Could this be GBS
AnonymousMay 20, 2007 at 9:10 am
I live in Australia and have just been to hell and back. I went to 7 doctors, and one neurologist 3 times as well as emergency at the hospital, and no one believed I was ill. They kept saying I had anxiety as I have 3 kids and a job and was turning 40.
Before Christmas I had a really bad cold, really sore throat, lost my voice, really tired etc. Put it down to a normal virus
Despie this at Christmas I was thinking I was the happiest and luckiest person I know.
I was hoping someone could read my story and let me know what you think.
I warn you it is very very long, but I will try and put it in point form to save time.
12th January I was in Queensland having a great holiday
I woke up and said to my husband I don’t feel right. He said how, sick, want to vomit, tummy ache etc.
All I could say was I didn’t feel right, I didn’t know myself, I just felt wrong.
Later that day things started happening.
1.I started getting electric shocks in my right thumb, a bit later in my right fingers, then my left thumb and fingers. My R thumb actually twitched with each shock
Over the next week the following occured
2. Hands started trembling
3. Lower legs got “fizzy”
4. Exhausted but couldn’t sleep
5. Was only comfortable lying on the floor flat on my back
6. When I did sleep I had really vivid dreams – like hallucinations
I saw a doctor who said I had anxiety, I asked for a referaal to a neurologist (I thought I had parkinson’s or something)
7. My feet went numb, but I could still feel them (i hope that makes sense)
8. Legs went numb if raised or crossed
I saw a chiro at this stage and told him about it. He did a couple of things and said
9. I have diminished leg reflexes
10. I have a saccadic flicker in my right eye
He told me to tell my doctor. I saw the neurologist and told him all of the above. He wiggled his fingers to the side of my head and said how many fingers am I wiggling (two) can you do this – he made his hands quack like a duck (I could) Watch my pen (once across from right to left so fast it was over before i even had a chance to look at it)
He said there is nothing wrong with you you have anxiety.
Still the 2nd week
11. I had shingles at 15 and it felt like they had come back without the sores (they were across my right shoulder). Felt like someone was holding sparklers against my skin
12, Bad shoulder pain especially right side
13. right arm and hand went numb
14. left hand and arm went numb when raised
15. hurt when people touched me gently or when a tag or seam was rough (like when you have the flu)
16. Effort to move arms and legs
17. Getting more and more exhausted
18. Bottom went fuzzy
19. Couldn’t feel my “Favorite” nerve in R arm, just below the elbow (I have always played with it since I was little as it made my little finger tingle.
20. I could always feel my heart beating in my chest
Went back to neuro, told him about the extra stuff. He pressed in my arm and said does that make your little finger tingle- I said no. Another spot he said does that make your thumb tingle – I said no. He refused to do any other tests including my leg reflexes and said there is nothing wrong with you all you have is anxiety.
By this time I felt awful, I was telling people “My body is stopping” nobody believed me (except my mum my husband and a few wonderful friends) I thought I was going to die, and I was thankful for it, because I was in hell.
Next week (Week 3)
21. My heart started missing beats
22. My heart was back to front (ie fast when lying down – slow when moving around)
23. My blood pressure was really low (I had seen another couple of doctors and they all took my B/P. Each time it was lower – they said it’s good to have low blood pressure (lowest was 82/58) I said it wasn’t good if it wasn’t normally low.)
24. My heart started to only go slow. Couldn’t even get it to go fast
25. I wasn’t sweating properly (only sweating under my boobs and down my spine)
26. My eyes kept opening when trying to sleep (not springing open, just opening slightly) I couldn’t feel this I only knew as my 4 year old sleeps next door with his lights on a dimmer and a bit of light comes into my room and I realised I could see.
27. I was having body jerks (day at night but mostly in bed), however by this stage I was in bed 21 hours a day – 1 hour to have a shower (lying on the floor) and get dressed, and 2 hours to act as normal as possible for my kids sake (while lying on the coach). My husband had given up work by now as I could barely walk from one end of the house to the other from exhaustion, and numbness.
28. My brain had stopped working – everything was fuzzy, It was too hard to make decision due to exhaustion)
29. Started to fall over when trying to walk
Went back to the neuro – I asked him if he could do any tests, neuro exam etc – he said no nothing wrong with me – I have anxiety/depression (I said it wasn’t I was worried/frightened, and that was completely different)- he said the jerks are called myoclonic jerks and were nothing to worry about
Went to emergency, they said they weren’t there to treat stuff that was already wrong, I said I need to be in hospital, they said then I will have to see my doctors (all this happened with me crawling around on the floor as I coudn’t walk as I was falling over and was exhausted)
At this stage I decided I would go home and just wait to die – I knew it was coming soon – and it couldn’t come soon enough by now. (I knew these thoughts weren’t from depression though, I was just sick and exhausted)
I would cry and pray each day to god to please let me die
29. I got orange spots (like large freckles) all over my legs
30. My wee went brown
31. My faeces went yellow
32. My food wasn’t being digested
33. I wasn’t weeing enough for what I was drinking
34. I had stabbing pains in my livver
35. I couldn’t feel if I was hungry (could hear it growling but not feel it)
36. Couldn’t feel if I needed a wee, just went every few hours
37. Started to leak urine – neede to wear a sanitary pad
38. Veins stopped working (Blood seems to be pooling in my hands and feet if I ever managed to stand up – the veins just got bigger and bigger till I tipped them the other way (my veins are normally not noticeable even with my hands down)
39. Was having trouble swallowing – especially if I lay down
40. At night I had to sometimes make myself breath as it felt like my lungs were stopping (even though I was almost always in bed)
41. My arms/legs/body was numb / didn’t work (but not like being paralysed) and heavy like lead
Tried one more doctor – he said ” I dunno mate, sounds like your in a bad way”
This was mid Feb – 4 weeks after it all started
I was like this for about 10 weeks – hell would be pleasant after this – the worst was that I couldn’t get an answer, and that the doctors didn’t believe me (obviously there had been a lot of tears / fear / anger / frustration by now, but I knew it wasn’t anxiety)
Then a miracle happened – about three weeks ago it all started to go in reverse, (ie the last things to happen started to get better)
I was in such a bad way that I don’t think I noticed at the time, it is just looking back that I realised it had happened.
Then last Saturday – 8 days ago -I woke up and for the first time in 12 weeks I didn’t think why didn’t I die (felt about 10% better)
On Sunday I woke up and was able to go out for Mothers Day Lunch (about 50% better)
On Monday one week ago I woke up and felt about 75%. I hadn’t told anyone till then as I was too scared it wasn’t actually true
Now I feel 90% better – my feet are still a bit tingly, my right shoulder (where I had the shingles years ago) is still painfull, and my legs go numb if I sit on a hard chair for too long, I am also extremely fatigued, but my brain came back – and so did my favorite nerve.
At my lowest I was thinking even if by some miracle I get better I will never be able to function normally, as this has been so traumatic, but I feel perfectly the same as I did on Christmas Day.
I do think that everyone should look death in the face, as I seem to love the important people in my life a little bit more than I used too, even my children, and I already loved them so much it hurt.
Anyway when I got better I obviously came looking for answers, and I am no doctor, but it was obvious I was sick
I came across GBS and it just seemed to make sense
I was reading KarmaCats story and it sounded like me – I said to my husband – listen to this and read it out to him (I changed the age and left out the bits about being diagnosed)
When I finished I said who was that about.
He rolled him eyes and said “you of course”
If anyone is still reading (I warned you it was long) can you tell me what you think. Could this be GBS, if not does it sound familiar to anyone.
I would love some input, and even if it’s not GBS I know that everyone here will believe me as it sounds like there have been some pretty traumatic experinces going on – way worse that mine !!
I look forward to hearing from someone.
Thankyou for your time 🙂 🙂 🙂 😉
AnonymousMay 20, 2007 at 11:35 pm
Parts of your health problems sound like they could be GBS, like the numbness, fatigue, weakness, tingling, etc. Also, the time frame going downhill, reaching bottom & then getting better sounds like GBS. But the parts about the heart problems, blood pressure, lack of control of urine, color of feces, & many other symptoms do not sound that much like GBS. It is possible that you might never know what you had, but just feel doubly blessed that you seem to be better now. I would guess it was something neurological though, & I am so sorry about the treatment you received from all of those doctors.
AnonymousMay 21, 2007 at 5:42 am
First of all, I’m an Aussie too .. not too many of us on the forum. Where abouts are you? I am in Qld but originally from Melbourne.
Second, what you went through with the doctors saying it was anxiety etc is pretty common – unfortunately. The symptoms can be so vague and GBS is so rare that i suppose you cant blame them but when you are thinking the worst you just want someone to tell you what is wrong. I had pins and needles in my hands (spreading up my arms) double vision and slurred speech. I also live in a small country town so no neuro at the local hospital. Luckily a speech pathologist was called in and she knew something was wrong so i got an appt with a neuro the next day who diagnosed me straight away … by taht stage i was unable to walk so they knew something was wrong.
I agree, a lot of your symptoms sound like GBS. there are a whole range of textbook symptoms but no one textbook case – different people have different combinations of symptoms. The things you mention that fit with what i have read or experienced personally about GBS are:
illness 3 weeks prior to onset of symptoms
electric shocks, trembling, fizzy feelings
pain (although i never experienced this i have heard it is the worst pain!)
sensitive to touch
difficulty swallowing / breathing
unable to shut eyes completely
reaching a plateau after about 4 weeks
from what i have read, even without treatment people will recover after a period
last things to go are first to return
loss of reflexes
I am no expert but these are things that you mentioned that sound like possible indicators of GBS
I was diagnosed from my symptoms but had a lumbar puncture done which confirmed high levels of protein … unfortunately the results didnt come back for a week so i had already been treated for GBS by then but still it was nice to have it confirmed scientifically. As far as i knowthe only other way to confim GBS is by a nerve conduction tests but if the nerves have repaired themselves to some degree then this is probably not going to be very useful now either.
I was lucky that i ended up in a hospital that had seen GBS before and i was diagnosed and treated quickly (and this is a public hospital in rural queensland!) Maybe i was lucky that i did go downhill so quickly as maybe they wouldnt have taken me seriously otherwise (i was in a coma within 48 hours) I spent 5 weeks in Toowoomba (4 in ICU) before coming back to my local hospital and saw the same doctor – who readily admitted he thought i was just being hysterical! Not that he apologised for not believing me though. Sometimes you just have to trust that you know your body best.
Anyway, you seem to be on the road to recovery now and i hope it continues for you. If it is GBS, there is a good chance you will continue to suffer from residuals as recovery is a long and ongoing process, so dont panic if you are not 100% straight away.
AnonymousMay 25, 2007 at 11:19 pm
Good News !!
I saw a wonderful doctor today.
I told her that I think I know what I have had, but I wanted to know what she thought, and if she didn’t think anything after my story, I would tell her what I thought it was.
Anyway, I went through my full story, she asked a couple of questions, busily typed it all, asked what feelings I had now
I think it is fairly obvious that you have had a condition called GUILLAIN BARRE !!!!
I could have kissed her !!
She said she can’t believe my neurologist missed it, but often they get something in their head (in my case anxiety / depression) and then they can’t get it out 😡 !!
She said it is too late to do a LP, but we can do some other tests that should almost guarantee it.
She took blood to test for something (can’t remember what)
She said I need to have a nerve conduction test, and also something to do with my blood sinking in water ??
She said these tests would also rule out CIDP as there is a small chance that is what I had / have in which case it would be important to know !!
It is so nice just to be able to say “I have had GBS” instead of “I have been sick but I don’t know what I had” 😀
AnonymousMay 26, 2007 at 5:25 am
That is fanatstic news … just to know that someone believes what you are going through is real is so reassuring!
Not sure what the blood tests / blood sinking in water is. I know the presence of certain antibodies can lead to diagnosis of certain variants.
If it is CIDP they can give ongoing treatment which is probably why they want to double check if it is CIDP or not.
AnonymousMay 26, 2007 at 8:30 pm
I’m so glad you finally got a diagnosis. Just being able to put a name to all the frightening things you’ve been experiencing is very powerful. I know what a relief it was to finally know what I was dealing with, even though the diagnosis itself was a bit frightening. At least knowing what I had, I could research and understand what was happening to me, and I knew what questions to ask. Fear of the unknown was much worse.
There’s nothing worse than being told your problems are psychological when you feel that your body is shutting down on you. There was a time that I honestly thought I was going to die because the doctors weren’t taking me seriously and kept sending me away, while I knew in my heart that if I didn’t get help, I might not survive what was happening to me. To finally be believed… That was everything to me.
I know that this is a bit late in coming for you, and a diagnosis while you were in the midst of the crisis would have been preferable, but better late than never, right? At least now you can be monitored and cared for properly in the future.
Welcome to the board. I’m happy you’re here. 🙂
AnonymousMay 26, 2007 at 8:47 pm
Thanks guys for the nice comments – I am glad to be here too (sort of 🙂 ).
I remember a bit more about the blood through water test, I don’t know if she even said that or if that is what I imagined when she said the name of the test, but it was “something ??? sedementary rate”
Your right KarmaCat, I thought I was dying and nobody cared, at least if I knew what I had I would have know that no matter how bad I got, I was going to get better – be it 3 months, 12 months, 5 years.
I shudder to think what I may have done if I didn’t have my wonderful family and friends – especially my kids around me.
I have enough prescriptions for 200 zoloft, 250 Inderal, 90 valium and 45 sleeping tablets.
I am a bit worried now for people who do seriously have depression, if that is what they are going to give you without even suggesting counselling first !!!
That appears very very dangerous to me !!
Everyone keep getting better, and love to you all 😀
AnonymousJune 3, 2007 at 11:22 pm
Yes, I had much the same experience. particularly with the doctors.
My GBS developed much faster though and I am now close to two years
in. It started with Epstein Barr and in case you didn’t know that’s also
very rare except in teenagers. The rates of occurrence I’ve found say
that the most likely age group is from 15 to 19 and that the rate for
the entire population over 35 is 2 per 100,000 per year. In other words,
they have no statistics as 2 is the lowest number they can put there
without asserting that it is impossible. I suggest that some of the
symptoms you describe could be from the EB.
AnonymousJune 5, 2007 at 3:55 pm
Actually I don’t think EB is that rare. My 2 sister-in-laws have it and an Aunt also has it. Its just not reported much since it is an autoimmune disease. It knows no age limits, genders or anything else. Many cases do start off with mono though, but not all. Take care of yourself and don’t share food, drinking cups or utensils with anyone.
AnonymousJune 7, 2007 at 4:09 pm
[B]The Sedimentation Rate[/B] measures the speed at which [B]Red Blood cells[/B] settle to the bottom of a test tube. The presence of certain abnormal proteins in the blood can cause red blood cells to stick together and sink to the bottm more quickly.
It is an indicator that some sort of inflammation is going on, but does not indicate which illness.That all has to be ruled out with other testing.
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