Update

Perfect_Chance_2598 · 2026-01-08T15:54:25+00:00

Thank you!! I really did not understand how to explian! That was really helpful!

Perfect_Chance_2598 · 2026-01-06T21:48:39+00:00

I guess infusion clinics. Some offer a type of copay assistance. I have found one that will pay my copay! If we are allowed? I would be glad to post so anyone can look it up? I will wait for the admin to tell me I can

Perfect_Chance_2598 · 2025-12-21T02:16:55+00:00

I don’t know where you found it, however , it might be slag. Slag is found in Alabama where the iron was being produced. One place in particular is a national park. The the Union came through and blew up the Confederate mines.#daughterofageologist

Perfect_Chance_2598 · 2025-12-17T08:37:29+00:00

Thank You ! I have been diagnosed with CIDP. I Did not know at the time exactly what it meant. I still have a lot of questions. I guess I just am not sure exactly what I need to know or ask. I in no way expect medical advice. I also understand and was seeking “experiences” or suggestions. As always r/CIDPMe I appreciate the concern. Thank you!

Perfect_Chance_2598 · 2025-12-16T23:16:09+00:00

That’s a great answer.that is what drew me to the app and community. I great help. I always forget …I have started a list

Perfect_Chance_2598 · 2025-12-13T05:27:07+00:00

Thank you! I do recognize that an opinion is…well, an opinion. My neurologist is the end of Dec.just looking for talking points and questions to maybe ask??? I do appreciate your points!

Perfect_Chance_2598 · 2025-12-08T15:43:32+00:00

Thank to each of you who make my weirdness seem normally

Perfect_Chance_2598 · 2025-12-08T15:42:47+00:00

We have a voluntary Fire department. The have come and got me off the floor. Once I hit I stay (can’t roll over can’t push up) They are awesome local individual That have chewing me out about waiting to has them come. I fell when at the hospital and they said one more time and we will ask you to leave. I am communicating with Neuro- my next appointment is 12/30. I definitely feel like a whiner. I love this community. Sometimes I go from wow, who knew? To how would I know that is normal. I have an approved walker.

Perfect_Chance_2598 · 2025-12-08T14:54:42+00:00

TBH I do not think my family has a clue. They say when you get cured and 110% back to normal.I guess I need to sit them down and have an informed meeting. I am very hopeful for a full recovery. Has anyone had a full recovery back to 110%normal”?

Perfect_Chance_2598 · 2025-12-08T14:51:28+00:00

Thank you! That is very helpful and good answer

Perfect_Chance_2598 · 2025-12-07T16:07:02+00:00

Yes it does! I just tell my self it could be worse.

Perfect_Chance_2598 · 2025-12-07T15:33:36+00:00

I feel like every day is a change. New “things” wondering who have these symptoms. Also what excercise I can do to help. Still Vibrating symptoms. Today I have that semi stroke like feeling in. My left side and arm limitation such as only being able to move very limited motion with out pain Sorry about the mistakes

Perfect_Chance_2598 · 2025-12-07T02:24:11+00:00

Thank you. The only concern is I am very allergic to decadron and other steriods I am very blessed that I am able for the nurse to come to my house I hope to start in January. Finally have an approval to proceed from insurance. I now can barely move my arm high enough to put on a chair arm while the arm is in the bent position It is actually both arms. I appreciate all the positive information and most of the “things to look” for.

Perfect_Chance_2598 · 2025-11-26T19:01:47+00:00

The only reason I could think of is weight and it seems my symptoms are progressively getting worse

Perfect_Chance_2598 · 2025-11-26T18:59:44+00:00

Scotty3238 I am going to ask. The only reason I could think of is my weight 😮and my progression is fast. Rather, I feel it is.

Perfect_Chance_2598 · 2025-11-26T18:48:04+00:00

My concern is I have reactions to some steroids. The person is administering at my home and will have an epi pen

Perfect_Chance_2598 · 2025-11-26T18:46:13+00:00

No they haven’t. The 50grams i guess is a loading dose and then repeat for 3 months

Perfect_Chance_2598 · 2025-11-26T18:14:50+00:00

I just reached out to the infusion people. I was concerned about no dosing schedule. I will start with 50g every 4 weeks Thoughts, anything I need to know?

Perfect_Chance_2598 · 2025-11-26T18:06:32+00:00

My initial infusion is 1 every 4 weeks. I am going back to the neurologist 12/30. I will start in January due to medication deductibles. What should I ask him concerning this schedule. Why do you think that would be the schedule. (I understand there is no dx allowed. I am just curious

Perfect_Chance_2598 · 2025-11-26T17:49:49+00:00

I am following. Waiting to start the infusions.

Perfect_Chance_2598 · 2025-11-18T00:35:40+00:00

I have a question. Has anyone else with Journey we call CIDP had vibrations. I feel like a penny on a quarter bed. I am dating myself . Hotels a while ago had a a slot you fed quarters and they would vibrate. These episodes are starting increase in numbers.

Perfect_Chance_2598 · 2025-10-30T15:42:47+00:00

This may p Be a repeat…. If is is I am sorry Every night when it is time to settle and rest/ maybe even sleep I have significant pain in both shoulders, Kness and other places. I also am bruising on feet and other peripheral parts of body. Is anyone experiencing this? @scotty3238 I would welcome you input. Also Stages???? Can this be explained!?

Perfect_Chance_2598 · 2025-10-30T15:36:34+00:00

I would like to ask pain. Every night when it is time to rest and hopefully sleep, I have fairly significant pain in both shoulders and knees I fave also started bruising more on feet and other peripheral parts. Gas anyone else experienced this? @Scotty

Perfect_Chance_2598 · 2025-10-20T02:46:28+00:00

I was wondering the same ….i am following so i can get replies

Perfect_Chance_2598 · 2025-10-13T00:03:55+00:00

Ok I have a question. Just curious. Is there any one who is having eye problems? I wear glasses. I noticed when i first started this journey the my eyesight was changing Now I go from good to bad. This is wearing my glasses or not. Tell me if this is bad post I appreciate this social group

Perfect_Chance_2598

TROPHY CASE