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This topic contains 19 replies, has 11 voices, and was last updated by  Faust 9 months, 1 week ago.

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  • #103573

    daveoh
    Member

    Hello , I only spent a week in hospital and got the IVIG treatment for GBS. It appears to have only affected my arms .hands , legs and feet. I spent a week in physical rehab as inpatient and currently going twice a week as outpatient. From what I’ve read and heard I obviously had a mild case compared to most. It,s been 2 months but I can walk but with footdrop. I feel slightly stronger every day but I’m very concerned about my weak hands – fingers . My job requires handstrength and though they appear to be getting stronger every day what are my chances of having most of the strength return seeing that I had what appears to be a mild case.

    #103575

    Chrissy
    Member

    Hi Dave,

    I also thought I had a mild case until about 10 years ago when residuals started kicking my butt. My neuro at the time sent me home by myself with only neurontin. GBS is the gift that keeps on giving. You will see throughout these posts that we all talk about resting and when in doubt, get some more rest. Fatigue is what we all have along with zaps, zings and I just forgot what else I was saying. Oh ya, memory is no good! On hand strength tests the kicker is can you sustain it?

    Be Well

    #103576

    daveoh
    Member

    Thx Chrissy, I have not had any pain as of yet. So far my hand strength appears to be improving daily. I go in for a nerve conduction test in a couple of weeks. I was in excellent physical condition before this happened. I have noticed quite a bit of muscle loss though. I plan on getting back in gym as soon as I’m comfortable or wont hurt myself. Its been right at 2 months total right now.

    #103588

    Keep at it Dave, some, if not all of a lot of what you lost will likely return. I still struggle with playing the axe, but it’s a far cry from where I was. I remember slinging on my Les Paul (10 lb. guitar) and very nearly falling over forward because of the weight! Not to mention the strings felt like I was playing on the edge of knives. But I am a lot better.

    Some of us have met folks who have fully recovered (they don’t hang around here, and I don’t blame them). But recovery appears to be different for everyone. It sounds like you are on the right track! The gym is a great idea once you have the strength. I enjoy the pool myself. Another lovely therapy has been massage. This has offered some fantastic relief and helped at times to improve mobility.

    Best is to avoid doing NOTHING! Any effort you put towards recovery is admirable and every ounce of success should be fully celebrated. Stay cool!! :)

    #103598

    daveoh
    Member

    Thx Guy I guess I’m just concerned how long it will take me to get back to work…heck I better be happy that there is a great possibility that I can right. :lol:

    #103992

    GH
    Member

    You are extremely fortunate to have had such a quick trip through the hospital. I believe your chances of a full recovery are good. I was in the hospital for 18 weeks. Much of that time, my leg and foot mobility was at zero, but I had therapists protecting my feet from developing contractures. When I got on my my feet again, I could barely reach neutral position to allow standing flatfooted. When I started walking with assistive devices, I had to compensate in my gait for foot drop. Today, 16 months into my recovery, I can walk without a cane and with a normal gait. I still carry a cane when I go out, because my knees are wobbly and my feet hurt, but I don’t use it much. Above the knees, I have been near normal for quite awhile.

    It takes time, but you will likely regain full arm and hand strength and coordination with regular exercize, I think.

    #104081

    daveoh
    Member

    Had nerve conduction test today. Doc told me that my axon motor nerves were damaged…oh really :-) . Sensory nerves appeared ok. I already knew this since I never suffered any numbness or loss of sensation. I continue to gain a little strength daily but it is so slow. I thank God daily that my illness is mild compared to the majority of cases I’ve seen on this forum. I’m praying we all recover.

    #104086

    GH
    Member

    It is important to know the extent of axonal damage. Demyelination heals relatively quickly and completely. Axonal damage takes much longer to heal, and may not recover 100%. Not that you can do anything about it, but I think it is helpful to understand what has happened and what to expect. I have axonal damage in my legs, and my foot drop has been very slow to correct, but it is pretty good now. There is a good chance your foot drop will correct, but understand that it may take awhile.

    #105783

    mpozarski11
    Member

    It seems to me that i had the same case of you, cause i only suffered the loss of my strenght in arms, legs, back amd neck. I spemt a week too, but the only difference is that i didn’t receive any treatment like IVIG cause the docs told me that in mikd cases its better to avoid the IVIG. Today has been 2 months of that week in the hospital, and i feel just like your posts, i can walk, i can run but it will kill me, but i feel like my arms are weaker than my legs and my hands too. I’m 20 years old. So before this GBS i played competitive soccer, and had perfect physic state.
    I can read that you post this in Febreaury, can you tell me how are you nowadays please? Cause i’m really concerned

    #105788

    daveoh
    Member

    Hello mpozarski11 ,
    I went in hospital Dec 2011
    I am continuing to gain strength every day. It has been a very slow and steady recovery process. The key word is recovery. I continue to take joy in the fact that I am getting stronger every day. My Doctor and everyone familiar with this condition will tell you that your hands and feet are the last parts of your body that will regain strength due to it being at the end of your peripheral nerves growth.
    My hands and feet are still weak but I can tell they are getting stronger every day. Just a few short months ago I couldn’t even open the door , turn the ignition on the car , open a zip-lock bag . My grip strength was practically non existent. I had very noticeable footdrop and was unable to get up on my tiptoes or jump in the air. I can jump a couple inches off the ground now and getting a little lift on my tiptoes. I know it does not sound like much but believe me when I tell you every daily gain feels great. I was in great shape before this happened to me as I was working out with a popular workout video. I have a very strong core and can do plenty of ab work but pushups are very very difficult.
    Youth is on your side and you should do great. Stay positive because it could have been a lot worse.
    My Doctor told me last week that he just got a patient that can barely move at all from the neck down.
    Hope this helps.
    Live strong my friend

    #105792

    mpozarski11
    Member

    Reading your “case” I noticed that my GBS was milder than yours, I’ have been reading cases and i’m thankful that i didn’t get a higher level. But i dont know how to get mental strenght maybe its beacuse im 20 years old, but it gets me crazy the idea that “yesterday” i could play two folowed soccer matches, and now i can barely kick a ball. It could have been thousand times worse, but im tired of being tired. I admire you men, really. How old are you?

    #105794

    mpozarski11
    Member

    I’ve got another inquiry, sorry to bother you so much, but i need to find resembles. Do you often feel kind of dizzy or unstable?

    #105801

    daveoh
    Member

    Hello mpozarski11,

    Its no bother at all…that’s why I joined this forum… to help and get help.
    I never suffered any dizziness. I was only unstable standing due to muscle weakness.
    I,m 52 years old. When I was your age I was playing college football. I ran track and played football in high school. I know that was quite a while ago but I continued to work out off and on.

    I also get tired of being tired. It is at that time I think of how much worse it could have been.
    I have my 35lb dumbbells that I use to do bicep curls laying in the corner of my room. Last month I couldn’t even pick one up. I can pick them up now. No curls yet but I know I’ll get there.
    I do wrist curls etc… with 5 and 8 LB dumbbells. I also work my hands with a handgrip.

    #106550

    Jilly
    Member

    Hello all, I had some version of GBS in 2010 which had me in hospital 6 times in 6 months with a course of IVIG each time. By that time the neurologists had decided it was CIDP – but I had other ideas. I have an amazing local doctor whose goal is to treat the root cause of any condition, not just relieve the symptoms. I also sought advice from a friend who runs an international health programme for people with serious illnesses like cancer and MS using diet and meditation. These are the things that have allowed me attack this condition at the root and with much more optimism than my neurologists had – and it has had results.

    To give you some examples, I take UltrainflammX daily which my doctor tells me contains a substance that over time (years) will reverse my immune system out of autoimmune mode; I adhere to many of the diet and supplements recommended for people with MS as outlined here: http://www.overcomingmultiplesclerosis.org/Recovery-Program/Diet/ – not that what we have is MS but there are some similarities and we can benefit form what they have learned; lastly I have recently been reading up about a Chinese herb called Chang Shan which has been found to reduce the abnormal activity of TH17 immune cells in autoimmune conditions – I am considering trying this out.

    Mostly I urge everyone to try diet and supplements to treat the root problem. Meditation and prayer have also been an essential part of my recovery. After the first 6 month period and the 4-6 months recovery after that I have had just 2 small ‘episodes’ of symptoms of weakness, and that is with a very busy job and life in general. It is possible to overcome this condition but we have to try everything we can get our hands on! I know I still have CIDP but I am not going to allow it to become the centre of my life.

    I wish everyone all the best .

    #106807

    Hi Daveoh,

    I’m interested to hear a little more on your recovery. My brother was admitted in December 2011 as well and has had a slow progression. AT the beginning his grip strength was measuring 0.5 and 0.7 lbs/sqinch and is currently at 6 and 11 almost 10 months later. He was never paralysed, but had lost significant weight. He has put back most of the weight due to heavy dose of prednisone and 35 plasma treatments. He is mobile and can walk around, but can’t stand still. His core strength is good, but wrist and hands are extremely weak. Did you experience the same weakness and had progression where you could function without aid? I know we are really only 6-8 months into recovery, but his case seems to mirror yours and would like to hear if you had similar transitions.

    Anything would help to guide us.

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