Advice please

Hi there everyone.

I would greatly appreciate some advice…mainly because I’m up late (Almost 2am here in the uk!)…feeling unusually panicked about my recent symptoms…

Last Monday I had a major headache, neck stiffness and ringing in my ear all on the right side, and as the week wore on dizziness also came on. Took a few days rest but it didn’t shift. On Friday of that week I woke up and realised that half my tongue (left) was numb and my gag reflex had also gone on that side making swallowing and eating a challenge.

I headed to an out of hours GP who suggested middle ear infection or Bells Palsy. By Monday this week there was no improvement but also no ear symptoms so went to see my own GP. He was a little confused by such a wide range of symptoms but called local A&E for urgent referral and they agreed so headed straight down there…

So Tuesday Am after normal bloods & CT and a night in hospital they arranged an MRI for Thursday (tomorrow) and discharged me after I explained today (16th) was my birthday and I had 3 children desperate to see me!

However…since returning home I was awoken by what felt like dead legs on Tuesday night…that has gradually got worse over the past 24 hours…weakness, tingling, loss of sensation and no pain when I pinch but I still have some feeling. Hands and arms are similar but not quite as bad. I would like my legs to when I was coming around from an epidural following a c-sec, only getting worse not better.

I guess I’m asking for some advice on previous experiences of the onset of GBS (the tongue and gag thing seems unusual) and also how likely the MRI will be to pick up GBS, and finally I guess how much I need to push for spinal tap if MRI clear?

Oh, also to mention I had Hodgkins Lymphoma in 2005. But have had no obvious infection or illness preceding these recent symptoms.

Thank you so much.


Any news today, Rachel? Did you head to the hospital, and have you gotten tests? I hope you are okay.

You should definitely push to have the lumbar puncture. It really sounds like you gave the signs for GBS. Better to have the lumbar puncture come back negative than to wait and miss the chance to start treatment early. Good luck to you. X

I do recall having a spinal tap early on. Possibly, insist on it. I "think" that was how they decided I had GBS. Early treatment is very important.

Blessings to you and your family. You are MOM - and your kids love you dearly - along with your husband. I hope things get better for you real soon.


I had a spinal tap, MRI , etc. but the
Big thing, for me, is that I had a nerve ending test and that was the determining test for my GBS diagnosis. It is now 15 monthes later
and I am getting better and ambasically functioning basically functioning again…
A plasma exchange was the treatment that put me on the road to
recovery. Make sure you are seeing
a good neurologist!
Good luck, hang in there and keep asking questions.

I also had the plasma exchange - I believe it was called Plasma Phorisis. I received 10 of them.


Hi Rachel. Hope your are better already. I don't think MRI is to diagnose GBS, it's more like checking for other unseen issues that's causing the symptoms. The other thing my daughter's doctor did when she was admitted to hospital was nerve conduction test. Another very simple test is just the leg & arm reflex. Spinal tap is the most reliable to diagnose GBS, GBS has unusual high protein counts. But even so, my neurologist only ever said she's 99% sure it's GBS in my daughter's case. An experienced neurologist would be your best help. Hope you have the right diagnosis & treatment soon.

Hi Rachel, I didn't ever have a numbness in my mouth until very late in the GBS when diaphram started to go, which it never shut down thank heaven, but yes I had Bell's palsy although it didn't go numb,y face just drooped one morning as I was looking in the mirror. Get to a neurologist quickly, MRI doesn't show GBS, only Spinal tap can give the protein count. I also had nerve conduction and EMG's. I also had a lot of pain in my spine, all over my back, from the myeolin sheath deterioration. I had immunoglobulin which worked quickly and effectively. I am virtually symptom free now except for a little tingling sensation in nose and lips and bottom of feet. My advice, don't fool around see a neurologist soon and ask for tests. Especially the lumbar puncture. Good luck and I pray that it is only a little virus that has you down and not GBS.

The symptoms sound roughly like my sisters as GBS was c

oming on. My biggest fear with GBS is the breathing issues. It is so scary as the patient becomes unable to breathe. Please please please if you even hVe a comcern about your breathing push to stay at the hospital. The breathing seems to stop quickly.