My partner is in hospital - they pretty much have a diagnosis now of CIDP. I have joined as a member as he is unable to even use his arms/hand/fingers, same with legs.
His symptoms started in July this year. He noticed when crossing a road that he couldn't break into a run. His legs just wouldn't. Also noticed when playing guitar (his passion) that he had trouble changing cords. He also started having problems climbing stairs. He went to his GP and got a referral to a neurologist - his appointment was in October. He stopped work for a a few weeks just because commuting became a problem (using stairs at train stations), but he then improved and started working as normal again. When the neurologist saw him his reflexes were normal and only slight weakness in some muscle (arms and legs) and he was booked for EMG/NCS - another 5 weeks wait.
3 weeks ago his legs collapsed under him while he was leaving work going down stairs. I took him to ER the following day and they send him home again and just said to wait for the nerve tests ( still a week away by then). In the following few days he had 4 more falls with his legs just folding in under him. He went from walking with a stick to a frame to me having to call ambulance because he couldn't get up - admitted to hospital 2 weeks ago. Originally thought GBS but because of the episode in July now thinking CIDP, and lumbar puncture + EMG/NCS supports this. Blood tests, MRI and xrays head and spine fine. He now also lost most movement in arms, hand and fingers over last few days. He had a course of 4 days IVIG started last week Friday finishing Monday, but they then queried diagnosis and stopped treatment, referred him to a tertiary hospital (St George's in London - they are brilliant) he was transferred Wednesday and they decided to give a 5th dose IVIG last night to finish the course. His lung capacity tests are still fine (3.4 was the last one), they are doing this every 4 hours with his other vitals. He has today a lot of phlegm and constantly trying to cough and has been given nebulising and using a cough assisted machine. He was a smoker and obviously forced to quit 2 weeks ago so this might explain the phlegm, also having to lie back and not able to move himself.
He is still swallowing fine, but needs assisted feeding as he can't move arms.
I am scared, he was still working 3 weeks ago and now basically a paraplegic. A big shock to all of us. Just not sure what to expect, no response to the treatment so far. Anyone with similar experience?
And a Merry Xmas to everyone!
So he was transferred to Neuro ICU beginning this week and 2 days ago was put onto a ventilator. They are having to keep him heavily sedated as he is really fighting the tubes (shaking his head badly and getting really agitated) whenever they try and wake him up. They have started him on plasma exchange now and he had the 3rd treatment out of a 5 day course today. So far no improvement but they are all positive that they have the right diagnosis and that it is just a matter of time before he responds.
so sorry to hear about this. Very sad and scary indeed. I totally understand how scary it is given the fact that I am myself in a very scary position. I was a healthy woman until about 8 months ago, when I started to get weaker and weaker until now I can barely walk. I am only 49. I have no diagnosis and I am getting worse and reading all these stories is very scary because I don't know what to expect. The neurologists I saw--admittedly, when I was feeling better--dismissed me and my symptoms.
Q: why was your partner put on a ventilator?
Why did they query the initial diagnosis?
How is he feeling now after all the IV treatment?
Was he totally fine before this crisis in July or did he have some symptoms?
Thank you for your reply. I am so sorry to hear that you too are fighting this battle, even though you do not have a definite diagnosis yet.
He was put on a ventilator because his cough reflex got so weak and he had a lot of mucus that he could not get out. Even with nebulising and physio/cough assistance they could not help him to get rid of the mucus so he got into so much distress he actually asked to be intubated. He now had a tracheostomy yesterday and he is tolerating this much better. His lungs are "terrible" according to the ICU doctor, he is now being treated for infection and he still has a lot of fluid in the lungs.
The query with diagnosis is really just the timescale. He seemed to have a more chronic presentation initially but in the last 3 - 4 weeks have crashed into a more typical GBS presentation. It sounds like there are so many variations of the syndrome, each case is different.
He continued to get worse whilst having a 5 day IVIG course, this finished 2 - 3 weeks ago, Because of the deterioration they decided to do a plasma exchange last week, 5 days, he finished that 3 days ago.
His health was fine before that, apart from some lifestyle issues - being a little overweight and a smoker. He has always periodically had lower back pain but likely again weight/lifestyle related.
They think maybe yesterday there was a little more movement in his arm/legs in that he could wiggle from the shoulders and hips, but I'm sure he could do that before he had to have the sedation so not sure if this is true improvement or just the fact that he was awake more yesterday than he has been in a few days.
Thank you very much for the support. It really helps to hear other people's stories and know that you are not alone.