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Living with Polyneuropathy CIDP, GBS, & CMT

Diagnosed Set 2015, out of hospital & physically growing stronger, but emotional wreck, anyone had the same & how did you resolve it? Also had 3x IVIG, how will I know if I need more?


#1

Last August I could barely speak, walk, or stand, with chronic headaches, now stronger physically but still have headaches most days, plus emotionally I'm a wreck. I cry at anything that goes wrong, whether it's my internet, home phone, or mobile down. Finances, operation cancelled, refused benefits, refuse Patient Transport & so on. Has anyone else suffered in this way? I have been approved for intense CBT.

I have had 3 lots of IVI(G and they are hoping my own immune system will now kick in, but couldn't tell me how I'd know if I needed more. Anyone?

I am waiting on 2 toe operations, plus back injections & am wondering if anyone else recovered enough to resume their full time job? I work in a school so it's physically draining wandering around the classroom, plus mentally draining having to be on the ball constantly. I get tired in the afternoons now. Wondering if they could let me come back on a gradual basis, but frightened they will put pressure on me to go back too soon. I am not entitled to any more sick pay.

I would appreciate finding out if anyone else has had any similar experiences.

All the best,

Karen Harding- London, UK


#2

Hello Karen.

I've had CIDP for close to two years now. Bascially I had a real hard time with my legs and my right arm/hand. I had to drag myself up the stairs and I have fallen multiple times. Once I got IVIG (after a 5 week leave from work and 4 of those weeks were waiting on approval for the treatment) I felt a lot better. I still do the infusion every six weeks and it usually takes at least 3 days before I see results.

As far as I know I'll be on IVIG forever or until they find a cure. Everybody is different so I guess you'll have to see how your body reacts after treatment. There is no set in stone answer I'm afraid.

I am able to work full time now although I do get tired faster. My doctor told me at first to go back to work on a limited basis, but I felt fine and went back full time. You'll have to talk to your company to see what you can work out. Hopefully they will be understanding.

I wish you all the luck in the world.

Roland


#3

Hi Karen:

I was diagnosed in February of last year and was just getting to where I relied on a walker. After the loading dosed of IVIG, I saw a change in day 3 and a significant change the week after where I didn't need the walker. Slowly, my ability to do stairs, buttons (dexterity), brush my hair came back. I've been on monthly IVIG treatments (50mg) 1x a month, and it took about 3-4 months before some of my strange automatic issues went away (sensitivity to water, swelling in hands, cold sensations). Every one is different and it takes some time to get to know your situation and limitations. That part is very frustrating for someone, like me, who likes to set expectations and be reliable. My company was very accommodating in that the first few months while I was seeking diagnosis and during treatment, they allowed me to work from home PT. I was able to start driving in to work (1 1/2 each way) on gradual basis by the third month of treatment. I did 2 days a week and then 3, 4. I work from home a day a week. I really turned around with the IVIG in that my reflexes came back. My responsibilities started to ramp back up to the regular level. I traveled for business a few times this last year.

The one thing I have learned is that physical stress (I just had surgery) or even emotional / mental stress can be taxing with CIDP. I seem to be given so much energy and in my case, where I am healing from an internal surgery, that is pulling from my supply. I have to manage that energy very carefully.

Going through the process of getting diagnosed and understanding the disease can be very emotional. It is understandable, but a lot of people have had good success with treatments. I had to take this past year 1 day at a time and I am a planner and I worry. I found that the IVIG really helped.

Best to you!


#4

Four years of IvIG (240 grams/month). Saw INCREDIBLE improvement after first infusion, and it came on 48 hours after first IvIG. From what I know IvIG works or is doesn't. In your case, unless you go to high dose, I'd say it isn't working. The cost my insurance company pays is,$35K/mo or more.

CIDP is purely a motor neuron defect (okay, yes, with some sensory defects) and once you understand what that means in total, the mental stress caused by it can be better understood. Try swimming as exercise and a sauna, or anything where you are in water for an hour or more. If you buoy up your muscles in water you remove some of the gravity, thus allowing muscles more freedom to grow stronger.