GBS diagnosis uncertain ? Help please

    • Trevor
      August 2, 2016 at 10:37 am

      In December 2015 I experienced a sudden inability to speak and went to hospital where it was thought I had had a stroke . They initially diagnosed Bell’s palsy and then my vision became double,swallow failed and breathing failed. I had to be ventilated and had a trackie.
      I had 5days of Iv.
      To date there hasn’t been a diagnosis – none of the docs can agree ! They say I have some reflexes (not all) some tsosis and eye movement issues and suspect it’s ‘atypical GBS’ . However on seeking a second opinion the prof at a send hospital prescribed prednisone and this had the effect of loosening my eye muscles so that I could move them pretty well again within two days – however everyone agrees that if the steroids were working then this would indicate I haven’t got GBS ! ….Since this shouldn’t happen . He actually suggested steroids to see if I had canomad which was unlikely but still as we didn’t know what it was worth testing !
      At the moment I have symptoms of strange eyes – a bit of dizziness and some double vision at the extremities as well as paralysed vocsl cords and swallow. Breathing is ok it seems and I can walk ok
      Any thoughts or ideas to help me understand what I have and how to fix it would be gratefully received

    • Jim-LA
      August 2, 2016 at 3:04 pm

      Although very difficult to offer diagnosis advice from the limited info you posted, your symptoms bear a resemblance to those of Miller Fisher Syndrome (MFS). Perhaps it would be worthwhile spending time to rule that in or out. Here are some info links for MFS:
      http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/MillerFisherSyndrome.pdf
      http://www.ninds.nih.gov/disorders/miller_fisher/miller_fisher.htm

      In addition, the forums here contain a great deal of info about MFS and you can do a keyword search to read more.

      Here is a technical publication that may help you and your doctors determine what you have and treat it:
      http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2013/02/AcuteCareICU13.pdf

      Good luck

    • Trevor
      August 2, 2016 at 3:29 pm

      Many thanks / the doctors didn’t find evidence of GBS or MFS when they looked at the blood test results or lumber puncture.
      The second one prescribed pred as he thought as a long shot it might be Canomad – he was surprised that my eyes had improved in terms of their movement within two days but scratched his head a bit since this treatment shouldn’t work if it is actually GBS !
      At the moment I have double vision although my eyes do move now along with vocal cord paralysis and some face paralysis .
      It’s do difficult to know which way to turn after 8 months

    • Nursenoel
      August 5, 2016 at 12:09 am

      Are you anywhere near a CIDP/ GBS center of excellence? I know that they are specialized in treating all of the disorders that fall under the category. Im not sure if any of the GBS variants can also be CIDP variants, however, the later is treated with steroids or IVIG. There’s also an advisory board of Dr’s I believe. Perhaps they could discuss your case with your Dr’s. It’s worth a shot. Good luck to you. I hope that they can figure this out so that you can get the treatment you need.

    • Trevor
      August 5, 2016 at 3:18 am

      Many thanks nurse Noel – I see there are three centres in the UK – I will investigate further. I’ve already been to two hospitals to seek opinions with no real success so this is very helpful

    • Tarhealing
      August 8, 2016 at 7:19 am

      I had what was believed to be a mild case of GBS 2 years ago. I had some cranial nerve involvement too-difficulty turning my eye, double vision, slurred speech, difficulty swallowing, balance issues. I have been helped tremendously by a physical therapist who specializes in vestibular and balance disorders. He has worked with me and given me exercises to help my vision and balance improve. The double vision can have to do with how the image you see is hitting in the eye and if the nerves/muscles around the eye have been damaged then it can affect this image not hitting in the right spot at the right time resulting in blurred or vision issues. It’s amazing at how this can improve with someone who knows how to work on it. Maybe you can check around for a specialist in this. My PT says that lots of problems can cause this kind of trouble so symptoms might improve even if the cause is not GBS. I thought I would have to live with this forever and he says that he fixes problems like this all the time.

    • Trevor
      August 8, 2016 at 7:47 am

      Great that is very useful I will investigate many thanks

    • Trevor
      August 11, 2016 at 12:13 pm

      My eyes move left and right now since the prednisone rather than being stuck like an owls .
      However at the far right and left my vision is double / any advice on how to improve this please ?

    • Marcel
      August 14, 2016 at 12:33 pm

      If you read Holly Gerlach’s book on her experience with GBS, you’ll see she had double vision as well for a while. I rememeber it went away on its own, but you might ask her – she’s on facebook.

    • Trevor
      August 16, 2016 at 4:06 am

      Many thanks I’ve made contact as suggested

    • soonerscrapbooks
      August 29, 2016 at 7:13 pm

      I had what doctors thought was mild case of GBS in 3/2014. After 2 years of physical therapy…I am not much better. I had periods where it felt like I was getting better than I would have a relapse. I am at an ER now in Texas b/c I woke up with numb & tingly hands & whole body muscle spasms. They are now thinking it could be CIDP b/c my symptoms have gotten worse over 2 month period. I am in Austin but I am thinking of going to Houston to a center of excellence since there are none in Austin.

    • Jim-LA
      August 30, 2016 at 3:26 pm

      There may be some good doctors closer to you than Houston. Please contact the GBS-CIDP liason in your area here: julie.bell@gbs-cidp.org her phone is (210) 885-0054. She is located in San Antonio but has knowledge of the wider area. UT has two centers of excellence near you, Houston and Dallas if you can’t find an expert closer.

      Good luck with your recovery

    • Nursenoel
      August 31, 2016 at 12:35 pm

      You’re welcome, Trevor. I just sought out a Center of Excellence Dr after being put through the ringer myself. I certainly understand how frustrated you must me.

    • ajrelaford
      September 17, 2016 at 4:58 pm

      My six year old son just got diagnosed with Miller Fisher or pharyngeal-cervical-brachial variant of gbs. Symptoms are exactly what he just experienced. Also had to have a G tube put in for nutrition and struggling with that now. I am sorry, but that is all the info I have. We had to contact a neurologist in Stanford.

    • Trevor
      September 29, 2016 at 11:44 am

      Hi

      Prednisone has worked or at least it seems that way. Several days after starting on 40mils my eyes became easier and moved left and right , my tongue moved right round my mouth and my swallow started to improve.
      This brings up a question no one can answer ???
      The steroids should not work if I have GBS or MFS as they have said all along . These diagnosis do not respond – unless the improvement is merely coincidental then it’s not GBS st all !!!
      So I ask what have I got ??
      Please can anyone advise ?

    • Jaimerz68
      September 30, 2016 at 3:38 pm

      Hi Trevor,

      It sounds to me that you may have the chronic version of GBS, CIDP.

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