Tagged: Started by RB
November 30, 2019 at 11:04 pm #117301Ronald BahnParticipant
I was diagnosed with CIDP about 4 months ago and just completed my 3rd “round” of IVIG treatments. It seems that the symptoms can be all over the board that others have. Mine seem minor compared to most. However, I am curious if anyone has any at all similar to mine. They are paralysis of all the fingers on my right hand (including thumb) with constant numbness and tingling in my right arm starting at the elbow and running out through the fingers. Right hand becomes cold very fast with any cool weather. Just curious if anyone has similar symptoms.
December 1, 2019 at 1:14 am #117302
I was diagnosed in 2017 with CIDP, yes I also have numbness in my right hand, more so in the pinky and ring finger, with severe weakness, partial paralysis & tremors. Left hand not as bad, a little more functional. Arms not as much. Foot & leg weakness with drop foot, more severe on the left but the right isn’t much better. Circulation in my feet & lower legs have bad circulation and are cold to the touch.
December 1, 2019 at 9:58 pm #117305
Mine is mostly in my feet and legs, mostly numbness but sometimess I get these random sensations that feel a lot like being zapped with a stun gun. I do have tremors in my hands though so my dexterity has suffered. My case seems minor too compared with others I’ve been reading about but I suspect it’s only because I was diagnosed before it could progress any more. So far I have yet to get IVIG because of the shortages (hopefully coming this week…) . My Prednisone has been cut to 30mg/day and it seems now that it’s only holding it off from getting worse.
I’ve also noticed sensitivities to temperature. Everything from taking a shower to drinking cold drinks. I’m wondering if others have this as well.
December 2, 2019 at 11:01 am #117310
It sounds like your condition is where I was a couple years ago.
Originally my symptoms started with numbness in my toes, that’s all. The numbness slowly crept up to my legs. My fingers followed suit, hand then arms. The last year or so I’ve progressively gotten weaker & weaker in my legs, and in the last 6-8 months my hands & arms have lost their strength.
Those zaps by a stun-gun I had earlier on, not recently. It’s not so much a painful sensation, but very unpleasant, I described it as torture, and would happen always at night.
I am on my second script of Prednisone. At first they helped but I stopped talking them, don’t seem to work anymore.
I started IVIG in 2017, but my symptoms have progressively gotten worse over time. I’ve talked to my neurologist about other options, he’s not keen on stem cell therapy or plasma exchange. Maybe I’m impatient and just want to feel right again, I cannot stand being home idle. My mental health is suffering.🤪
I guess I have no other choice but to hang in there and fight the fight. 👍🤞
You hang in there, don’t waist time if your therapy isn’t producing positive results, be proactive. The further the CIDP progresses, the more damage you have to reverse or repair.
December 6, 2019 at 8:48 am #117319
I haven’t lost any strength, just loss of sensations and dexterity.
When I started Prednisone, it was only a couple days before I noticed a huge difference and was finally able to sleep at night. Before I had a burning sensation that was so bad I could hardly come in contact with anything and not feel pain. Gabapentin helped some, but it made me feel awful so I quit it after going on the steroids. So far the twitches and tremors have been getting better until recently. I don’t seem to be getting any worse, just no longer getting better.
I too have mentioned things to my neurologist. She seems to be a huge fan of IVIG, and shoots down the other options I’ve been reading about likes stem cell or Cellcept.
You are right to be impatient. This is something that needs to be addressed quickly before it causes more damage.
This has destroyed me. I lost my job/income. Most of the things I once enjoyed, I can no longer do. About the only thing I have left is shooting pool which I do not so much because I want to, but to get out of the house but it’s turned out to be some of the best therapy for me too. Being on my feet for a few hours helps the condition, and helps keep my glucose down. Even so it’s something I can only really do maybe once a week.
December 6, 2019 at 11:29 am #117320
Yeah Dana, I’m right there with you.
I’ve been out on disability for 5 months, and will be out for at least a couple more. Not being able to do the things you normally wouldn’t give a second thought to is difficult. Can’t ride my Harley, can’t play my guitar, spit wood…
Talk about feeling useless.
I try to do small chores around the house, but that takes all my efforts.
My neurologist recently doubled my Gamunex infusion and that seems to help. Im a little steadier on my feet. I hope my progress is not short lived.
December 6, 2019 at 12:51 pm #117322
Don’t get me started on the guitar thing. I finally figured I’d have the change to pick mine up and learn to play. My fingers couldn’t even hit the frets! It’s very frustrating.
I haven’t worked in about 7 months now (was only just diagnosed as CIDP in July, right as my FMLA ran out). I’ve been waiting to see how the IVIG goes before I give up completely and go on disability but I think it’s inevitable given that constant infusions required. My old boss did call about a month ago to see if I wanted my job back after the new guy didn’t work out but I just can’t do it in this condition.
I did a *lot* of work around the house when I started the Prednisone. It made me so restless I just couldn’t sit still. As the dosage was reduced, so went my energy. Now I find myself napping during the day.
December 6, 2019 at 3:33 pm #117323Janet AubryParticipant
I posted on another CIDP section the other day in this forum questioning if taking IVIg without prednisone is as effective. I care-give for my friend Jeff who was diagnosed almost a year ago. He went from a viable, strong, general contractor, biker, athlete to a quadriplegic in 3 months time. He got a quick diagnosis and started IVIg very early onset but it took 3 months of IVIG infusions 4x month most of the time spent getting worse. When I noticed one tiny sign things might be different I told the doctor. He added about 65 mg of prednisone. Within a couple of weeks Jeff finally started to see very small improvements. Almost one year later he has climbed his way back very far. Read what I wrote in detail because his story is similar to yours. I think you will be encouraged and want to ask your doctor to figure out what can be done to mix up be kick start the meds and try to shorten recovery time. It looks like early diagnosis and aggressive multiple treatments ASAP might be effective. I see it working for Jeff as he continues to improve and get some of his life back. I wish you the best – stay in theses forums and search for answers. Be your own advocate. It is what got my friend the information, fortitude and courage to fight.
December 8, 2019 at 2:11 pm #117326
Dana, Where I work, MTA railroad, by state law your/my employer has to accommodate you by providing a job you’re able to do.
I’m not sure of your circumstances, but you might be eligible for some assistance, look into the matter.
They can’t get rid of you for being disabled.
If I can’t go back to ironwork, they will place me in a job I’m able to do at my present pay rate. You & I both know we need that insurance. My insurance runs out after a year of being out. One way or another I’ll be going back to work.
December 8, 2019 at 7:11 pm #117327Janet AubryParticipant
Somebody in these forums told me a few days ago the Cellcept is working for them now post IVIg w/ Prednisone. I would want a proactive doctor that is willing to try different combos if what you are doing isn’t working. Our doctor is the boss and has a track record with CIDP but he is still very open to suggestions or willing to look at the successes of others in here have had. The hand weakness came third to my friend Jeff – first he lost his legs and then feet then his hands and finally arms. He said his hands and feet felt numb and big hugely swollen but they were not swollen or big. He ultimately lost the strength and dexterity in his hands before finally losing the arms. It allfinally started to get a bit better after several months of IVIg. First it was 3 months of continued decline on IVIg and in the fourth month came the introduction of 65 mg Prednisone. That really turned the tide but not fast. A slow progression. His hands and arms were last to go and first to come back. His legs and feet have been slow coming but he can walk fairly ok without chair, walker or cane but it’s hard. His feet remain messed up and painful. He is down to 2 days of infusions per month and about 20g of prednisone. It’s like walking a tightrope of fear that it will go south again drastically. It’s what his doctor calls the art of it. They are getting him back to as normal as you can get and off the meds without losing the remission and having a setback. He has never given up for even a minute and works out everyday. He was extremely irritable and difficult for quite some time. Understandable. His mental acuity was there but kind of sluggish like his hands were. It has come back pretty much. Do not give up until you try everything you can!! Everyone is different and there is no way to know what will work in what combination or when. There are some statistics for CIDP but in reality you guys who have it now are making the statistics because the previous stats are based on very few people. My theory is – if you’re going to be Guinea pig or lab rat anyway you might as well go for whatever treatment you can talk them into giving you. It’s your shot to call. This forum is the best place you can hang out for knowledge and caring support. The people in here are the only ones who know exactly what you are feeling. Sharing and helping the other patients here helps them and will help you to. Everyone needs to help somebody else to feel needed – and you are a valuable resource in here. May the force be with you.
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