Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (13)

Wed, Jan 15 11:17am · IVIG Infusions in Neuropathy

I’m being treated for same as you.
I’m hoping IVIG will help in stopping it from getting worse, that’s what my neurologist is saying also.
It’s been 7 years for me getting a diagnosis of CIDP, I’ve seen 5 neurologists and had many tests over this period.
I finally had a nerve and muscle biopsy in August, from which I’m not completely healed.
It showed demyelination, and I was given this diagnosis of CIDP, which IVIG was recommended.
Can’t do steeroids because of my bone issue, having broken 3 times in a year.
They think it’s due to the neuropathy,that it’s broken so much.
My wounds take forever to heal, and they think it’s the neuropathy causing it to take forever.
I’m trying to hang in, as I’m sure you are, but it’s difficult at times.

Wed, Jan 15 11:05am · IVIG Infusions in Neuropathy

I started having some symptoms 7 yrs ago, starting in my toes and now it seems to have travelled thru most of my body.
Besides my feet and legs, it’s in my pelvic area, my hand, and my lips are numb.
I hope that IVIG will help me, but my neurologist is hoping to stop it from progressing.
Not much hope for curing it,unfortunately.

Wed, Jan 15 11:00am · IVIG Infusions in Neuropathy

I had my first round of IVIG infusions Oct, Nov and Dec, over aa period of 4 days in Oct, then 3 days each session in Nov and Dec.
I honestly felt no differently after the third month.
I was glad to read that it takes awhile to see if it’s helping my CIDP or not.
I’m heading for another 3 month session starting next week.
In March my neurologist will reassess me. I hope I start to see positive results.
This has been very trying for me the past 7 yrs,since my symptoms started.
I know what you’re going through as I have lost my balance and my feet are so numb at times,it’s horrible.
My numbness has gone up to my lips, my right hand, and my pelvic area is numb also.
I broke my right foot 3 times since March 2018, and have had 7 surgeries.
Due to my neuropathy I don’t feel pain from the breaks or the surgeries, although I do get that shooting,burning pain,in both of my feet often.
I never know when it’s going to hit me, so I take Ibuprofen round the clock.
I’m on gabapentin 1500 mg daily, but I really don’t think it’s working.
My quality of life stinks, can’t do much of anything.
I’m wearing a clumsy black special made boot so I can walk, boot may come off in March, but I’ll have to wear something else to keep my ankle from breaking again.
Take care hope you feel better!

Nov 22, 2019 · CIDP (chronic inflammatory demylinating polyneuropathy) in Neuropathy

It’s demyelinating not demyelination, spell check put it in wrong.

Nov 22, 2019 · CIDP (chronic inflammatory demylinating polyneuropathy) in Neuropathy

It’s chronic,inflammatory, demyelination, polyneuropathy.

Nov 22, 2019 · CIDP (chronic inflammatory demylinating polyneuropathy) in Neuropathy

I have just finished my second round of IVIG infusions, and I don’t feel any relief in my neuropathy symptoms.
I will be having my third round ,middle of December, then I’ll get reassessed by my neurologist.
Has anyone felt any improvement, after their treatments?
I’m getting IVIG for CIDP.

Oct 26, 2019 · Ideas for pain relief from Small Fiber Neuropathy (SFN) in Neuropathy

Thanks for your input.
I also take Gabapentin, 1500 mg daily, and don’t really know I’d it’s working that well for me.
Past few days nerve pain unbearable in my feet and ankles.
Just seems to come on suddenly, mostly in evening.
I take Ibuprofen round the clock, but I’m thinking of starting Evening Primrose Oil after reading your post.
I’ll try anything at this point.
Marilyn M

Oct 24, 2019 · Controlling the Anger and Sadness: My Neuropathy is Overtaking Me in Neuropathy

Hi Jim,
I also have similar symptoms as you, even though I’ve been diagnosed with CIDP.
I’m with you, we need to be able to connect with others who are going thru similar issues, and it certainly helps to be able to vent, as they say,without seeming like a whiner!
God Bless, Marilyn M