TO RHONDA AND RYAN, and others interested in how BAD CIDP can get
TO RHONDA AND RYAN, and others interested in how BAD CIDP can get
AnonymousAugust 8, 2009 at 2:38 pm
Hi All, especially Rhonda and Ryan,
First, Rhonda and Ryan, I am SO pleased that the Plasmaphereses seems to be working with Ryan. It will be a GREAT relief if he continues to improve.
To respond to a post you did, in my aqua therapy post:
“My 20 year old son, Ryan, does aqua therapy or I should say did, he currently is taking a break while he is getting plasma pheresis since he has a perma-cath in. He can’t get it wet. but once he is done and it comes out he will go back to it. he loves it he says it makes him feel free because he can do things in the water he can’t on land, like walk. (he’s is now in a wheelchair).
Ken if you don’t mind me asking, how long have you had CIDP? and how did it get so bad that you are dying from it? My son just got sick in Oct 2008 and was dx in dec 2008 he has a very aggressive form of CIDP and so far IVIG hasn’t worked so we are doing PE. He has been steadily going downhill and ended up in a wheel chair in April. We are praying PE will work.
He has been reading your posts and wants to know more about your situation. He didn’t think he could die from this disease. I guess we knew you could but had not heard anyone say they were at the end or getting close to the end. its very scarey.
With that said I am glad you are enjoying the aqua therapy and tha tyou have a doctor who takes such good care of you.
We used to live in Ocenside, my husband was a marine and stantioned at Camp Pendleton, Ryan was born in Fallbrook. We loved it there the weather is the best and I miss Alberto’s (the carne asada’s are great!!) or used to be. We were stationed there for about 8 years. We went to the beach daily. I miss it.
take care of yourself
Rhonda (Ryan’s mom)”
First, as noted in many websites, there are the three UGLY sisters: CIDP, MS, and ALS. All considered sister diseases, MS affects the Central Nervous System and affects approx. 1 per 700 people. ALS affects both the Central Nervous System and the Peripheral Nervous System, and affects approx.
2 people per 100,000 people. CIDP affects the Peripheral Nervous System, and affects approx. 1 person per 100,000 people.
The reason I mention the above, is that first, CIDP is a rare disease/syndrome, rarer than MS and ALS. You can see that by seeing how many members are here on this website– 3816 members. Not a lot of people since this is an international website. Over the years of me being on this website, I have seen about 1 person a year pass on.
So, there are about 5% of those with CIDP, that the normal protocol of treatments for CIDP, (IVIG, steroids, Plasmaphereses, Immunosuppressants, Chemotherapy), doesn’t work. And the progression of CIDP continues.
But the worst part is when the CIDP hits the autonomic system, (autonomic neuropathy or dysautonomia).
The BEST way to see if the CIDP has hit, or possibly will hit your autonomic system, is to have a skin biopsy done. It is a very simple procedure, done by your doctor, (my neuro did it), where they numb a small area on your affected thigh, then insert in and out quickly, a “thick needle”, and send it off for testing. If the result comes back as, “small fiber atrophy”, there is a good chance it has/it will hit your autonomic system.
And if you are in the 5% of CIDP people that treatments do not work, then the CIDP does nasty things to your body, as it affects your autonomic system.
I will not be dieing from CIDP–I will be dieing from what CIDP has done to my body and the autonomic system.
ALL PART OF THE AUTONOMIC SYSTEM:
=The CIDP has hit my phrenic nerve, which controls the diaphragm, and giving me hypoxemia. Though my lungs are okay, I cannot breathe well because the diaphragm doesn’t work, so now my breathing has gotten shallower and shallower. I am on oxygen 24/7 now and I have a bi-pap to assist when I find it too difficult to breathe. My Pulmonologist and my Primary Care Physician both told me that I am dieing, and that both have told me that as my breathing becomes shallower and shallower, and find I have to rely on my bi-pap more and more until I find I need it 24 hours a day, I will then most likely have to get a tracheotomy and go onto a respirator. They told me I will most likely die from getting a bad flu or pneumonia, and I will be too weak, especially being on a respirator, to fight it off, and pass on.
=The CIDP has hit the nerves controlling my bladder, giving me a neurogenic bladder, thus I have a foley catheter, and no feeling at all in the groin area.
=The CIDP hit my optic nerve, ending up with Horner’s Syndrome, and photophobia.
=The CIDP hit the nerves controlling my heart, giving me tachycardia and syncope. They had a cardiologist do all the cardio testing–the results were that the heart was perfectly fine, and that it definitely is the CIDP hitting the nerves controlling the heart, to give me those two things.
=The CIDP hit my digestive system, (dysphagia and gastroparesis and esophageal dysmotility). It hit the nerves controlling the stomach, so that when food comes into the stomach, the stomach doesn’t work, so I must take 3 different pills to get the stomach to empty. It also hit my swallowing system, so that I choke more and more often, (I have gone through a “Swallow Test”, where it showed the food going into my windpipe). My Neuro., Pulmonologist, and Primary Care Physician have all told me as the choking gets worse, it will be soon time for a feeding tube to be put in. It also hit my bowels, causing dysmotility.
=I have also gotten Hypothyroidism, and Anemia since having CIDP.
I could have put all the above problems in “Doctor Speak”, but I put it in a definition we all can understand.
So, it’s not the CIDP that’s knocking me off, it’s what the damage FROM the CIDP has done to my body.
I would suggest that anyone that has had problems with the treatments for CIDP, get a skin biopsy, to see what might possibly happen.
And again, I wish Rhonda and Ryan much hope that the Plasmaphereses will continue to improve Ryan’s condition.
AnonymousAugust 8, 2009 at 5:57 pm
Thank you so much for the response. I know that had to be hard for you to lay it all out there like that. I will continue to lift you up in prayer. I knew that CIDP could effect your central nervous system but didn’t realize just how bad it could get. I will be watching Ryan and we may look into the skin biopsy.
Again thank you for telling your story.
Rhonda & Ryan
AnonymousAugust 9, 2009 at 1:07 am
Ken – I am so, so sorry to hear how badly you are affected by the CIDP. You are in my prayers (along with many others I’ve come in contact with here at this site). I am amazed by you – I’ve read other posts you’ve made and would have NEVER guessed you had so much damage from CIDP. Like Rhonda, I know this must be very difficult. Thank you for sharing.
AnonymousAugust 9, 2009 at 2:20 pm
Ken, how long have you been diagnosed ? Did you start out slow, not responding to treatments or did it come fast for you ?
I really appreciate you sharing everything you’ve learned and know and all that you go through.
We all wish the best for you and I, too, keep you in my prayers. I really, truly, admire you.
AnonymousAugust 9, 2009 at 6:10 pm
It started out slow, which is why it took so long for the final dx…wasted time..of about a year before they started the IVIG treatments. I kept getting told they had to cross off what I DIDN’T have on the long list of Neurological Diseases/Syndromes/Problems, and be told, “okay, thanks for the new symptoms, and see you in two months so you can tell me your new added symptoms…”. I was very aggravating in the beginning, not knowing what this was going on in my body. They at first thought I had MS…but that got crossed off the list.
As far as the skin biopsy, any doctor can perform it. It is very simple. A quick jab in the numbed, affected thigh, and it is done, and sent off to a lab.
I didn’t have the skin biopsy done until about the 2nd or 3rd year into the CIDP, when other things started going wrong.
I kinda think that anyone who has had CIDP for a while. should get the skin biopsy done. It would be good to know what might be in store for each person, and kinda give a push to the neuro, to try and put the CIDP into remission, before it does too much damage to the autonomic system.
AnonymousAugust 10, 2009 at 12:41 am
As Ken has said, CIDP in itself is usually not fatal. But I have been on this forum for 7 years & have lost many dear friends to this illness. I did not meet most of them in person, but kept in touch either via email or more oftentimes on the phone. Most people with severe cases cannot type a lot of posts; they are fortunate to get one post out. I always targeted those who posted with the most severe cases, not the relapsing remitting form who did well with IVIG, nor those who had the very slow progressive forms (sorry Dick).
Some of you might remember Leon, a pastor who passed at age 59 with a very severe case of CIDP. He had twin 5 year old grandsons who he wanted so much to play catch with. The last time we spoke he could only move his shoulders minimally; he died of respiratory failure that winter. Then there was Sandy from New Zealand, whose husband in his early 40s had a terrible case & she was on the forum a lot asking for help. He passed when their two children were quite young. My friend Robert, an orthopedic surgeon from New Jersey (never wanted anyone to know he was a doctor.) He was in his late 50s & ended up getting an infection in his IV. We always talked about getting together to “walk” some day when he finally could again walk. He was such a wonderful man who helped me out so much when my husband was going through two back surgeries. Terry, who I could only call at certain times in the evening, as he could only lie in bed all day & I had to call when his wife was home so she could bring the phone to him. Brandy, one of our most prolific posters for years, lost her dear husband Frank in his late 50s to CIDP. Dear Doc David, who helped out so many of us here on the Forum. He was such a boost to so many of us at our own worst times.
I could keep recalling people we have lost, but these are the worst cases, most of you do quite well. But we should never forget those who we have lost & never treat this illness lightly. I have two dear friends right now who are in bad shape, Tony, an ex-marine who has suffered with a bad case of CIDP since age 35 & is now 46. He has had over 350 treatments, but to no avail. I just got a letter from him in the mail saying “Help,” My old roommate from Mayo named Barb who has never left the wheelchair or regained the use of her hands. Please say a special prayer for them, that they might get just some slight improvement. I say a prayer for all affected by this cruel illness every night & for all of those I have loved & lost through the years…
God Bless, Pam
AnonymousAugust 10, 2009 at 4:39 pm
hi all I just want you all to know how much I admire you. This disease is terrible and you all go through so much and its a little different for each of you.
We do plan on looking into the skin biopsy to see what comes of it. I want to know if Ryan has to worry about other stuff.
again thank you for all of the info you share about yourself. even if you think it isn’t much it does help someone.
AnonymousAugust 14, 2009 at 2:25 pm
Thank you for sharing your struggles. You will be in our prayers. Our daughters bladder has been affected from the very begining. Do you mind sharing how your bladder was affected in the begining? She has been dealing with this illness for almost 9 yrs. and I have never heard of a skin biopsy. Sounds like we need to look into it.
AnonymousAugust 15, 2009 at 1:27 am
Thanks for your note. I was recently reminded of KathyC and her struggles. And the fellow from PA, I forget his name, but he got hit hard, and never really bounced back.
As many others have said, it might not be the CIDP, but its complications that are the final straw. the medications are very hard on a body, and the emotional damage a chronic disease does can be equally severe.
Regarding ALS, there is a specific test that rules out ALS, and the actions are similar, but different enough to discriminate.
CIDP is not a fun diagnosis. I don’t want it. But I cannot give it back so I must learn to live with it.
I need off my soapbox.
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