Could this be GBS

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)

Next week

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

Week 4

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 🙂 🙂 🙂 😉