician gave a course of antibiotics but said she w’d be needed to be admitted in the hospital to administer intravenous Glucose if the weakness doesn’t subsides for Enteric Fever. But just after 2 days she was too weak to walk on her own properly. We admitted her in the hospital on the even. of 10/06/2010 & intravenous glucose started. The very next early morn. on 11/06/2010 she suffered right facial deviation. Docs. at first thinking of it as Bell’s Palsy adminstered Dexamethasone (steriod, which I later came to know sh’dn’t be given in GBS). The Docs. then followed a Brain MRI for any clot or haemorrage but negative. Later in the day we took her to a neurologist who just by Physical examination and going through the case history diagnosed her with GBS. she was immediately admitted in the ICU and IV IgG started for 5 days. Later on while in ICU she suffered diplopia on left gaze, B/L Facial palsy (complete facial paralysis), used to speak with difficulty, used to cough while drinking a single small sip of water & areflxia. She was given IV IgG for 5 days in ICU in hospital where she stayed for almost a month in private room to watch out for any further complications such as pulmonary. Thanx GOD, it struck till abdomen only. She was discharged on 06/07/2010 & we brought her home. Now one & a half month after her discharge she’s still not able to stand, even support (she starts to shiver), can sit on her own without support but not for long, diplopia far better than before, grade 4 strenth in arms but ataxia & grade 2-3 in lower limbs. Lesser numbness but heaviness in whole body, incontinence in bowel & urine, stiffness in muscles (suffers alot of pain while stretching exercises). She’s having her physio class each day in the morn. & in the even. I help her in her physiotherapy.
I wanna know when she’ll be able to walk or atleast stand on her own. When will her numbness fade away? We got married just 3 yrs back & I have a son who just turned Two on 04/08/2010.
My life is like hell as I have to look after both of ’em shunning my work. What are the chances of relapse in her case. (Yesterday probably she overexercised & following it felt heaviness in her chest, I was petrified)
I can easily comprehend the pain & agony by which all the members here went through. It’s such a devastating experience, I guess no one sh’d ever experience. May GOD have mercy on all the GBS patients.
Are there any medicines available which assist in regeneration of Myelin ?
Please guys help me out, I have a barrage of other questions to ask.with warmest wishes
Harry
GOD BLESS YOU ALL !
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August 21, 2010 at 4:43 pm
Welcome Harry & Bubbly!
Glad you found this forum. I may not have much to offer, but others will pitch in and share what we know. Your wife has a long way to go. You’ll see improvement/changes on a weekly/monthly basis – not a day-to-day basis. So patience is of upmost importance. And when in doubt, have her rest and then more rest. There isn’t much to do help the myelin, but new advances in stem cell are looking great for people like us. The only thing that can be done is to treat the nerve pain with a variety of drugs.
Oh, and don’t forget to have her rest, rest, rest!!!
You are not alone… please keep us updated.
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August 26, 2010 at 3:15 pm
Welcome to your GBS/CIDP family. You are not alone. My heart & prayers go out to you both. Lord have mercy on young families with this terrible desease.
Praying for you,
smitty -
September 9, 2010 at 12:43 pm
Thanx to all of you guys for such a warm welcome ! Really appreciate that.
I want to ask a question to all the members. My son who’s 2yrs old have his Swine Flu vaccination (Injectable not Nasal, according to his Pediatrician) due on 14th of Sept.10. Sha’ll i go further with it or not as I’ve come across several cases of GBS post swine flu vaccination? I’m in great confusion as I’m already suffering a lot due to my wife’s GBS. I cannot take any risk with my only child’s life.
I asked my wife’s physiotherapist’s husband who’s a doctor that i can do without the swine flu vaccination of my son if i’m having such apprehension in my mind. Moreover we don’t consume any piggery product. But my child’s pediat. says it’s totally safe as now it is injectable vaccine & not nasal one & hence it is non reactive as against the nasal one. What does non reactive apply to, non reactive to what?
Please help me on this. I’m in a dillema. Sha’ll I go with it or drop it?
Now about my wife she’s improving. Today she walked without the support of walker, but me & her PT were holding her hands. Then she went down & up 6-7 stairs with holdind the railing of the staircase from one side with her hand & her PT from other side with me keeping a watch from her back that she don’t fell.
I need a reply regarding Vaccination from all of you guys ASAP.
with warmest regards
Harry
“May LORD have mercy on all the GBS patients”
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September 9, 2010 at 3:05 pm
Harry,
I had the injectable H1N1 vaccination last fall and had a bad reaction. I was told it was mild GBS, but it may actually just be an ongoing immune mediated reaction. I will never go near the flu vaccines again nor am I going to have my children get it probably (2 and 4).
Now on the flip side, everyone in my family last year, including my kids, got it and they were all fine. It is a 1 in 100,000 chance that your son will have a vaccine reaction. Chances are that he will be fine, but I just wanted you to be aware that there are those of us on here, about 5 at my last count, that have had a reaction to the H1N1 vaccine. I am also hearing about reactions from other vaccines. Today someone posted about a 19 month old having GBS from the chicken pox vaccine.
I am not sure what to do about my kids myself this year because I am worried about them getting the flu, but what happened to me was so much worse, and I would not want to take the risk of this happening to them. So I am on the fence too, but leaning more towards not giving them the vaccine.
On another note about the recovery process, everyone else on here is correct about PATIENCE. Best of luck to your wife on a speedy recovery and it will be a lot of ups and downs.
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September 9, 2010 at 6:46 pm
The advice I’ve gotten is to be absolutely SURE you are being vaccinated with a ‘dead’ serum, not a live one!
Since I’d had one flu shot after I got this and before I was diagnosed? That one shot caused a ‘reaction’ of one very sore arm, the site still has a HARD knot at the injection point… So.. dead or alive? I am leary. But, I do keep my life fairly ‘contained’ interms of outside contacts.
I mite just try it this year? IF so? I’ll let you know!
Most docs do encourage it tho. I am just too chicken! -
September 26, 2010 at 6:02 pm
Bubbly should be able to stand, walk, and even function fairly normally one day. A lot of it is rest. We all have a lot of fatique and even some emmotional problems with GBS or even CIDP. Support her, and let her know ever step forward no matter how small is special. The length of this illness is not the same in anyone. We all just pray and support each other with our best wishes.
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