Do I have GBS?
AnonymousNovember 13, 2006 at 8:58 am
My Story begins on Apr 16, 2006 when I came down with a severe sore throat that lasted about a week. During this time I noticed a strange weakness in my legs off and on. On 23 April was prescribed an Antibiotic. On the 24 April had to call an ambulance, I felt as though I couldn’t take a breath, and had difficulties breathing. Had ECG, blood work, – breathing settle down as I lie on the stetcher for a couple of hours. It seem to come in waves. Was asked to walk around, After a couple of minutes my hands and feet were numb and I couldn’t catch a breath again. Had CT was told chest was normal and was sent home. Apr 26 back in Emerg with shortness of breath and weak legs, told I was hyperventilating. Sent home again. Because the CT ruled out lung pathology they decided to concentrate on my heart. All chest tests during the next couple of weeks were normal. They then decided to send me to an ENT doctor to see why I was so hoarse and if there was a correlation to the breathing difficulties. Discovered enlarged base of tongue on May 30 – was put on Prednisone and Cefzil. These made my condition worse and upon seeing another ENT – discovered this enlargement was normal. Was unable to eat at times, had difficulty swallowing. Legs are very weak. Still have recurrent episodes of breathing difficulties. I will just be lying there and all of a sudden I feel strange in the chest, numb hands, feet, difficulty with breathing as if someone is standing on my chest – when I tried to get up and walk during one of these episodes my legs actually collapsed- bringing me back to Emerg on 7 Jun. Have heart palpitations regularly – although I know there is nothing wrong with my heart. Had severe attack on 19 June – heart raced out of control – hands and feet were numb and couldn’t stand up or walk. Had EMG/NCV – normal except for long F waves – do not know what that means. Had MRI normal. In July/August eye sight became worse despite normal test in April 06 and two previous corrective Lazar surgeries – 4 years prior. In September had to get three pairs of glasses, reading, computer and long distance. The neurologist I saw in Emerg said she suspected I had post virus syndrome. Six and half months with no answers, breathing is still difficult, sometimes just on rest, all the time on little exertion. Legs are weak, achy, walking is slow and awkward. Still get numb hands and feet. Of Note I had a flue shot in November 2005 as well as Hepatis A,B,C in the last two years. Any advice would be greatly appreciated.
AnonymousNovember 13, 2006 at 11:30 am
I am not sure what is meant by Long F Waves but in the case of GBS the F Waves are often absent. The description that you provide of how these things seem to come in episodes seems strange because with GBS it doesnt come and go like that. The breathing you are describing could be anxiety and the heart palpitations would support that as well. It is possible to have a post virus condition as explained and with the stress and worry can trigger some anxiety.
That being said…
The EMG/NCV are the telling signs along with a LP. A Neuro is the one who will make the diagnosis of GBS/CIDP so if you are not confident in the diagnosis you have been given to date, I would go to another Neuro, tell them your signs and the request an EMG/NCV and get his opinions on a LP. Tell him/her your concerns about GBS/CIDP and see what they say. Symptoms can range a lot for GBS/CIDP but the fact that you have this in episodes makes me think it may be something else, but I am of course no substitute for a doctor.
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