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Living with Polyneuropathy CIDP, GBS, & CMT

Contortions


#1

Well! Well! Do you agree that one if the most difficult things re: CIDP is the every single day ‘surprises’? (And NONE come with bows and gift wrap?)
My worst 2 surprises this week are (not in any special order)

  1. The facial contortions are B A C K! These began very shortly after I fell ill. To me, having my face twitch and contort into a painful and UGLY, SCARY ‘vampire woman’ is the worst! (I also have contortions of hands/wrists that are painful but don’t scare small children if you know what I mean.
    Neuro gave me Gabantin 2x day and it got it under control for last 4 months but now it’s B A A C K K!

  2. Having your Neuro call you with this msg of JOY: 'I am referring you to a Neuro at Shand’s (HUGE MEDICAL CTR affiliated w/ U of FL) ‘Why??’, I ask. BECAUSE YOU ARE NOT GETTING BETTER!

PROBLEM: I don’t want to go start all over again in a strange/new environment w// a new Neuro in a huge facility! I like my nice quiet home, my perfect bed, the quiet of living in a forest! What do I say/do to make this so my Neuro doesn’t get upset and frustrated, and I get to stay home?
I HATE SURPRISES!


#2

My husband was diagnosed with CIDP in January of 2016. His condition can change from day to day, hour to hour. There is no rhyme or reason to this disease. He is unable to move his legs or body. Fortunately he can use his fingers and hands somewhat but can not fully extend fingers. This condition came on so suddenly, within two months. The pains throughout his body were excruciating especially his feet. The slightest touch can set off pains. He is under pain care management and takes gabapentin ( genetic for neurontin) 600 mg three times a day. He also has a fentanyl patch of 175mcg which is left on for 72 hours at a time. He also takes a 5mg hydromorphone pill as needed. This combination has truly helped the excruciating pains he had. He still has pain, some days are better than others, but this concoction of drugs has helped. He is not in a stupor and is mentally sharp. Perhaps you can ask your doctor about these other medications. Hopefully it will help you.


#3

I want to add that he also has IVIG infusions every two weeks


#4

Stella,

WOW! OK! I’m never gonna whine again after reading what your husband and
you are going through!

Reading your post changed my entire understanding of how very very BAD this
awful disease can become.

This has to be as hard on you as it is on your hubby!

I’m adding you both to my prayer list, asking God for strength for you and
pain relief for your husband.

In His Amazing Grace,
Mary Ann


#5

Just came home from church where I too am praying for all of you. God bless you!


#6

Stella,

Have been praying daily that our merciful Father lessens your husband’s
pain and that He strengthens you … your heart, soul and Spirit.

Joshua 23:14 “… You know with all your heart and soul that not one of all
the good promises the Lord your God gave you has failed. Every promise has
been fulfilled; not one has failed.”

In His Amazing Grace,
Mary Ann


#7

Thank you Mary Ann. While dealing with my husband’s illness, the Lord has sent me an army of angels through my friends and strangers. He is sending you a message. If you are able to go to Florida, do so. My husband’s neuro, who is a specialist in CIDP in NYC, advised that we go to the Mayo Clinic. Unfortunately travel for my husband is impossible. Take the chance, trust in our Lord, and go. If you’re not happy you can leave. At least you can say you tried.
Take care and God bless you,
Stella


#8

While I can certainly understand why you may not want to see yet another Neuro and I’ve no idea how far you may have to travel to get to Shands, there IS MOST DEFINITELY something to be said for seeing a Neuro specialist at what sounds like a Tertiary center in FLA which is what Shands appears to be.
Your message didn’t say you were physically totally unable to get to Shands, just that you weren’t keen on going.
I don’t live in FLA so I can’t speak to the rep Shands may have.

I’ve no idea what your CIDP history involves nor how many Neuro’s you have seen re: your CIDP but I strongly encourage you to reconsider.
I also commend your current Neuro for recognizing his or her limits re: treatment plan options/responses along with a corresponding decision to re-direct you to perhaps someone with more experience/expertise in addressing/treating patients with CIDP and the sequela caused by/from CIDP.

Sadly, the sequelae from CIDP varies greatly. So does the degree of damage to the body it can cause.
Don’t forget other factors like Age, other conditions you also may have that may also be creating adverse impact as well.

CIDP effects can indeed be long term but that isn’t to say absolutely nothing can be done to help alleviate what you must deal with esp if there’s a chance to help you make your life more bearable/comfortable/enjoyable no matter the limitations you may have. This is esp true re: any negative sequelae you may already have.

Involvement at a Tertiary Center like Shands could well be a good thing to obtain a qualified Expert opinion. Your comment doesn’t ID how many “experts” you have already seen nor what they have suggested/recommended to you not to mention whatever response to same you have had.

Look up the name of the Shands Neuro your own MD suggests you go to see.
Call his/her office to find out how many CIDP patients he/she currently has and see if there’s any way to poss be allowed to speak to one of his other patients with CIDP.
Offer to be willing to have some of your key records sent to the specialist’s office for said MD to review.
Sadly, while there is No Magic Cure that can fix or reverse whatever damage you may already have, that isn’t to say there’s nothing at all that can be done or tried to try to improve upon the sequelae you personally have from your CIDP…

Should you choose to, ask the rec’d Neuro specialis/office t if he/she can take a look at your current Neuro’s records, tests included, that you or your current Neuro’s office can provide.
Ask if you can provide a synopsis of your own CIDP history and what your current issues are then ask if that is something this Neuro specialist thinks he/she can help you better address.

How far out are you (months vs years) from the CIDP onset?
How physically and emotionally impacted are you with Activities of Daily life in your home environment?
Provide a List of the specialists you have already seen + the PT/Rehab services you have had with dates (approx is OK).
Request the Specialist to review and then discuss with your current Neuro BEFORE you make any arrangements to get yourself to Shands so that you can make a more informed decision as to whether or not the trip to Shands is warranted.
In the end, the decision is YOURS to make.
Thinking of you with understanding from California…


#9

A very belated but heartfelt ‘Thank you’ for your time and insight re: referral to Shands. Almost all of your recommendations were accomplished. We did go and it was an excellent experience.

I was hospitalized the day after my birthday , 2/18/:17 ., for the first time. Ended up having 3 hospitalizations, 3 surgeries (nerve biopsy, muscle biopsy and port placement) during that time. Also had IV corticosteroids. Diagnosed early April. Put on high dose (60mg) Prednisone. Continue worsening. 6/17 began IViG in 4 wk cycles. All failed (continued Prednisone-titrated to lower dose) . Moved 2 3 wk cycle. Critical failure. Just had second 3 wk IVIG 2 days ago ., and went from walker yesterday to not being able to walk today!
Going to Neuro PT wkly.
MD at Shands is head of Neurology Dept and head professor at U of FL. His nurse said he rarely sees patients anymore b/c of work load.
His comments at end of 3 hr appt were;
Confirming CIPD
Move to 3 wk cycle
Increase dose of IViG
If no improvement then
Move to 3 wk cycle if no improvement move to 2 wk then one wk
If no improvement there Plasma Exchange

Again, thank you for your kindness, insight and encouragement!
In zoisite Amazing Grace
Mary Ann Wright


#11

FINALLY, this very second, I found you again!

Stella, I am praying w/o ceasing for both you and your husband.

Have done everything possible to be able to chat w/ you in a Private Chat so we can talk about and encourage one another on the Lord. BUT, I still don’t know how to do private chats!

YIKES!

If you receive this, please write back. I care about you and your husband and love you with the love of the Lord!

My nick name here is thankfl.

In His Amazing Grace,
Mary Ann


#12

I took your recommendation and did keep the appt w/ the Director, Dept of Neurology @ Shands JAX (He is also Head Professor, Neuology U of FL.

The assessment was in 4 parts:

  1. Interrogation

I do not use that word lightly. (Married to Law Enforcement man for many hrs). Rapid fire questions re onset, immediate treatment, hospitaliztions, on going treatment, other concurrent issues etc etc.etc.

  1. Nerve conduction study (current for comparable)

  2. Review and recommendations

Here, he confirmed CIPD, recommended increase in dosing of IViG and Prednisone.
Most importantly, he put forth a very detailed ‘If this, then that’ prospectus explaining his recommendations re: if option A doesn’t work, then option B is ______ . And on and on.

I very much appreciated this information so I could finally have a clue as to a possible “Game Plan”going forward!

  1. He answered any/all questions from both me and my husband.

I HIGHLY RECOMMEND Dr. BERGER however I was told he rarely sees patients b/c of his other responsibilities.

Thank you for your wise encouragement. Without a doubt it was the best and most 8 months ago.

With appreciation,
Mary Ann Wright
(thankfl)


#13

I am so pleased you chose to go to see a qualified Neuro expert for your CIDP. Thank you for letting me know how the visit went and providing feedback as to what this expert recommended.

Kudos to your local Neuro for recognizing his/her limitations in treatment approaches to use/try.

For anyone else out there with a similar history, no matter where you may live, I would encourage you to see an “expert” that typically can be found associated with Tertiary centers (think University level teaching institutions with easy access to well regarded facilities (hospitals incl) no matter how far away from your home that may be.

Do realize I am NOT criticizing any Neuro specialists in your local communities. When CIDP worsens to the point your current local Neuro may not have a whole lot of further options or treatment recommendations for you, there is nothing wrong with going for an "expert opinion even if same isn’t available in your local community. By seeing someone with connections to a well known and respected teaching hospital or clinic it can’t hurt. Esp as it is likely going to be a hospital teaching facility that will have the necessary equipment on hand to facilitate any further testing recommendations that may be made if same can’t be done where you live locally.

I truly commend your local Neuro willing to work with you in this situation and for not becoming offended at your request for your medical records to go to see another specialist with expertise involving the care of people who have to live with CIDP.

My Best wishes to you as I well know it isn’t easy living with CIDP 24/7,
L in So California


#14

Great advice and reassurance


#15

Stella, in reading about your husband’s condition, which I share too, I wanted to offer my most sincere condolences on what CIDP has done to your family. I’ve dealt for 10 years now with CIDP. I’m mobile and have the ability to walk. But I have chronic pain in my lower legs and feet.
Did your husband have cidp for a while before it plunged him down into the inability to walk? Was his loss of mobility a delayed onset of the initial disease? Or was it all part of the same initial onset of the disease?


#16

Stella!

Am so very thankful thankful a mutual friend William Scott) forwarded me
his response to you making it possible for me to ‘find’ you again!
Stella I have been praying for you and your hubby, especially about the
pain.
Has your Dr referred you to a pain mgmt clinic? I was advised by William
to get to pain mgmt ASAP. Very good advise!
I, too, am already on the 2 wk IViG infusion cycle … THAT WAS FAST!
Nothing has seemed to slow this ‘train wreck’ of a disease. Have been told
next step is Plasma Exchange.
Please feel free to write me a private correspondence with specific prayer
requests for both you and your husband. I am here for you.


#17

Thank you for your prayers. Our lives are filled with many challenges and prayer is what gets me through the day. I’m sorry if I don’t respond to posts. My mother, who is 88 and lives alone broke her femur. Between running to her home and my husband’s situation, and in addition to working full time I don’t have time to even read my posts. I take care of financial matters and their needs. I have help for my husband but now am arranging help for Mom. Tons of paperwork for each and financial responsibilities which I manage with the grace of God. God did bless me with two grandchildren since my husband’s illness which has brought us so much joy.
My husband has been under pain management which has helped alleviate his pain a great deal. However he still can not walk because the most sensitive part of his body are his feet. He still feels pain to the touch there. He still can not sit up on his own. Quite honestly I feel frustrated because he is afraid to push himself in anticipation of pain. He also dislikes when we use the hoyer lift to get him out of bed again due to anticipation of pain.
Please continue to pray for us as I will for you. I hope you find some peace and comfort. You are one of our angels!


#18

William,
It saddens me to hear how long you’ve dealt with CIDP. The onset on my husband’s illness was fast and furious. In August of 2015, he felt tingling in his legs. Vascular doctor could find nothing wrong. In Oct. of 2015, he began to feel pain throughout his entire body. By November he began to stumble and by December he was falling and could not get up. Local doctors could not tell me what the problem was. In January of 2016, we went to a CIDP specialist and he immediately diagnosed him with CIDP and was admitted to hospital the very next day. Much testing confirmed CIDP. The doctor felt with IVIG and PT, my husband could possibly walk with a walker within six months. This never happened. There was one complication after another. The doctor informed us that this was the most severe and rare case of CIDP that he had seen. By June of 2016, when things were not improving, the doctor felt there they were missing something that was contributing to his illness. After testing some lesions that had appeared on his face and arms, my husband was diagnosed with t-cell lymphoma cancer. Fortunately it is treatable with a pill once a week.
Because of his weakened immune systems there have been many other complications and hospital stays for various reasons. Life is tough since he could no longer work. I still work full time but somehow we have survived two years of this. I don’t know how much longer he could take being bedridden. He was a very independent and proud man who took care of the family. He dislikes that he has to be cleaned, repositioned in bed, lifted onto his wheelchair and dependent upon everyone else.
We take one day at a time but this illness is so unpredictable and there is no prognosis.

I hope there is some peace and comfort for you and all those who suffer.


#19

There is a prognosis for improvement! This disease can come and go. Active and remission with totally unpredictable timing. At my worst I could go to a grocery store because I couldn’t walk far or stand long. Something miraculous happened and I went into remission, regained much lost strength and 9 months later ran a 5k!
This is a possibility of regeneration because it happened to me. The pain from nerve damage didn’t stop, but the progression did! The muscles returned. I never had bad emg tests they showed low end of functionality. Reflexes were always present, I could always feel everything, nothing went dead.
If your husband would like to chat by phone he can call me. I can’t give my phone number out on this site but email me at ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■