GBS and Bell,s Palsy at the same time
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August 25, 2009 at 1:11 pm
I am 63 years of age and self-employed – I have a small signwriting business which I run on my own in Sabie – a small town near Nelspruit in South Africa (that is close to the Kruger National Park).
I am married with 6 children and 7 grandchildren.
My wife has a small hair-salon which she also runs by herself.
I am (was) healthy for my age and very active. I went from this to paralysed in a matter of a week.This is My Story,
About 4 weeks ago I started to feel a tingling and numbness in my hands and feet. When it persisted we thought it had to do with diabetes.Then my legs got weak and I started to feel off-balance – hands and feet became numb.Sunday we went to church and I could mange to shuffle along and stand.
On Monday 10th August it was a holiday and we decided to visit the local Horsehoe Falls – this entailed a short walk/climb up the mountain – perhaps 200 metres.Well I barely made it up and back down again! I was so weak and off-balance and we realised something was seriously wrong.
On the Tuesday 11th August we drove to Nelspruit to see our GP.He tested for sugar and said it was not diabetes – he checked me over, gave me Prednisone and a prescription for vitamin supplements and sent me home.We were so relieved I did not have diabetes!
But the relief was short-lived.
It just got worse and on the advice of a friend we went to Nelspruit Medi-Clinic ER.on the Wednesday 12th August.
On the way the right side of my face started drooping and now we were thinking stroke – I was in deep troule!.
At Medi-Clinic the intern in Emergency did some tests and observations and it was not long before he diagnosed Guillain Barre Syndrome.
The face, he said, was due to Bell’s Palsy – not the GBS – caused by pressure or damage to the facial nerve and not dangerous. At this stage my face was giving more problems than the GBS – decidedly debilitating as I could not speak, eat, drink or see properly..
They said the 2 conditions are not related except for fact that both affect the nerves.
I was admitted to hospital and the Specalilst Physician that evening confirmed the initial diagnosis
Blood tests were done and a MRI brain scan but everything was normal. I was however becoming weaker by the minute and walking was a big challenge.The face was not good either as I could not smile, frown, close my eye, drink or see properly.
I was not given a drip and my only medication is Prednisone for the Bell’s Palsy. They considered putiing me in ICU but the doctor was against it because of all the bugs that live there.(Ithink he knew we could not afford it).
All this time I have felt no pain whatsoever – just the incredible weakness in my limbs, the numbness in hands and feet..My balance is totally off and I have loss of motor skills in my hands and fingers.I can not even unscrew the cap of a medicine container.
I insist I want to keep moving myself with the aid of a walking stick, chairs, tables and walls for support – I do this at home as well but walking is extremely difficult and incredibly tiring. I must however never give up!.
The doctor could see my stress as we have no medical aid and had to get by with the little extra I had earned recently. Ironically I do (did?) the signs for Med Clinic for some years now and this got us through the initial expenses.
Also in this country there is no medical benefit to speak of and you want to stay away from Govt. hospitals where the situation is chaotic!! We have to depend on private hospitals and medical schemes and our own funding – aqnd boy are they expensive!So after 4 days in private hospital I was sent home and here I am writing this on my laptop.What a God send the computer and Internet is – I feel I am not alone and can reach the world although I am sitting in my bed.
What is worrying me is that the last couple of days the legs have shown no improvement and feel weaker now than before.
Walking at this stage is limited to a few steps and I have to rest – the balance too is getting worse. Did I overdo the activity and walking the last couple of days out of hosspital? What about physiotherapy – when should I start that? I need to le3arn everything I can abot this condition – sometimes I get just plain scared when I think about what I am facing.I am thinking of the future – I know this thing can take months, even years and at my age tme is precious – I also need to make a living – so some big decsions need to be made, everything is just so confusing as this has happened so fast!
One thing I know for sure – that this is a serious condition and will have life-changing consequences for me and my family.
Finally and maybe firstly – I thank and praise our Lord – who was and is with me every step of the way and has already undertaken wonderfully to care for me – I know that He will make way where there seems to be no way!
Also wonderful is the way family,friends and church are supporting me and praying for me.
Most wonderful is my wife, Elsie, who does everything for me with unquestioning love and dedication, who hides her concern for my sake and without whom I would be unable to do anything – truly the Lord sent me an Angel for a time such as this.
The fact that I am already at home and experiencing no pain just shows that He is already answering our prayers and there is more to come!
P.S. Hats off to young Dr.Jooste at Medi-Clinic who diagnosed 2 relatively rare conditions spot on, without the benfit of tests
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August 25, 2009 at 2:01 pm
Hi there.
It sounds to me like you do not have Bell’s Palsy but a variant of GBS called Miller Fisher Syndrome. It is very possible to have Guillian Barre Syndrome & Miller Fisher Syndrome at the same time.
Here is a link describing MFS:
[url]http://neurology.health-cares.net/miller-fisher-syndrome.php[/url]If you do have GBS the VERY last drug you want to take is steroids. Steroids make GBS worse, which could be why your symptoms exacerbated after taking it.
I’m not sure what treatments are available in Africa but here, in the USA, you either get IVIG or plasmapheresis.
Here are links to both…
IVIG:
[url]http://www.nbngroup.com/blog/2008/05/21/what-is-ivig-and-what-does-ivig-treat/[/url]And plasmapheresis:
[url]http://www.wisegeek.com/what-is-plasmapheresis.htm[/url]If you are still taking the steroids I think you should stop, do your research & then contact your dr’s.
Good luck,
Kelly -
August 25, 2009 at 3:58 pm
Hello Kelly,
We did think it strange I should have these 2 apparently unrelated conditions and on checking symptoms for MF I do find some things fit, such as the tingling in my face and upper arms which started a few days ago. I also have vision problems and of course the aggravated weakness in my muscles and poor balance. It fits. It appears the IVIG is the way to go – the treatment is known here.
I researched a bit on the Prednisone which was intended for the Bell,s and it appears that there is no benefit on the whole from taking it – tests show no improvement and even some risk of relapse.
I have cancelled my doctor’s appointment for tomorrow and will stop taking the steroids until we have an idea of where to go from here. We certainly need to find someone in South Africa with experience in this.
It appears that there is something to be said in favour of this as my symptoms are still mild when compared to others.Thanks for the advice and info.
Will keep you guys posted.
Will include Emily in our prayers for full remission!
Regards,
Martin
P.S. I better get well – these days I am a real push-over!
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August 25, 2009 at 4:17 pm
I think you should still go to the dr’s appointment. Print any information you find on MF and GBS to give to him. Maybe he will be receptive. You never know until you ask.
Call your local hospital to see if they have anyone experienced with GBS and MF or if they can point you to someone who may know of one.
Have you posted on the UK support group website? They might have members who are a little closer to you than we are & they might have more information for you on where to find a dr.
Here is a link:
[url]http://www.gbs.org.uk/index2.shtml[/url]
Good luck,
KellyPS, Emily did a report on African Lions for school (her favorite animals) and Kruger National Park is beautiful. We looked at many photos & both agreed we would love to visit there one day. You are very lucky to be so close by.
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August 25, 2009 at 6:14 pm
Hi Martin,
I’m sorry to hear about your ordeal, but what a blessing that you were diagnosed fairly quickly.
I had GBS and MFS almost two years ago. It started for me with my vision being “off” (on it’s way to double) and tingling in my fingers. It eventually moved it’s way down. I had GBS in that my autonomic nervous system was affected the first couple of weeks (my heart rate and pressure was very low), and I had a little bit of weakness in my arms and legs. But the MFS was much more prevalent.
After my vision went fully double (by the second day), the right side of my face started to droop, just like you said happened to you. I was admitted to the hospital, and by the 4th day, I was given plasma pheresis. At first they gave it to me every other day, but as soon as the left side of my face became paralyzed, they upped the treatments to every day. All in all, I think I had 16 PP treatments (over a 5-week period).
In my case, I was not a candidate for IVIG because I had low IgA (a protein that protects your mucous membranes, e.g,. from colds and viruses – which I didn’t even realize until they tested me!) – and there is a risk of going into anaphalactic shock if your IgA is so low that it’s built an antibody against IgA (which is in IVIG). But I believe both are supposed to be equally effective.
Like you, I too could not smile, frown, or drink, blink my left eye, or close my left eye. One thing I didn’t find out until I came out of the hospital and went to an opthamologist is – you should ask for tape to tape your eye shut – so it doesn’t dry up. They have tape that won’t rip the sensitive skin around your eyes. Also, ask for eye drops to keep your eye hydrated.
Is your vision double? You indicated you have trouble seeing properly. If so, ask for an eye patch. That will help.
I had sensitivity to light. If you have that, you’ll naturally know to keep out of bright light.
Lastly, don’t fear – everything will come back. It may take a little while, but your smile, blinking, everything will return. It has for me.
If you’re able, physical therapy will help. And they have this procedure called electronic stimulation that helped to bring my facial movements back.
Just don’t push yourself. Rest when you need to.
I’m wishing you the best in your recovery.
Paula
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August 26, 2009 at 7:14 pm
hi paula,
thanks for the post. the face is doing well and there is only slight droop remaining. only my eye remains affected and wont close properly, cannot wink but i dont need patch and i use eyedrops regularly. cannot imagine what the double vision must have been like, my vision still slightly blurred and my face feels tingly when i do strenuous activity.
what worries me most is my legs getting weaker every day and now i cant walk more than a few steps and it buckles.
but overall i feel it could have been much worse.
thanks for the advice and good wishes.martin.
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August 26, 2009 at 8:52 pm
Martin,
Don’t go off the prednisone abruptly! Granted you have only been on it a short time, but better to be safe than sorry. You need to wean slowly or there can be side effects like precipitating diabetes. Also, prednisone would be a fairly standard treatment for what you are experiencing so staying on them until a doctor advises you is the best plan. [url]http://arthritis.about.com/od/prednisone/f/withdrawaltaper.htm[/url] Good luck.
Laurel -
August 27, 2009 at 2:30 am
hi laurel,
thx for the advice – you know I couldn’t sleep well last night and i was just sitting there contemplating all these events in the early morning hours – I have so many questions and so few answers.
While I was sitting there praising Jesus for the many blessings amongst all the negative aspects of my condition, it was as if He said I must just continue with the medication, which I did. I only missed one dose, so I reckon no harm done.
This forum is a great blessing to me and a source of strength and solace knowing there are others who are and have gone through this and have beat it.God bless –
Martin
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August 27, 2009 at 11:05 am
Since my symptoms are getting worse – face tingling, tongue numb, legs now very weak, arms and hands numb and tingling, loss of co-ordination etc. – I decided to visit our local GP for advice and treatment for this cold which is making life unbearable.
I told her the whole story and our suspicions regarding the Bell’s being MF and even possible DICP.
She wasn’t told why I had made appointment and I was surprised to find out that she knew of all these conditions – she had also previously treated patients with GBS.
After doing an examination and tests she said that it was possibly not GBS at all as I did not exhibit all the classic symptoms – she also ruled out MF and CIDP and that I never had Bell’s Palsy either.
All very puzzling as the MRI brain scan showed no problems at all.
The upshot of all this is that I will be seeing a neurologist in Johannesurg soon to find out what is wrong with me.
So we will keep praying for good news.Martin
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August 27, 2009 at 9:47 pm
I think a lumbar puncture would confirm gbs…. an emg or ncv test would help.. Also, how are your reflexes.. I was in unbearable pain with my initial onset of gbs… be careful about going off meds without doctors knowing, i.e. prednisone, as I think you ween off the meds… keep us informed, and please keep after your doctors for a proper diagnosis….
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August 27, 2009 at 10:27 pm
Hi Martin,
My husband had a long saga getting diagnosed with CIDP. I would seriously question whether your GP could accurately rule out GBS or CIDP with just an office exam–darn near impossible to do this without more testing such as EMG, nerve conduction studies, lumbar puncture and blood work. And over the years I have certainly learned that the way each person presents with symptoms of GBS and CIDP varies from individual to individual. None fit into a cookie cutter presentation. Keeping that appt. with a neurologist is critical–if it is a month away or so keep phoning the office and ask for any cancellations with the hope of getting in early. My prayers are with you. And if things get worse, go to the hospital please.
Laurel -
August 28, 2009 at 6:56 am
Martin,
Is there any type of financial aid in your country so that you can have the necessary test done and get a for sure diagnosis? You have been given some wonderful advice from the people of the forum that has saved you much $ but you still need a few tests so that you are taking the correct medication, etc.. Please ask around when you go for doctors appts so that you can find out about financial aid. I love to hear about your faith. When you realize that Jesus is all that you have, then you realize that He is all that you need!
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August 28, 2009 at 9:07 am
Hi Martin,
Your symptoms are reminiscent of when I came down with the Miller Fisher Variant of GBS. One thing you didn’t mention is your ability to swallow. Be careful when eating food so you do not choke. I had double vision, right side facial paralysis and couldn’t swallow. The paralysis continued down my body until I couldn’t stand at all or lift my arm (mostly affecting my right side). If your GP ruled out GBS, etc. did she say why? Seeing a neurologist is key. I had IVIG treatments and lots of physical therapy during my 2 month hospital stay. I am well into recovery now but my knees still buckle at times, mostly if I am tired. You have to do things in moderation and rest when your body tells you to. I will keep you in my prayers. I hope you get a clear diagnosis and treatment plan.
Diane -
September 10, 2009 at 7:57 am
Hi all,
It’s now almost 3 weeks since my last post.
It feels like 3 months considering all I have been through. It is actually now only 6 weeks since my symptoms became really severe.
2 weeks ago,at the request of my daughter,we consulted a doctor who practises electro-acupunctue and analysis – she said she treats the body and not the ailment and I was put on various medications as indcated by the electro-analysis.These are dispensed orally by means of spray pump bottles.The medication is mostly colourless and tasteless.
The names on the various bottles are unknown to me – Gesenium, Causticum, Cocculus, Arg. Nit 30C, etc.
My daughter swears by this treatment so I am doing it for her sake, although to be honest I am sceptical.Last week I started developing a tightness in my chest and fearing possible respiratory problems we called in our GP. After checking me over she could see no immediate respiratory problems. She wanted to test my spinal fluid and we decided I be admitted to our local hospital for a lumbar punch and to monitor for possible respiratory problems.
She said the lumbar punch should have been the first order of business when I was first diagnosed with GBS but instead an MRI scan was ordered!
The lumbar punch was done and the result was as expected – no abnormalities (this was due to the fact that GBS would have only shown if tests had been done early on)In any case this was good news as CIDP now probably ruled out).
I was out of hospital after a 3 day stay.
Based on my progress we decided to cancel the neurologist as it would have involved travelling some 1000km and incurring some major expenses not to mention how exhausting prolonged travelling in a vehicle is for me. In any case all tests so far done have come up normal !
I have been at home another week now and things are steadily improving. I feel I am slowly regaining the use of my limbs and motor skills – yesterday I even manged to walk a short distance without my stick.
The hands and fingers still feel numb and the tingling sensation has not abated – the fingertips feel strangely smooth, like plastic and there is no grip.
The legs feel a bit stronger and there is more movement in my toes – but the feet still feel like blocks of wood.
My eye closes OK but I still cannot wink – it also gets irritated after prolonged outdoor exposure to bright light. I use eye drops frequently to soothe the irritation. My vision is still a bit blurred but this is mainly due to the eyelid drooping.
Sleep has become a big problem due to Restless Leg Syndrome, which I had before the GBS but has now become worse.It comes and goes but only at night – so I take whatever rest I can and go to sleep as late as possible.
I have still not experienced any pain throughout my ordeal and my appetite has not been affected – I have also not experienced any weight loss.
I have weaned off the Prednisone now and stopped altogether 2 days ago. Maybe this is why I feel so much better ?
The head cold and cough I developed on returning from my first hospital visit finally seems to be getting better as well.
All in all the prognosis looks good and I thank God for my progress and the relative mildness of my symptoms.
Martin.
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