Does this sound like GBS?

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.

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?

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.

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.

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.

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

Ok, but is your knee reflex normal or not?

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

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

GBS reaches its maximum progression in eight weeks or less, by definition.

Although GBS peaks in a relatively short time (couple months), a return to post GBS abilities will take considerably longer. Many report still having some GBS symptoms years later. When the symptoms do not clear up sufficiently after a year or so, most doctors would consider it CIDP. There is another, much rarer, form of GBS called Recurrent-GBS (RGBS): http://www.ncbi.nlm.nih.gov/pubmed/18931012