NEW to CIDP HELL
AnonymousJuly 28, 2010 at 7:17 pm
my name is Jason, I was diagnosed with GBS in February and now it is CIDP. I am here to learn as much as I can without going insane. So here is my story.
I started to have numbness in my toes in the middle of February. On February 19th I called my Nutritionist to inform her of the numbness in my toes, why you ask my Nutristionist because in 2006 I had Gastric Bypass Surgery and lost and maintained a loss of 300 pounds, but there was always the threat that the body may mal-absorb vitamins and minerals and cause Neuro issues. So I was told by the nurse to come by Monday and get blood work done. in the meantime however.
Went to the Laundry and towards the end of doing laundry I did not feel well and had to use the washers and dryers to hold myself up as I folded clothes.
Went to the Grocery store (walmart) and had to hold onto the shopping cart in order to stand up.
Drove to the doctors office and had to hold onto counters and railings when I not in motion, as long I was in motion I was fine. The numbness at this point was mid way up my foot.
When I went in for the bloodwork the nurse told me the doctor wanted to talk to me.
She looked at my feet, which were ice cold and purple my toes were numb and she instantly thought GBS, the call the Neuro group at the Hospital(which will remain nameless, pending lawsuit I have). They told her it was [B][I]”too Minor”[/I][/B] and not to come in unless it got worse.
Bloodwork was done and the waiting begins
Me and my partner cried
finding it hard to walk and be balenced, still waiting for bloodwork to come back
We cried all night
numbness above ankles much more difficult to stand and walk still awaiting bloodwork.
We cried all night again
Thursday (My Birthday just turned 35)
Drove to work in a bad storm, only 3 miles away went through a big puddle of slush and cracked the radiator, smoke bellowing out of the engine. Called AAA and waited on the side of the road after the tow truck took the car and waited for my co-worker, stumbled and fell in puddles of slush and eventually just gave in and sat in the snow in my suit.
I don’t mean to drag this out but it is becoming theaputic for me to type this. I called my sister to see if she could come down to take me to my appointment with my primary care doctor ( we only have one car me and my partner ) She came down and by this time numbeness was to my knees and I could barely walk out to her car.
My Primary care also thought it was GBS and called over to the Neuro group and TOLD them I was coming into the ER now and be ready and so we went.
Got right in through the er and amazing had no wait.
It is a learning hospital and so I had to repeat alot of tests for many different interns, residents, students whatever you want to call them. A lumbar puncture was done and confirmed high protein. they got me up in a room and started IVIG treatment.
This IVIG treatment went on for 5 days and during the 5 days they ran MRI, CAT-SCANS, EMG, many many more tests.
Well After 5 days of being in the hospital and getting very few answers and still no official diagnosis
Ok, so i am discharged to inpatient pt rehab and am there for 2 weeks, my strength was coming back and able to walk pretty well with a walker they made an AFO for the foot drop in my right foot. After 2 weeks there I am now outpatient PT and walker around with a cane.
Middle of April
My AFO was making a lot of noise when I walked so I had an appointment to have it adjusted and now I was noticing that I was favoring my right leg and starting to have to march with the left leg. I told my concern to the PT and she watched it for a few visits and by that Friday she told me that I had to go back to the Neuro group that my left foot was now dropping. I called them at 9am on Friday and waited and waited for a return call in order to get in to there office. never got a return call.
went to the ER and told them what was going on and waited and waited and again had student after student have me run through my story and run balence tests again and again So after 6 hours of waiting in the ER the Neurologist that I put a call into on Friday decides to finally call, I explained to him I was already in the hospital awaiting for the Neuro team to come up. He and his team finally came up after another 2 hours.
They drew more blood and admitted me to the hospital once again and they started another 5 days of IVIG. During the next five days I was able to get up and do some walking but very little. Around the third day I began to get severe pain in my toes. They gave Norco for the pain as days went by the pain got worse. They day I was discharged to only outpatient PT I was prescribed a low dose of Lyrica 75 for a week and then Lyrica 150 twice a day. This did barely anything for the pain.
End of April
By this time my Partner and I were getting very frustrated with the Neuro dept again because the Lyrica was not doing me any good. I made an appointment with my primary care as a follow up to being in the hospital. My Primary care increase the Lyrica to 225 twice a day and some more NORCO. We also got a referral to another Neuro Group and was able to get in that same week.
We met with the Doctor and he made some adjustments to my meds and ordered an EMG and another MRI. During the appointment he told my partner and I that the CIDP was through my arms and hands. He asked me if I was aware of this and neither one of us were.
The MRI was done meds had been adjusted and there was no real change in anything in my body. The day the EMG was done the results from the MRI came in and found a small mass in my hips ( ah ha ) maybe we found the problem.
They scheduled a catscan and full body xray to see what the mass was.
The weekend before I was suppose to go and get the catscan and xray my partner and I decided we needed to get away for a weekend and we made plans for Vermont.
That Friday we went to PF Changs for dinner and I went to lift my glass and my hand fell to the table lifted it again and same thing happened, we looked at each other and cried in the restaurant. The next day we had to go to the bank to sign some checks and I could not put my fingers together to hold a pen. So we continued to Vermont and had a great time.
Sunday night we stopped by my mothers house to pick up our baby (dog) Coco and my legs were very weak again and I could barely stand.
Monday I called all my doctors to find out if I should go to the ER or if I could get an appointment with any of them to find out what is going on, could get any return calls.
Went to the ER of a different hospital where my new Neuro group works out of. With in the hour the Neurologist on call from group was there and with in hours all the tests were run and I was admitted again to the hospital.
They started another 5 day treatment of IVIG and during these 5 days I could not use my hands very well, I could type for a few minutes at a time but my strength would die very quickly.
I spents three and a half weeks in the Acute Rehab unit there with a great group of PT, OT, Nurses and techs. I am currently at a sub acute rehab unit still trying to rebuild my strength and get stronger while my partner is moving us to a wheelchair friendly first floor unit.
My job is on hold, making very little money being in NY state. Did I mention I fall asleep all day long and cant sleep at night.
I JUST WANT MY LIFE BACK
LIST OF CURRENT MEDICATIONS as of July 27
Amantadine 100mg twice daily
Lovenox 40 mg
Prilosec 20 mg
Colace 100mg twice daily
Ferrous gluconate 324 twice daily
Nortriptyline 30mg daily
Vitamin b complex with c twice daily
Lyrica 225 twice daily
Vitamin D 50,000 3 times per week
Xanax .25mg 4 times per day
NORCO 10/325 x 2 4-6 times per day depending on pain
Benedryl 25mg bedtime
AnonymousJuly 28, 2010 at 10:28 pm
I am so sorry to hear your story but you have definitely come to the right place. Please read read and read on this website and you will not believe the stories. I have a three year old with cidp. You might be wasting your time with a lawsuit as cidp is extremely hard to diagnose. I had to go all around that globe and back to get our diagnosis. I believe that you are on the road to recovery. The people on this website are the experts and have helped us so much. They are awesome and can help you. It breaks my heart to hear you cried as it brings back a lot of memories. We have cried and cried too. It is not a death sentence but it isn’t great either. You can do this and the people on this site can support you every step of the way. Please keep us posted. Time heals and not everyone has this for life, some people go into remission.
July 28, 2010 at 10:58 pm
Glad you found us, sorry it’s under these circumstances. Welcome to the family. We walk this journey together. It’s a great group of folks who know what you’re going through and care.
Please keep in contact.
AnonymousJuly 29, 2010 at 12:08 am
Reading your story is very similar to mine & so many others here on this web-site, only I was much, much worse for over a 2 1/2 year period of time. I deteriorated in a matter of 6-8 weeks from numbness of the hands & feet, to totally unable to walk & virtually no use of my hands or my legs. Many on here have been paralyzed almost totally & remained that way, even after treatment with IVIG, plasmaphersis, or solumedrol. Others get their first IVIG & are almost totally functional again. I was inpatient at Mayo In Rochester, MN & originally dx with GBS, 6 weeks later it was changed to CIDP.
If I were you I would forget the lawsuit, as CIDP is extremely difficult to dx, besides it is considered an “orphan disease,” or very rare. Doctors win over 80% of lawsuits anyways, something most people don’t realize. I would instead expend your energy on fighting this illness, trust me, you will need all the energy you have just for that. Fatigue is one of the biggest complaints of CIDP. I am over 8 years out & continue to fight the fatigue daily, as well as many residuals. Good luck…
AnonymousAugust 2, 2010 at 3:45 am
Yes i liked all Pam wrote!
Yup it sure can seem unfair having to deal with CIDP not to mention having lived with other medical conditions. Unfortuantely CIDP isnt tooo specific on who it inflicts itself and learning to life with CIDP is a HUGE thing.
You are fortunate to have a partner you can draw strength from – unfortunately CIDP is something that will probably be with you in some form for quite some time.
As bad as it seems at the moment to be trying to get stabilised and see some light at the end of the tunnel – one day you will probably look back and realise it has made you stronger in ways you wouldnt have preconceived – or that you will develop talents/ skills in other areas that you may not have pursued just yet! Often people find values and perspectives change also as they learn how to deal with CIDP.
I too was youngish (33 year) 3 years ago, when I first noticed CIDP symptoms – with 3 children 6yrs and under, and progressed rapidly to quad status. The next year was spent finding a combination of treatments that worked and rehabilitating. I am now back to my former physical level – probably a bit stronger as am running regular half marathons and triathlons (hopefully soon if all things in my favour i can add half ironman to my recent achievements) etc as well as doing all those jobs listed under a busy happy mums job description, and working partime as a nurse. As i said though i have fought back 3 times from quad status, had my own power wheelchair and home modified as doctors thought i would be lucky to walk again let alone run a few steps (and about another 12 times of near quad) but everyone is different in their response to treatments etc.
Sometimes it is all about taking one day at a time, or even 1 hour at a time, stay strong and positive, draw your strength from whatever you believe in and continue to belive in yourself so as not to give up.
I always found you never had too look far to find others in a worse scenario.
Your energy is so precious at this time – dont waste it on anything other than dealing to CIDP and being the best you can!!
all the best
AnonymousAugust 3, 2010 at 7:06 pm
Welcome to your GBS/CIDP family. You are not alone & you came to to right place. I’m Almost 9 yrs. into CIDP. I agree with all the above! Been there, praying for you.
Hey! Keep on reading every story, every post, every blog. Read all about STEM CELL TRANSPLANT!
AnonymousAugust 6, 2010 at 11:54 am
HI my name is Dawn I was diagnosed with CIDP and started the IVIG treatments. I feel really bad from my treatments. I don’t have the pain just feel like I have the flu and I am so very tired and have a foggy feeling in my head. I was wondering how long these symptoms normally last..
AnonymousAugust 6, 2010 at 4:53 pm
Welcome; we are glad you have joined our group, even though we are sorry that you have to.
You have articulated your experience very well, and I hope that others who read it, the professionals too, will be enlightened in their knowledge of treating patients with suspected GBS-CIDP. For every one of us who speaks out, there are probably hundreds who don’t or didn’t get listened to, and suffer or even die undiagnosed.
“And if I make my bed in hell, Thou are there”.
God bless you in your journey of recovery.
AnonymousAugust 8, 2010 at 9:05 pm
i was diagnosed with GBS on may 28 and went thru a 5 day treatment if IVIG. and felt alot better . how ever 3 week after i got the dreaded pins and needles feeling again and lost most of my strenght again. and now the docs tell my thats its CIPD. and have now gone thru another 5 day treatment of IGIV again ending july11. im feeling better except still somewhat weak and numbness in my toes. its now August 8. i was in to see my neuro last tuesday went thru another nerve conduction test. they are now starting me on a two week regime of ivig starting on august 16. alltho i was in today for a treatment of ivig 50g to try to keep my strength up so i can make it to august 16. they also started me on prendezone 50mg daily.
Ive been reading alot of the posts here since mid june and its been helpful for sure in answering alot of my questions. there is a great bunch of people here. and i hope in time i’ll be of some help to others on this road of CIPD hell.
take care all for now
AnonymousAugust 24, 2010 at 12:56 pm
To all that have posted. I stumbled on this site two weeks ago and have found it to be both a source of incredible knowledge, as well as a guide to what is happening in my body.
Both a sense of relief and great sadness overtake me as I read the journeys of each of you.
I find it is the simple things I miss. Walking up a flight of stairs, or better yet walking down a flight of stairs! Walking on a beach, riding a bike, throwing a football with my kids.
I am unsure of where I will end up, or how fast I will get there, but I do know I will stop at nothing to stop the progression of this disease.
My heart is with each of you, I hope we all find our peace at some point during this journey!
August 24, 2010 at 9:23 pm
[QUOTE=dsellars02]I finished IVIG last week and I had the hardest time with it.. I went out and had a few glasses of wine and got really sick… The nurse told me I could.. Does anyone else have problems with it?[/QUOTE]
My first ivig treatment gave me3 a horrible headache. The second time around I made sure to drink tons of extra water–plus i cut down on ther benedryl amount and had a much easier time with it. Lori
AnonymousAugust 26, 2010 at 8:58 pm
They are going to give me 3 benadryl this time and fluids before my infusion and I am going to drink lots and lots of water. So here I go again Sept 6th my second round of infusions and I am having surgery on my foot the Friday before wow that should really knock me on my butt.. I have torsil tunnel syndrome in my foot because I fell down stairs and fractured ankle last march and it caused allot of damage…
AnonymousAugust 27, 2010 at 7:51 am
Every hospital seems to have a different method to prevent headaches from the IVIG. My first round at Albany Med they gave me 2 benedryal and a loritab 30 minutes prior to the IVIG. Stpeters hospital for round 2 gave me only Benedryl.
Either way I did not have any reactions to the treatment
AnonymousAugust 27, 2010 at 10:02 pm
Combined with the Tylenol scale too! Each doctor has their own approach to how much to administer, and…how often. Keep a singular specific diary about when you feel ANYTHING Good during or after infusions, then WHEN #of days afterwards something comes ‘back’. That way your doses can be tailored or your infusion schedules be adjusted.
For example? Day 8, concrete feeling in legs returns, can’t walk far w/o rest; or, day 11 pins&needles at fingertips; day 16 pins and needles whole hand and wrists. You get the drift. It helps the docs get a handle on how much is working and for how long.
It’s frustrating at first, but with some adjustments you mite just find the right combo of Benedryl and Tylenol then Doses of IVIG to work best for you!
Keep trying and keep faith that this mite actually work!
AnonymousAugust 28, 2010 at 12:38 am
Great tip (reminder) re: diary. It’s what I’m always gonna’ do, but never seems to get done. I’ll start now though and dedicate a specific notebook to it. I’d say I’d open a file for it on the computer, but I fear it would just get lost in so much other stuff. Thanks again.
AnonymousSeptember 19, 2010 at 5:14 am
Well about a week ago I saw my Neuro and he conducted another EMG
He said that there really wasn’t any change between this test and the last one done in April. That which too me means alot of change. During this time period I had relapsed and lost the use of my hands and arms for a couple of weeks and became extremely weaker.
I am currently using a wheelchair and rollator to get around. This is much different than a few months ago when the last test was done.
Last week my Neuro started taking me off Predisone and put me on Cellcept. He reduced my Prednisone from 60 to 40 and put me Cellcept 500 2 times a day.
I am really hoping that this does work and makes it worth the side affects, I have not been able to sleep at night anyway (I cant stay awake during the day) and I am swelling up quite abit.
The Neuro is also starting me back on IVIG in home treatment. They are going to do in home treatment for a five day treatment once a month for the next 6 months ( Insurance just approved it Friday)
Some of the nerve pain has come back in my feet as well so I am hoping that all these side affects will eventually go away
Anyone have any experience with Cellcept.
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