Relapsing After Seven Years Of Somewhat Control

I am so sorry to here about your recent relapse. That does sound very scary. My 20 year old son has CIDP and was diagnosed last Dec 2008. He has had a relapse since he was dx. That relapse put him a wheelchair. he is now able to walk short distances but the recovery is very slow going. he has not had vision problems. I hope your new problems go away fast and you start getting better.

Hi Caryl,

I’m truly sorry to hear about your relapse and the vision problems. Unfortunately, I don’t know enough about CIDP or relapsing to provide any information. I wanted to write to let you know that you are in my prayers and I hope you receive answers and healing soon.

Please take care,

Tina

Hi,
So sorry you are going through this again, do you have progressive cidp or relapse remitt? How often do you currently get ivig? Is it a load or maint dose? My 12y/o,( at the time of dx 1o) has cidp. Since you have not been on in a while, check out posts by Alice, regarding an aggressive approach that she is doing as well as some dialog by Pam H who did the chemo part but not the stem cell part. Good luck to you.
Dawn Kevies mom

Caryl,
I do remember you from the old forum, as I have been active for 7 years now on this sight. Sorry to hear about what is going on with you. At my absolute worst, I was unable to walk, raise my arms or hands off of the bed, had almost no feeling below the neck, & no use of my hands. The numbness did start to go into my face, numb chin & lower lip, also part of my tongue. But then they put me on steroids & I got just enough back to get out of Mayo (after 3 months) & live at home with a power chair & my mother taking care of me for 2 years. I was also getting regular IVIG & PE at this time. After I got the cytoxan treatments, I began to see improvement fairly rapidly. I never had any eye involvement, but did have issues with swallowing & my voice was a just a whisper for the first year.

It sounds like now you might have some CNS involvement going on here? I think it’s time for more agressive treatment, there are some very interesting threads going on with the use of cytoxan & also one long thread about rituxan. I would suggest having your neuro research these treatments regarding what type of CIDP you have. It sounds like relapsing remitting, in that IVIG kept you stable all of these years, but now might be the progressive form.

Randy, Emily, I & others have had luck with the high dose cytoxan treatments, the treatment I underwent back in 2003. I am a little better now than you were at your best, I still need a cane for balance outside the home, but can walk long distances like around a grocery store, or a small museum. For places like Disneyworld, etc. I take a transport chair; push it like a walker, then have someone push me at times to rest. Read the threads on these treatments & email me if you would like more info or want to chat…

Blessings, Pam

Hi, Caryl;

Brain stem sounds like MS, not CIDP, and the vision problem would go along with that, and maybe the facial pain and swallowing issues. The cranial nerves that innervate the eyes, mouth, face, etc come directly from the brain stem. They’re actually not considered peripheral nerves, and so the demylenating mechanism is different. I think.

As bad as MS can be, they have great drugs for it, and all my friends with MS and vision problems had complete recoveries. One of my friends was completely blind for a few days, and her vision came back slowly but completely.

I’ve relapsed a bunch of times (well, like 3–seems like a bunch), and complete recovery for me takes 6 months to a year. By complete I mean as complete as it’s gonna get, not marathon-running complete.

I get severe facial pain also, but mine is from trigeminal neuralgia. I also have difficulty swallowing, and occasional choking–that’s also a side effect of GBS/CIDP.

good luck! marie

Mumgo 181 really knows their stuff. I agree about the CNS vs peripheral. It sounds like MS should be considered. I know that ivig is sometimes used for MS so maybe that is why it helped you. I am sad to see that even at your best that you were not doing a little better. I am curious about the comments from the other doctors that you were not in a wheelchair sooner. Many people with cidp function normally for years. As a matter of fact, there was a man who posted a few weeks ago that said he did run some type of marathon!

[COLOR=”Sienna”][FONT=”Book Antiqua”]I am concerned that there might have been misdiagnosis of many years’ duration?

From the National Library of Medicine and the National Institutes of Health:

In regard to Baer testing: “Abnormal test results may indicate a hearing loss, multiple sclerosis, or stroke.”

For all of us there is the possibility of misdiagnosis. We are dealing with diseases not adequately researched nor taught. [/FONT][/COLOR]

Hi caryl,

I don’t remember you specifically, but something rings a bell in my little head. I’ve been here for a long time and was working out my own issues in 1999-2002, about the same time as you. I also have had some success in not getting much worse, but I quit working. That really helped.

Now I am going back to work part-time, and am having some problems, surprise there huh?

I hope things get better for you, I know where you are at. I’ll be thinking of you.

Dick S

Glad to have you back, Caryl. At times, I have also taken a break from the forum, but recently it has been very interesting following Alice’s protocol. Back in 2002 when I underwent my cytoxan infusions, I was criticized by many here for undergoing such an extreme treatment. But these were people who got their monthly IVIG & led fairly normal lives. I sat day after day, month after month in a power wheelchair, with not even the use of my hands to keep me occupied; couldn’t even hold a book to read, nor could I turn a page. I posted over 1500 posts on the old forum using just one finger, with my hands all bouncy from steroid infusions I was getting back then.

Alice feels I would have gotten back to 100% had I had my cytoxan infusions earlier. But I was actually only 10 months into the beginning of my CIDP when I started them. She had CIDP much longer when she began this treatment. We all respond differently to this illness, I knew in my heart that once I lost the use of my feet & ankles, that it was permanent. Even when Dr. Peter Dyck from Mayo (named this illness CIDP & wrote the first book on it), told me I would be completely cured in a year’s time, I knew otherwise.

I wonder what you would be like today if you & your oncologist had tried cytoxan 10 years ago… a more healthy & normal life? Not having all of those IVIG infusions? Hindsight can be cruel, would this have been a good decision or a bad one? One just never knows what to do… I wish I had known the stock market tanked back in March, I wanted to buy a lot of steel stock & would have tripled my money by now (and sold the stock.) Like I said, hindsight is just that, hindsight.

Hello Caryl,

The cranial nerves, except the olfactory and optic nerves, are peripheral nerves. CIDP could explain the difficulty in swallowing and facial pain. It is unlikely to explain the vision symptoms you had, though. While three of the peripheral cranial nerves (III, IV, and VI) are responsible for the movement of the eye and therefore might be related to blurriness (printing as black blobs, from your description), the rest of the vision problems really do sound like optic neuritis. It is possible to have optic neuritis independently of any other neurological disease, but it would be a good idea to keep on top of it. It can take a while for the inflammation to abate, and that might explain why the vision is still not what it should be.

Godspeed in your treatment,
MarkEns

Anyone with vision problems,
I first noticed a problem with my vision when I read, a small black dot appeared on the print as I read. I then started to get the swirling flashes of light and blurred vision.
What the optometrist found was bleeds in the back of the eyes not caused from the eyes. Further test showed blocked carotid arteries on both sides of my neck. One side was totally blocked but by a miracle had rerouted itself, the other side was 98% blocked.
The surgeon was able to get the blockage out.
Dr. said it was unusual to get symptoms with vision from carotid arteries, he had not seen this before, it is also unusual for an artery to reroute itself.
I do not mean to scare anyone but wanted to tell the experience I had with my vision to encourage those with vision problems to see an optometrist.
Problems with vision can also be a symptom of something else going on.
Shirley

I am happy you to meet you. i wish your return was under better circumstances. wow I was a possible mser years ago because of central nervous involvment there were lessions in my cervical spine ” the demyelinating process as seen in MS or TM” I went into spontainious remission for 5 years and my most recent MRI doesnt even show a scar from that lession. MS has been ruled out as best as it could. I have also had to undergo a VEP because of the neuropathic pain behind my eyes. I couldnt even cry with out the cramping pain. I hope this is passing for you. my question is how would one know the difference between MS and CIDP with central nervous involvment. the MS dx criteria I believe that lessions have to present in separate time and space as in two different areas of central nervous involvement and time as in two different relapses. I wish you all the best and look forward to reading your posts about how you are doing.