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Living with Polyneuropathy CIDP, GBS, & CMT

Frustrated Father


#1

Hi. First post here. Thanks for allowing me to join. Hope I don’t get asked to leave after this post.
My daughter is 31. She has CIDP. It started as GBS 4 years ago. The nightmare of a lifetime begins. 3 months of being intubated and totally paralyzed in an nuerological ICU. Another 2 months in a step down ICU and then rehab. We were constantly being told she would bounce back 85-90% from GBS. Everything we read, heard and believed was wrong. Every doctor involved was completely wrong. Wheel chair bound, disabled, and unable to care for herself She had to move in with her mother in Phoenix. (I was on an work assignment in Chicago at the time.) I did 7-10 day bed side vigils while she was in the hospital, alternating with her mother.
I could write a horror story about her life since.
I attend the Symposium for CIPD/GBS in San Antonio in 2016. I had the opportunity to hang out with a few guys who had CIDP while there for a few days. I personally spoke to every ‘expert’ speaker at the 4 day conference. I spoke to lots of people attending with CIDP. All this time and information and education has done nothing to help Sara. I spent time with Dr Burt from Northwestern discussing the success they had with stem cell and CIDP. Later learned it would cost $200,000-250,000, no guarantees.
Anyway. Sara finally got into see a new neurologist today, after waiting 10 weeks. He read the report from old neurologist and thinks Sara will be a demanding hypochondriac patient. She is a desperate sick young woman. He lays it on the line what he will do and what she can expect and if she doesn’t like the ground rules get another doctor. Sara is just devastated. How could a doctor who doesn’t know her be so callus??The last neurologist was a complete ass. He would only see Sara once every 3 months. No exceptions. Or just go to ER. She lives on IVIG every two weeks. He decided in October to switch it to every three weeks. Sara starting throwing up 5-8 times a day. Then her right eye was unable to focus, gradually she could no longer control it and had to start wearing a eye patch. Oh…did I forget to mention horrific pain!?Finally after weeks of pleading and getting the insurance advocate involved the neurologist agrees to see her. He refers her to an eye doctor and back to her primary for gastrointestinal issues. Refuses to let her go back to two weeks on IVIG. Then around the beginning of December the pharmacy does not get an order for IVIG meds. Sara again pleads for help. Neurologist refuses to see her. The front desk says the pharmacy got the prescription. Sara ends up going almost 5 weeks with no IVIG. You all know what that means.
Man. Not sure what I expect posting here.
I’m wondering if there is some way to force neurologist to ‘care’ for patients with an incurable disease?
Thanks. Frustrated Father.


#2

It’s hard. Please get your doctor to try plasma exchange if she is still deteriorating badly with Ivig.


#3

I’m SO sorry she (and you all) are going through this. I have a child that age and would be devastated, as I’m sure you are. I have lifted her in prayer. Surely, someone can guide you to better doctors in Phoenix. The ones you’ve been to sound very insensitive, Shame on them.
I’ve had CIDP for 20 years but have never gone through the intense issues that she is. It’s a very hard road, getting in to see a good doctor is epic.
There are CIDP Centers of Excellence, I see there is a support group in Phoenix. There may be a doctor nearby that they can refer you to or just going to these meetings might help her caregiver tremendously. I see there is a support group in Phoenix. There may be a doctor nearby that they can refer you to or just going to these meetings might help her caregiver tremendously.
Good luck!
Here is the info:


#4

I very rarely go on this site, but I saw your post and just had to reply. I can tell you that you are unfortunately not alone. My CIDP took 8 months to be diagnosed, with many refusals from doctors to even see me. I finally got in to see one neurologist who said you have severe muscle weakness, severe neuropathy and nothing I can do to help. I went home and cried. Then more pushing to find another neurologist. I had finally gotten an appointment with a rheumatologist because my toe was so red and painful and I was told it was just arthritis in my toe. I demanded that my primary care refer me to a rheumatologist. By the time I saw him, my legs were red and swollen to my knees. He said I am positive you have gout that has been untreated for so long along with an autoimmune disease. He asked me if I minded him calling a neurologist to get me in ASAP. I wanted to cry tears of joy. Someone cared. I was seen the next day. He looked at me and said I think I know. Being a nurse, I said what? He replied CIDP. Man, bingo. I knew what it was. After many blood tests, many MRI’s and many EMG’s and finally a spinal tap with protein, he made the definitive diagnosis of CIDP.
I see you are in Florida? This neurologist is in Savannah. He is young, caring and is I feel brilliant. I also did look into Vanderbilt hospital that is a Center of Excellence. My daughter works as a PA there in cardiology so I could see if she can get further information.
Good luck and lots of prayers. Also, please, please, you and your wife need to take care of yourselves. My husband has been an excellent caregiver, and now he was hospitalized for 4 days and still not doing well. I think it all started with stress and now I have taken a step backwards after caring for him the last 6 days. God Bless


#5

Hey Steveflorida,
Firstly, No, you will not ‘get asked to leave after this post’.
I am sorry to say this but for many of us with rare conditions your daughter’s situation of being listed as a “demanding hypochondriac patient” is disappointingly common, often this can be due to a diagnosis, rather than being a direct diagnosis, being an elimination of other conditions ie If it’s not ‘x’ and it’s not ‘y’ then it must be ‘z’. Some medicos like to have a direct diagnosis. They want scans and tests that confirm a positive for such conditions. When they do not have such results hypochondria is the common fall back position.
For some people, like myself, symptoms fluctuate massively. I may have a bad day today, but next week my symptoms can be minimal. I can never tell. Often when I, eventually, get an appointment with a neuro and go to the appointment my symptoms may be less. He looks at me and says “There’s nothing wrong, go home and just take some paracetamol…” It makes me want to scream. My wife is the only one who sees me at my worst because I hibernate in a darkened, silent room in agony on those days.
Some medicos have the personal empathy/bedside manner of a house brick. Some have the attitude of “Well, I’m the dr, so I know…” but when they don’t know they are less than willing to admit there knowledge is lacking and therefore put it back on the patient ie Hypochondria. I am often saying “…as if we choose to be in this situation. Who on earth would choose this? Not I, that’s for damn sure…” But here we are. So we manage the best way we can. They have very little comprehension of our reality.
I, again, am often saying it would be easier if I’d lost a limb, people would be able to see the problem, but being ‘invisible’ often others just make a judgement.
Ignorance is bliss. If you don’t live it, you wouldn’t know the realities.
So please be assured you are not alone with all of this.

I agree completely with the suggestions put forward by the other members here. Networking with other people in your area is a must. Support groups are a great place to start. Others who have been in a similar position to yourself will know of what services may be available within you locale and how to access them. Use these services to your advantage. If someone has a pcp who has an understanding of the realities you and your daughter face, make an appointment with them. Get a referral to specialists who again have an understanding. Trying to educate medicos who do not have that understanding is near on impossible (I know, I’ve tried). There maybe physical therapy available, there maybe counselling services available, there maybe care assistance available etc. Use them all to your benefit, that is what they are there for. Some people think “ohh I don’t need them at the moment” so they don’t bother, but then when they do need them there can be a waiting list. It can be better to make contact with such services so that you are aware of the processes before such need may arise. Also many of these services network between themselves, so although a specific service may not offer the exact service you need, they know who will. This is also where a medical advocate can be invaluable. Often they know of the medical networks available.

Please do not be a stranger. We do not have all of the answers, not at all. We are a patient support group and we know from personal experience (not a textbook) what this reality is like. Come talk to us.

Merl from the Moderator Support Team


#6

Hi I feel your suffering I am a father with CIDP going on my 4 th year I might be able to help you and your daughter. But there is to much to to put in a post. I would rather listen and talk. 607 425 5006. Elmira New York. Until then my love goes out to your daughter Sara and you.o


#7

Thank you, Steve


#8

Thank you all. I’m not sure how to reply to your individual replies, so to everyone…thank you.


#9

Steve, at the bottom right of each post is an arrow with ‘reply’ in grey. If you click on that ‘reply’ just below that specific post, you will be replying to that post.
The blue ‘Reply’ button at the bottom of the page will post but it does not specifically list which post you are replying to.

Hope it helps
Merl from the Moderator Support Team


#10

Oh ok thank you


#11

Go to GBS/CIDP www.gbs-cidp.org for the closest center of excellence and take your daughter there requesting an appointment ASAP as your daughter’s future recovery is totally dependent at getting her better medical care. If you can get appointments set with multiple neurologists at the same time or around the same times, so that you don’t start from zero another time you get disappointed by the next neurologists .
Pain management doctors need to be employed for pain reduction meds. Your neurologist won’t script pain meds needed to treat cidp pain. Just accept that statement don’t try to understand it. Get started on this right away and don’t feel like you need to be nice back to these rude doctors.


#12

I would try a cipd center of excellence. The visual problem could be a sign of myasthenia gravis. I would go to a great eye doctor preferably a neuroothalmologist. IVIG would also treat MG. Please consider both. I feel your frustration and hope you can find someone you can trust.


#13

Hi Steve -

This just sounds awful! I am so sorry for what your daughter and family are experiencing. I saw that you are also here in Florida. I am in the Orlando area and had a very hard time finding a competent neurologist. My doctor is not a CIDP expert, but he has been reliable in helping me manage my symptoms. His name is Dr, Augustine Joseph. At least you will know that he has more than 1 patient with this condition, although mine is not nearly as severe. There is also a CIDP Center of Excellence in Tampa at USF. Several people have recommended the neurologist there - his name is Dr. Gootch. I hope that you can change doctors - I had to after the first one here in Orlando screwed up my IVIG dosing so badly that I had a relapse. Everyone needs an advocate - I am glad your daughter has someone like you to help with this.


#14

Dear Frustrated Father,
I feel your pain and frustration. Please don’t give up! Please stay focused and look for better alternatives. Some doctors are completely incompetent. I have a couple of suggestions for you.
Someone already mentioned plasma exchange.
That had been suggested to my son if treatment with steroids didn’t succeed.
My son was diagnosed with GBS at the age of 9, then the first doctor suggested he could have CIDP or Myastenia Gravis. He had no idea what was going on. The only good suggestion he had was to see a hematologist. His hematologist never answered my phone all, and I’m glad he didn’t.
Somehow we ended up in the hands of an amazing pediatric hematologist and a better neurologist. Four years later, I can say my son is doing good!!! It was a scary ride and I still suffer every time he gets a sore throat because I think his immunesystem will overreact again.
Please Frustrated Father, go see a hematologist. These disorders are autoimmune, you need to work with the immune system (hematologist) as well as the neulorlogical side. Please!
I wish you and your daughter health and peace of mind. It will take time, but don’t ever give up!!!
I was told in Dallas there are amazing specialists. I didn’t want to go that route anymore because my doctors were doing a great job and they are empathetic also. Empathy!!! That’s just as important. We see Dr Mahendra Patel hematologist and Dr John Seals neurologist in San Antonio. They are pediatric doctors. In Dallas we would have seen Dr Susan Iannacone. I believe she’s also pediatric. Maybe you can call and ask for a refferal? Look for better and more empathetic doctors. The process is hard enough! Doctors who deal with patients like they’re just a number, should be out of the picture.


#15

Great comments


#16

Thanks for your input


#17

Thanks for your advise. My daughter lives in Phoenix. I hope to move her here one day


#18

Steve you have my prayers for this terrible disease CIDP, I was Diagnose with CIDP about two years, the pain in my feet, ankles and shins at times were unbearable. My primary doctor is a in my opinion a miracle worker with compassion. First thing after some tests he referred me to a Neurologist who has some experience in auto immune diseases. After reviewing my record he suggested I go to Shands Hospital in Gainsville Fl, I currently reside in the central Florida area. I agreed he help me to contact Shands as he had a contact there that he went to medical school with. They got me in within two weeks to a Neurologist who specializes in auto immune diseases. The people at Shands are the most compassionate healers. Anyway they developed a plan to attack my CIDP, they brought in experts in the field. The plan consisted of Plasma exchange and Chemo. The program is three days per month for five months. You must understand the reality of this disease there is no cure, but with the plan the potential is to either retard or to put it into remission to allow the damaged nerves to regrow. My first treatment was December of 2018. Of course as a human we expect instant results. The doctors said that I may not notice any changes for at least four or five months maybe longer. At least there is a plan. The doctors there work closely with my Primary and my Pain Management doctor. At least they care and work on my comfort too. WOW,what a concept? Yes do I have bad days? But at least I know that something is being done. So I guess I have been blessed to find a team of doctors and nurses who care and are doing all they can to help me coup with this terrible disease. Good luck Steve to you and your family.


#19

Thank you. I decided to start praying, again. You all, are in these prayers.


#20

Hi,

My name is Alya and from Dubai, the United Arab Emirates. I joined here because ai was in deseprate need for a community group to support as GBS patient. I survived in less than a year and I went back recently to my normal routines.

My friend on the other hand whom I only met over the phone because she heard about my case is having a severe condition. She is still not walking in more than two years. She tried everything. I was lucky enough recebtly to meet a one of a kind Korean scientiest who claim to cure nervouse system condidtions. I took an appointment for her this Friday and will finally be able to meet her. His work is magic, my husband had a secere injoury in his spine and he walked out from the first session without any pain and who could bend easilu. I will keep you updated how it goes and if there is hope I can connect you with him. I will share his studies and what he believes in.

Alya

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