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Forums Forums GBS – Adult Does this sound like GBS?

This topic contains 17 replies, has 4 voices, and was last updated by  Jim-LA 7 months, 1 week ago.

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  • #109334

    danmanca
    Member

    About 5 weeks ago had a sore throat, went to Dr and was diagnosed with Strep and took medication for it. After 2 weeks still tightness in throat. Started getting tingling in my fingers and toes. About a week later stiffness in jaw, difficulty opening jaw wide, tingling in face. This week my legs mainly my thighs have been sore and my legs feel really heavy when i walk. Also my back has gotten sore as if I have difficulty standing up straight. Also I feel shortness of breath with minimal physical activity.I’m at my desk now feeling like I’m breathing hard. just sitting at my desk. I walked up the street today and could barely breath.

    I’ve been to Dr and had EKG, Chest X-Ray, Blood tests to rule out vitamin deficiencies and other common illnesses. Gone to ENT and they put a camera in my throat and didn’t find anything. Suggested it could be related to heartburn but I’ve never had it before and I am not convinced of this being the answer. The past two days extremely weak and feels difficult to take a full breath. If I run even a block I feel extremely winded. Does this sound like symptoms of GBS?

    #109335

    JudithKay1
    Member

    Hi Danmanca: Before I was diagnosed with Guillain-Barre Syndrome in November 2012 I did have a very sore back; I consulted a local urgent aid center which felt that I had osteoarthritis. Unfortunately they didn’t refer me to their main hospital for a spinal tap and EMG, so my diagnosis was delayed four days at which point I remained in a good deal of pain and was taking falls. At that point I checked into a different hospital’s ER and after having the above tests as well as other ones in time was diagnosed with Guillain-Barre Syndrome and the medication which helped me primarily was IVIG, with lots and lots of physical and occupational therapy. I returned to work in March, 2013.

    Interestingly as I have asthma (well controlled) I was not having problems breathing. I did however have the tingling in my fingers.

    I think I would have this looked at to rule out GBS bearing in mind that it’s a bit on the rare side even from the perspective of medical personnel.

    Please keep us posted.

    #109336

    GH
    Member

    Could be, but it’s probably a little early for the CSF test. If your condition is getting progressively worse, you need a neurologist looking at it as it progresses. An ENT wouldn’t know much about GBS. Did your GP check your knee reflex?

    #109338

    JudithKay1
    Member

    GH is correct about the knee reflex check.

    Perhaps your physician can refer you to a neurologist. I did not have contact with one until I was hospitalized.

    #109341

    danmanca
    Member

    Thanks, I’ve been feeling extremely short of breath even when just walking a little bit, feels like I can’t take full deep breaths. Hands also feel extremely weak and difficult to extend the fingers fully. Last few days I’ve been feeling a tingling and numbness in my face. Are these symptoms? Been to my PCP 3X and he doesn’t seem concerned but I’m going to try and get back in today. Thanks for the quick response.

    #109342

    JudithKay1
    Member

    Contact your primary care physician, emphasize how you are feeling in very specific terms, and bring in a copy (or fax) of a website pertaining to GBS. I like the one from Mayo Clinic.

    #109343

    GH
    Member

    Are you having balance problems? Is there weakness in your facial muscles affecting chewing, for example? Any vision problems? What about the knee reflex? My PCP wasn’t too concerned the first time I saw him about my developing condition. The second time I saw him, a week later, he found I had no knee reflex and he called the neurologist right away. When I saw the neurologist a few days later, he put me in the hospital the same day. GBS is a medical emergency, particularly if you are starting to have difficulty breathing.

    #109349

    danmanca
    Member

    No not having any balance problems. Tingling sensation in my face off and on throughout the day. No vision oroblems tingling sensation going up and down legs and legs feel stiff. Breathing feels like its hard to takw deep breaths. Wjen swallowing feels like food is getting stuck in my throat a lot.

    #109351

    GH
    Member

    Danmanca, you still have not said anything about reflex tests. I think you need to see a neurologist as soon as you can.

    #109352

    danmanca
    Member

    Ok, thanks for your help. I was in urgent care last night due to breathing issues. Throughout the day I’m feeling light headed and hearing ringing sensation in my ears. They ran a battery of tests and didn’t find anything. I informed them of the heaviness in my legs and shortness of breath. They are getting me a referral to pulmonologist and neurologist. I don’t want to have to go back to ER/urgent care because they don’t seem to find anything wrong and I don’t think they know much about GBS. I mentioned it to the Urgent Care doctor and he didn’t seem too concerned. Would numbness and tingling be constant with GBS? It seems to come and go throughout the day. I’m wondering if its also a good idea to follow up with my PCP as I’m not sure how long it will take to get appointments with these specialists. Checked my knee reflexes and all seemed okay. Does anyone know a good neurologist in San Diego, CA? I’m hoping because referral came from Urgent care center it will be faster. I also have a history of anxiety so I’m not sure if that is playing a roll. Thanks again for all the answers.

    #109353

    GH
    Member

    Ok, but is your knee reflex normal or not?

    #109354

    JudithKay1
    Member

    I have life-time issues with anxiety as well.

    I am from the Chicago metro area so I don’t know anything about the California hospital system. When you go to the ER are you going through the University of California/San Diego? Here is a link to their neuro department: http://health.ucsd.edu/specialties/neuro/Pages/default.aspx

    Here is a link to the webpage’s description of GBS from the University of California/San Diego webpage: http://myhealth.ucsd.edu/85,P00782

    Keep us posted please.

    Judy

    #109356

    danmanca
    Member

    Yes, knee reflex was normal. I was not going to UCSD but to Scripps Mercy hospital for urgent care. I don’t believe UCSD has an urgent care center. I was referred to both docs as stated above but might call back to my PCP tomorrow anyway as I might be able to get in to see him sooner. Thanks again for all of your help.

    #109359

    Jim-LA
    Member

    Other forum members have reported good GBS/CIDP diagnosis and treatment from The Neurology Center http://www.neurocenter.com by Dr Gregory Sahagian. He is also Chief of Neurology at Tri-City Medical Center in Oceanside (which has an ER).

    You can contact the GBS-CIDP liaisons in San Diego for additional referrals:
    Julie Jukich
    619 218 6033
    – Or -
    Liz Russell-Parker
    619 750 8778

    #109398

    danmanca
    Member

    Thanks again for all of your help. I’m going back to my PCP mondayand also to see a neurologist this week I hope. I’m also scheduled for a swallow study with my ENT on Thursday as my initial problem started as a swallowing/sore throat issue. I think because my throat is feeling so tight this could be causing many of my breathing issues. Initial onset of symptoms started late November/early December so it could be nerves getting to me as well for dealing with this so long. Hopefully after the swallow test and meeting with Neurologist/PCP we can track it down. Thanks again for everyone’s help on this forum and for pointing me to some great resources. I really appreciate the time.

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