Relapsing After Seven Years Of Somewhat Control
AnonymousOctober 19, 2009 at 2:47 am
I’M SURE NO ONE REMEMBERS ME. I HAVE NOT POSTED IN 4 OR MORE YEARS. I HAVE BEEN RECEVING GAMMUNEX EVERY FOURTH WEEK A MONTH. I ORIGINALLY BECAME ILL IN JUNE OF 1999AND WAS MISDIAGNOSED UNTIL FEBRUARY 2000 WHEN I FOUND MY NEUROLOGIST WHO ALSO REFERRED ME TO A HEMATOLOGIST/ONCOLOGIST. THEY BOTH REVIEWED MY HISTORY. THE HEMATOLOGIST/ONCOLOGIST RIGHT AFTER I TOLD HIM ABOUT MY HISTORY SSAID “YOU HAVE CIDP”AND BACK IN 2000 WENT AGRESSIVELY TREATING ME WITH IVIG FIVE DAYS EVERY 4TH WEEK OF A MONTH. THIS WAS AN UNUSUALLY AGRESSIVE TREATMENT IN 2000. THANK GOD FOR THE TWO OF THEM. HAD TO FIGHT MEDICARE FOR THE AGRESSIVE TREATMENTDUE TO THE COST. i’VE GONE THRU IG SHORTAGES BUT SOMEHOW THEY FOUND THE IG.
I HAD A RELAPSE IN 2002, BOTH LEGS WERE PARALYZED AND ARMS AND HANDS WERE EXTREMELY PAINFUL IT CLEARED UP IN 4 MONTHS. I CONTINUED WITH THE IVIG AND SOMETIMES PREDNISONE.
ALTHOUGH I USE N ELECTRIC WHEELCHAIR TO GET AROUND TO SHOP AND EVEN TRAVEL FROM THE WEST COAST TO NEW YORK. i AM HOWEVER ABLE TO WALK AROUND MY APARTMENT. i TELLPEOPLE I CAN DEFINITELY WALK BUT I CAN’T WALK INDEFINITELY.
PAIN HAD ALWAYS BEEN A PROBLEM. i WAS REFERRED BY MY TWO GREAT DOCTORS TO A PAIN MANGEMENT SPECIALIST (bOARD CERTIFIED ANESTHESOLOGIST). HE IS VERY KNOWLEDGEABLE ABOUT THE LIMITATIONS OF NERVE PAIN CONTROL BUT HE HAS HEKPED TO MAKE MUCH OF IT BEARABLE.
NOW AFTER ALL THIS BORING STUFF I GET TO MY CURRENT RELAPSE. AFTER ALLTHE SORT OF CALM YEARS: PAIN, BALANCE PROBLEMS AND I’M SURE YOU ARE ALL FAMILIAR WITH THEM. MY MEUROOGIST WENT TO A CONVENTION AND ALTHOUGH THERE ARE NOT MANY OF US MANGED TO FIND 2 ITHER NEUROS TO TALK TO AND THEY BOTH WERE AMAZED THAT AFTER NINE AND A HALF YEARS I WAS NOT WHEELCHAIR BOUND .
BAD RELAPSE NOW! jUST WAS DISCHARGED AFTER 3 WEEKS IN THE HOSPITAL. AFTER A STRANGE TEST CALLED BAER TEST (IN THE DRS OFFICE) IWAS TOLD THAT IT SHOWED A DEMYLINATED NERVE IN MY BRAIN STEM. THAT GOT MY ATTENTION. BRAIN STEM IS SCARY!!! i ALSO HAD NOTICED THAT I HAD ON OCCASION DIFFICULTY SWALLOWING AND SORT OF PAIN SENSATIONS IN MY FACE. THREE WEEKS AGE I WOKE UP AND I HAD DIFFICULTY WITH MY EYES. IT WAS AS IF SOMEONE HAD TURNED THE CONTRASTR KNOW WAY DOWN ON THE TV. COULD SEE FORMS, LETTERS WOULD DISAPPEARFROM WORDS AND PRINTING BECAME BLACK BLOBS.COLORS WOULD COME AND GO, FLASHS OF LIGHT WOULD APPEAR. THAT’S WHEN A NEURALOPTHAMOLOGIST HAD ME ADMITTED TO THE HOSPITAL. THE NERVES IN MY OPTIC NERVE ARE JUST INVOLVED. 3 IVS OF SOLUMEDRO;L AND THEN 60 MGS OF PREDNISONE BY MOUTH.THEY HAVE HELPED WITH THE VISION BUT IT COMES AND GOES.
THIS IS WHERE I NOW SIT!!! SCARED AND DEPRESSED. HAS ANYONE OUT THERE HEARD OF THIS BEFORE? i HAV E GREAT DOCTORS AND NOW HAVE ADDED THE NEURO/OPTHAMOLOGIST. ALTHOUGH MY DOCTORS ARE ENCOURAGING DOES ANYONE HAVE A HAPPY THOUGHT TO OFFER?
I PROBABLY HAVE BORED EVERYONE TO DEATH, BUT i HAVEN’T POSTED FOR 5 OR 6 YEARS. HOPE TO HEAR FROM SOMEONE.
AnonymousOctober 19, 2009 at 11:17 am
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.
AnonymousOctober 19, 2009 at 2:08 pm
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,
October 19, 2009 at 2:58 pm
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
AnonymousOctober 19, 2009 at 10:33 pm
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…
AnonymousOctober 20, 2009 at 2:10 pm
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
AnonymousOctober 20, 2009 at 4:39 pm
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!
AnonymousOctober 20, 2009 at 5:55 pm
[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]
AnonymousOctober 20, 2009 at 7:54 pm
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.
AnonymousOctober 20, 2009 at 10:58 pm
[B]FIRST I WANT TO SAY HOW THANKFUL i AM TO EVERYONE WHO TOOK THE TIME TO READ MY RATHER LONG THREAD. yOU GUYS ARE WHAT THIS
ORGANIZATION IS ALL ABOUT!!
MY GOODNESS THERE ARE PEOPLE WHO REMEMBER THE “EARLY DAYS” THE OLD SITE. IT HAS BEEN SO TRICKED OUT THAT i’M TRYING TO FIGURE IT OUT. nELIEVE IT OR NOT i WAS ONCE A “SENIOR MEMBER” ALMOST DAILY. GOING TO THE UK SITE FOR THE MOSY RECENT INFO ON FLU SHOTS yES OR NO [/B].THE BRITS BEAT US ON THIS ONE. I AM GLAD TO SEE ALL THE WARNINGS HERE IN THE US.
AGAIN, THANKS TO ALL FOR YOUR REPLIES. i HAVE BRRN TESTED FOR MS AND OTHER AUTO IMMUNE DISEASES BY AN AI SPECIALST FROM UCLA. ONE OF MY HEMOTOLOGIST/ONCOLOGISTS IS SORT OF THE HEAD PF UCLA ONCOLOJY/HEMOTOLOGY RESEARCH. I TOO WAS HOSPITOLIZED FOR ALMOST 3 MONTHS WITH PARALYSIS ON 1999.
AN ADDITION TO MY HEMO/ONCOLOGISTS RESEARC GROUP TOLD ME HE WAS INTERESTED IN CIDP AND WAS GOING TO REVIEW ALL 10 YEARS OF MY RECORDS. hE ROLD ME THAT HE HAD DONE A QUICK LOOK AND WAS INTERESTED IN THE UPS AND DOWNS OF MY LEOKOCYTES DEPENDING ON MY IVIG SCHEDULE. THE NEURO WHO DID THE BAER TEST TOLD ME THAT IT WAS BASICALLY A HEARING TEST BUT SHE HAD DONE HER NEURO RESIDENCY PROJECT ON THE MAPPING TO DEMONSTRATE THAY IT COULD BE USED FOR BRAIN STEM MAPPING IN A BROADER WAY. SHE HAD ACTUALLY INCLUDE CIDP AS ONE OF THE DISEASES IT COULD BE HELPFUL IN TREATING.
SHE TOO IS A NEW ADDITION TO MY NEUROS PRACTICE. i AM 10 YEARS OLDER AND SO AR E MY ORIGINAL DOCTORS. I AM REALLY HAPPY TO BE MEETING THE NEXT GENRATION IF DICTIRS WHO ARE VERY FAMILIAR WTH CIDP AND ARE CHALLENGED BY IT AND THEY HAVE JOINED PRACTICES THAT SUPPORT THEM IN THEIR RESEARCH. AT THE MOMENT,i AM THEIR LAB RAT.
OY OS NICE TO SEE A DOCTOR WHO ACTUALLY IS HAPPY TO SEE YOU. THE NEURO WHO DID THE BAER TEST TOLD ME SHE WAS SO HAPPY I WAS THERE AND SHE HAD PESTERED THE HEAD OF THE PRACTICE TO ALLOW HER TO SEE ME. IY IS SO GREAT TO SEE THEIR ENTHUSIASM.
BY THE WAY, THE ONCOLOGIST/HEMO DR. AND I HAD TALKED ABOUT CELL CEPT AND CYTOTOXON MANY YEARS AGO. HA HAS USED THEM MANY TIMES FOR ONCOLGY. HAS RECIEVED AWARDS FOR HIS CANCER RESEARCH. HE WILL FORGET MORE ON ONE DAY THAN I CAN LEARN IN MY WHOLE LIFE.
BY THE WAY THERE HAS NEVER BEEN ANY CNS INVOLVEMENT. THIS WAS TESTED UP AT UCLA’S NEURO LAB. AND IT IS REALLY NOT UNUSUAL FOR A CID PATIENT TO DEVELOP DIFFICULTY SWALLOWING OR CHOKING. NOONE IS SEVERLY AFFECTED YET SINCE IT SEEMS TO BE INTERMITTANT.
o HAVE BEEN EXTREMELY LUCKY IN FINDING MY DOCTORS. THERE WERE SOMR MISSES AT THE START.
AGAIN I WANT TO THANK ALL OF YOU FOR YOUR TAKING THE TIME TO WRITE TO ME. THE LATEST MAILING FROM THE FOUNDATION WITH POSTER OF 30,000 GABDS REACHING OUT GAVE ME THE COURAGE TO REACH OUT AGAJN.
A NOTE TO DICK. THOSE WERE TOUGH YEARS FOR BPTH US. sP MUCH CONFUSION, LOVED HEARING FROM YOU THOUGH.
aFTE REREADING THIS, THINK I SHOULD PRACTICE MY”TOUCH TYPING” AGAIN.
THANKS FOR TAKING ME BACK. I’LL TRY TO BE LESS LONG WINDED. I JUST NEEDEDA PLACE TO GO WHERE N ONE SAYS “NEVER HEARD OF IT”.
lOVE ALL OF YOU. cARYL
AnonymousOctober 21, 2009 at 12:20 am
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.
AnonymousOctober 21, 2009 at 1:17 am
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,
AnonymousOctober 21, 2009 at 11:33 am
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.
AnonymousOctober 22, 2009 at 2:11 am
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.
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