Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

When does it all stop?


#1

Being newly diagnosed with CIDP iam notmeven realllsure what it is, how it works, how it affects me, etc, my doctor walked into the room after all the tests and simply said you hav CIDP, I asked h if it was a misdiagnosis,from my MS, no, and he pretty much walked out after that. No info, no matter xplnation, no nothing. I am so tired, everything hurts, I can’t see, more so than usual,lately I have tried to keep my feeling ngs of anger, depr sin, rage and just sheer frustration to myself. Now, I hav been cleaning up from
The vely hurricaine Irma, and truthfully, I am tired, I have nothing left to give, to my chi
Daren to my fie ds, or even my boyfriend. I am out of ideas,


#2

Dear Kris66,

First, I am sorry for your recent diagnosis of CIDP. It is always a shock to hear that you have been diagnosed with anything and when it is something as confusing as CIDP, it often makes it more confusing.

Take a deep breath and begin learning about CIDP from this page. Read everything about what you have and what is going on with your body. You will learn a lot from reading through the information that is available here.

Next, you need to see a specialist in treating your disease and soon. This is best treated early and aggressively if that is what is recommended. We here can only strongly urge you to find a neurologist that works with CIDP patients and knows how to treat them.

Your stress that you have around you will compound the symptoms you have. I wish you didn’t have those in your life right now, but this is when you need to ask family and friends for help. You MUST concentrate on your health and have them pick up with the other things that you have going on.

Finally, come here and ask questions. There are wonderful people here that will try to answer your questions, give you support and have gone through what you have going on as you progress through the process of CIDP.

Please feel free to reach out to me and use this forum as a helping hand whenever you need some support.

-Ross39


#3

I agree with Ross 39. The last thing you need is your own mind telling you negative thoughts. It won’t help. I got hit hard with CIDP Two years ago and was paralyzed, wheelchaired and now using a walker splints cane the whole process. I have Severe nerve pain 24/7. Burning debilitating tears I just need to keep all of myself up again. I don’t mean to make this sound sad or lonely. But what I do do is close my eyes and go to happy moments in my life. Learn all you can about CIDP. Google has great information. I am so sorry you have lost everything due to the hurricane. Try to focus on your own strength, determination and courage. My prayers are with you if you ever want to talk. 607 425 5006. Talking to others have help me and them. Caring friend Jutty


#4

Hi Kris -

I am sorry about your recent diagnosis. For me, having more information was really helpful in making treatment decisions, and even in making me feel less anxious about what might lie ahead. It can definitely be overwhelming - one step at a time sounds trite, but really is a good approach. If you contact the GBS/CIDP Foundation International, they can send you a new patient packet that gives more information about the disease. https://www.gbs-cidp.org/cidp/

There are also some recommendations as far as treatment resources - centers of excellence. I am assuming you are in Florida, like me, because you mentioned Hurricane Irma. I recently moved to a new area and am struggling to find a good neurologist, but the person who treated me in Fort Myers is fantastic. Her name is Dr. Lenay Santana at Florida Neurology Group:http://www.fngmd.com/

I have been managing CIDP since April, 2016, and am about 60% improved - it can be difficult, but I hope you can stay positive.

I also hope you feel better soon


#5

Hi Kris,
I am so sorry about your recent diagnosis of CIDP.
It is not an easy disease to treat or to deal with. Please get all the info you can!! Google, go to the Library, get flyers, anything you can grab and READ about it!!
I have had CIDP for 18 years. I am 54 years old and now I have been in remission for about a year and a half. Never in my wildest dreams did I think I could have been in remission after all these years.
I was on IVIG for 16 years every month then went to every two weeks. Always helped. It is LIQUID GOLD!!!
I have been on steroids for 18 years. Sometimes high dosages and now 15 mgs daily. I take Cellcept 1000 mgs daily and Gabapentin 4800 mgs daily (high dose).
I do have major nerve damage and pain.
I have detoxed from 150mcgs to 25mcgs of Fentanyl Duragesic patches, this past winter. It was awful but was able to pull through it. I detoxed because of being on too high of dose and possibility of my body becoming addicted to Fentanyl and wanting more and more.
I am telling you this so you can maybe get ideas on what you can take. Not that I am a doctor and everyone is different, but this is my daily regiment and it keeps me going! I am on other meds but these are the most important for CIDP.
A couple of ideas for you. Make sure you walk. I try to walk 3 miles about 3-4 times a week!! I try to keep my stress levels down. Sleep is very important, 9-10 hours a day. Know your limits, don’t push yourself. That doesn’t mean that you sit in a corner all day or not go grocery shopping, it just means if you are tired take a nap then go shopping.
Number one important thing is: GET A GOOD NEUROLOGIST THAT SPECIALIZES IN CIDP!!!
Best of Luck to you!! If you have any questions please feel free to message me.
Shannon


#6

Hey Kris,

You said it in a nut shell,  I sorry, it never ends!!

But it does get better. Like everyone here tells u, get a good neurologist! Someone u can talk to, and someone who listens and believes u.
There is a combination of drugs that will control the pain and u just have to work back physically. U
have to find what worked for u swimming, yoga, or just walking. Good luck!
Kim


#7

Hi, I want to say thank your unfortunate everon s r sponsee. This week has been a bit craz for me, no schol…ninteaxh MS sciences… and then hurrcainnIEMAbasically blasryed or blew alway my birthday, and I Gus’s even I have a breaking point. Thanks for all the sensible advice,
I actually for th most part have good doctors, center my neurological has treat d CIDP several tim s and with my MS which is aggressive and not nice, has gen out on a limb and ytrested me aggressively, it was just his off handed way he handled the whole thing. Maybe I wanted him to tell me it was wrong and I didn’t have MS and CIDP. It only ne or the other… but for me it’s not going to be the case. I have been though all th tears, second, ev n paid for a third option out of pocket…lol

I know my family is going to hate me, not accept this diagnosis,or whatever you want to call it, but, I’ll be okay, I can deal with anything, I hqv been in a wheel chair since feb of 2001 and woke up paralyzed from thandomylusis com th b cl down I. July 2015, but my fri do lov m for th most part, my paerbwe lovesme, atleasr he says he does but I do t wa t to tie hm to me out of pity…
I went back to looking at wheelchair sports this week when we got power back, if I qmgoing to b alive, I am going to liv my life…

My biggest issue will be my pain management doc, I don’t thank no he knows much of anything about CIDP, so I a, going to take your suggestion and see if I can get some info for both R.E.M. and myself.

I had actually asked for some a while ago f o her but n ver got any, maybe I’ll get lucky this time… again

Thanks for everything’s nt I really appreciate it🦋


#8

Sorry guys I am visually impaired and try to type by touch, please forgive another no stupid I writ. :sob::see_no_evil:


#9

No it doesnt end but it can get better.i was diagnosed with ms in december 2011 my neurologist sent me for a 2nd and 3rd opinion.ms was ruled out cidp was the correct diagnosis. I dont think you can have both ms,and cidp.you might want to get a 2nd opinion the results of a brain scan ruled out ms.i was treated with steroids for 3 years and worked for awhile but became ineffective. I now have plasmpharesis every 5 weeks or so,and has worked for me so far.my family,and friends have been my greatest support through out all of this hope this helps you a little good luck


#10

lol I wish that were true, you can’t have MS and CIDP, I have spent some time reading and there is a correlation between one immune system disorder and braiding others… I have had several opinions, both on then MS and CIDP, I would be estatically happy to give up ne of the diagnoses. I really do appreciate everyone and the support and opinions and advice I have found here. Hopefully my neuro and my pain management doctor will get together and find a reasonable response to the pain…


#11

I have a different opinion of Dr. Santana. She is the Nuerologist, who misdiagnosed me from the beginning. I kept telling her I was getting worse and trouble with walking and she never scheduled any tests. She passed me off to another Doctor in the group, who got me a walker and also didn’t order any tests. By the time I got into a new group and saw Dr. a Bond, she ordered a spinal tap and a EMG. Turns out for 2 years I had CIDP and no one would listen to me. So I have to disagree with you about Dr. Santana. I’m happy she helped you but, she hurt me tremendously.

Pam


#12

I’m also newly diagnosed and I’m seeing a counselor, to help me deal with the mental aspect of the disease. It has helped and made be feel a little better but, I would be lying if I said, I’m not depressed about this disease and how hard everything is to do anything. No one can understand how it feels to know, that your life has changed and things you took for granted, now become obstacles that you need to find a Way to complete.

Good luck,

Pam


#13

We all have each other don’t we. Celebrating my CIDP three year anniversary this month. Try explaining this rollercoaster to my 4-year old son who has more energy than a runaway train. Take it one day at a time.


#14

I’m learning that important lesson. I take one day and don’t worry about what’s going to happen. I’ve been fighting so long for a diagnosis and still with disability. I just want to stop fighting and start controlling my life. Good luck with your son, I have 21 y/o twins. I do remember that age. Thanks for helping.

Pam


#15

Kriss, you will feel better, you will regain your energy, stamina and control of your life. The treatments for CIDP will reduce the pain and you should also see a pain management doctor as your neurologist that treats your CIDP is reluctant to script the pain medications you might need in addition to your CIDP treatment.
At least you now know what’s wrong so you can get the help you need. IVIG infusions helped me reduce pain and over a few years into remission. Damaged nerves can be very painful and that’s what you are dealing with. Gabapentin and Lyrica can help. Hydrocodone and fentanyl patches can increase pain relief as needed.
Find a neurologist treating CIDP, find a pain management doctor, find help and help yourself too.

May God bless you and heal you!
Bill