Newly Diagnosed
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September 1, 2011 at 11:29 am
(Bare with me as this is kind of long.) I am newly diagnosed and my neurologist has told me he doesn’t think I understand how serious my case is.
May 2010 – Gastric Bypass Surgery
September 2010 – Became pregnant with our first child
December 2010 – After a very complicated pregnancy, we lost our son, Austin, due
to a rare genetic blood clotting disease that we did not know I had until it was too late.January 2011 – I started developing tingling, numbness and soreness in my feet.
Over the next few months, these symptoms moved up both of my legs. My feet are usually always cold to the touch. I began having hot sensations through my legs; it felt as if someone was taking a blow torch to my legs. This feeling would last from 10 seconds to an hour or so.
I began started to have difficulties walking. I was having more bad days than good days. Stairs were not and still are not even an option. I am unable to lift my foot as high as a small step without having to lift my leg for assistance. I began to feel as if I was walking in space, every time I would try to take a
step, my legs would look as if they were having a seizure. They would shake uncontrollably, fighting me to put my feet down.July 2011 is when I decided enough was enough, I waited too long and I needed medical care. I went to my doctor who immediately suspected polyneuropathy. He did a blood panel and everything came back normal.
At the next appointment, just one week later, I had gotten even worse. Movement was almost impossible, the numbness doesn’t go away.
August 7, 2011 – My PCP sent me for an MRI of my lower back, looking for any kind of nerve compression. Results came back normal.August 8, 2011 – I was at home alone while my husband was working. Unfortunately, we don’t have any family around us, we moved from IL at the beginning of 2011 for a better job for my husband. Our family is in Oklahoma and Illinois. We are in Colorado. Sorry to get off topic .. I was in my chair about to make some lunch and when I went to get up, my legs did not move. I realized then, I had no feeling. I called my mother trying not to panic and she told me to call my doctor. He told me it was time to go the emergency room, so my husband rushed home and got me to the hospital.
The ER doctor did a CT SCAN of my brain to check for any tumors, stress, or nerve compression. Results were normal. They decided to admit me.
I stayed in the hospital from August 8 – 17, I spent 5 of these days in Neuro ICU. During my hospital stay, I saw Dr. Cohen, my neurologist, every single day.
Day 3 of my hospital stay, they started me on IVIG treatments to see if I would
make any progress while they figured out a diagnosis.I had a MRI OF LOWER BACK – Results were normal.
Several blood work panels – Results were normal.Each day Dr. Cohen did a reflex test. Some days I would pass, some days I would not.
I showed poor results when he did the EMG.
Diagnosis: Chronic Inflammatory Demyelinating Polyneuropathy. I had 4 IVIG treatments during this hospital stay, did fairly well working with physical and occupational therapy. August 17th, I was able to go home with the assistance of a walker and wheelchair. I continued to make progress, able to walk a little more and a little bit further each day.
August 22 – Just 5 days after being released from the hospital, I was in the kitchen making my plate for dinner and my legs got a quick hot, burning sensation run through them, they went numb and I lost all feeling and all movement. Fortunately, my husband was home to get the chair underneath me.
At my follow up with my PCP, he wanted to readmit me for another treatment, sent me to the hospital to be admitted. Unfortunately, my neurologist, Dr. Cohen was on Jury Duty so they weren’t able to contact him and the neurologist working the hospital that day said he thought it might be soon for IVIG and sent me back home, telling me we were going to take the risk that I would not get any worse before I saw Dr. Cohen on August 26th (just two days later). Ten minutes into my appointment with Dr. Cohen, he told me to sit tight. He came back a few minutes later saying the hospital had a bed waiting for me, he was going to re-admit me.
This past Friday,I went back to the hospital. He ordered a “CIDP complete workup” which was just a ton of blood work. Results came back normal except that IGG level was more than double what the normal level is. Before receiving an IVIG, the nurse wanted to make sure he knew it was high, just as a precaution. He came in to inform me that the higher it was, the better, and the longer the chance of the treatment lasting. I will have 3 treatments while I’m here, one more today, and one more tomorrow, with the possibility of going home tomorrow. I have already started to make progress again. I was able to walk (with assistance) to the shower and back to bed and not have as much pain as I’ve had before.
I am currently on 300mg of Neurontin 3x a day, 80mg of Prednisone, Percocet, and several vitamins that I take from my gastric bypass surgery.
He did tell me that I could expect to come in to the hospital every few weeks and stay for 2-3 days for more treatments for a while.
Sorry my story is so long. I made it as short as I could. I am keeping my spirits as high as I can, Dr. Cohen has told my husband that he doesn’t think I understand the severity of what is and has happened. I expected to get up and walk out … not learn to walk as if I’ve never walked before. Maybe it just
hasn’t sunk in yet … -
September 1, 2011 at 2:53 pm
Hon, I am so sorry for all you have been through, and are going through now.
Giving you lots of gentle hugs right now (((( ))))It seems to me that the docs have twisted things around… it was they who didn’t understand how serious your case was from the beginning. It’s really preposterous that all their tests came back normal, but yet your body was obviously presenting extremely abnormal symptoms in all that time. This has happened to many of us, and just shows how little some docs know and do about these cases. Well, things are finally happening along the right course in your case, and that’s good.
And don’t despair; we are all in this confusing and difficult situation together. A lot of adjustment is necessary as we face this condition, but life goes on. You’ll see. Check around on this site and you’ll find us living our lives, even though we have a ‘new normal’.
Praying that you will find and learn practical ways to cope, and for the utmost benefit from your medical treatment. -
September 1, 2011 at 7:45 pm
I’m sorry you’re having such a hard time. Your symptoms are similar to mine as well as the labs…most all mine was normal except elevated sed rate, CK and flucuating CRP. I also flunked the ncv/emg. i saw a neuro 4.5 years ago and at that time i had no reflexes, he told i had either chronic fatigue or fibromylagia and sent me home. your situation has progressed a lot faster than mine but post ncv i really went down hill. had the test on a friday, could not get out of bed sat or sun. dr. said he’s never heard of anyone having after effects from the ncv… i hope you’ll be able to get back home quickly but i’m glad you’re getting looked after round the clock.
hang in there…you’ve found an amazing group of people here. i only joined recently and have found so much support here, it’s been amazing.
keep us all posted on your progress. -
September 1, 2011 at 8:24 pm
Thank you JC. May I ask what is ncv? Last night was my first night without pain medicine since I’ve been home (Sunday I came home) and I don’t know how I made it through the night. I was up all night and at 4:30am, I decided trying to sleep was impossible. I am feeling better pain wise this afternoon but I have spent the majority of the day in my chair or in bed, using the walker has been a tough job today.
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September 3, 2011 at 4:08 pm
NCV is short for nerve conduction study, the part where they put the elctrodes on you then send an electrical current through the nerve to time how long it takes the current to get from point a to point b. Haven’t you had that done? The emg part is where the insert the needle into the muscle and record action potentials, i believe. how are you doing today?
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September 3, 2011 at 5:30 pm
[QUOTE=jc10]NCV is short for nerve conduction study, the part where they put the elctrodes on you then send an electrical current through the nerve to time how long it takes the current to get from point a to point b. Haven’t you had that done? The emg part is where the insert the needle into the muscle and record action potentials, i believe. how are you doing today?[/QUOTE]
Ah yes, yes! I knew this! I did have this done my first time in the hospital. I’m doing. I’m learning baby steps. I’m learning how to do laundry by myself. 🙂 My pain is not too bad today, although, I’ve probably hit my limit for being on my feet for the day so the evening will probably be spent in my chair. I wish we lived closer to our family because it’s just impossible to find someone to help you when you need it.
I may start venting here…. ugh! People! My husband works 12 -14 hour days and when he comes home, his job doesn’t stop. Before, being a housewife, I did everything around the house and catered to him. Now… I do what little I can to make it easier on him. I feel bad that my amazing husband gets almost no rest, lugs me, my wheelchair and my walker around and never frowns upon it. He does this all with one arm! He carries me when I need to get to bed quickly because I’m hurting so bad. He’s amazing!
Last night after dinner, the plan was to go get my medications picked up from the pharmacy. I didn’t make it through dinner without needing to be in bed so I asked my sister in law if she had any errands to do… maybe she could pick me up and we could go together… like we always did before I got “sick”. She said she didn’t have any errands to do, which was fine.
I offered to pay (very generously) either of my sister in laws to take me to the pharmacy – I even said, I won’t do my other shopping if you don’t have time, but I can’t go without these medications. They both said no, they are being lazy today. BUT… they want to have 15 – 20 people at my house on Monday for a cookout and leave me to clean up the mess when I can barely cook dinner for my husband and I … that opened a can of worms. I have not once asked for help from them for anything … I haven’t got a text from one of them since the first admittance to the hospital asking how I was doing … it’ll be alright.
Everyone has said that you will see a different side of people. How do people care before you get “sick” but don’t care afterwards or during? In the end, my brother in law is generous enough to take me to get my medicine, without hesitation my husband says. What a day!!
How are you doing today? 🙂
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September 3, 2011 at 11:40 pm
OK I want the phone numbers of your sisters so I can call and ball them out! That’s just lame.. I don’t have much in the way of family but I used to always dream about how nice it would be to come from a larger one….that’s not always the case though, is it?! Maybe you and your husband could call a family meeting and have everyone sit down and discuss exactly what has been going on with you and let them know how you really NEED some help with getting things done. Let them know your husband needs some support too, he can’t do it all and when you have family close by, why should he have to?!
Kudos to your hubby!!! He sounds amazing, like some others I’ve heard about on this forum!
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September 4, 2011 at 10:20 am
Oh yes, I tell my husband every day how amazing he is and I will tell him every single day that he’s the greatest husband in the world until he’s convinced!
We have TONS of emotional support. In January, right before I started developing symptoms of this nasty disease … we moved to Colorado from IL for a new job for my husband. All of my family is in Illinois … 1,000 miles away. I talk to my mom every day and I keep a blog that I update daily for them to read and keep up on how things are going. My husband’s family lives in Oklahoma and they pray for us every day. They are just as emotionally supportive as my family is.
Then… you have his two step brothers that live here in Colorado. They are the ONLY people that we know here. Each step brother has a girlfriend and two VERY BADLY behaved children. The one sister in law, Christine, became very jealous of the attention that I was getting from their employer (the owner of my husband’s company came to see me at the hospital a few times with his wife and the ladies at the office sometimes come over and help out around the house or take me to my doctor’s appointments)… anyways, Christine used my symptoms as her own and went to the emergency room (while I was still admitted). Yes, she stooped THAT low!
The other one, Jamye… oh geez …. well, I was admitted to the hospital for the first time on August 8th, I have been in the hospital twice, she knows my husband’s schedule, the guys work together. She has not ever once texted me or called me to even say, hey how ya doin? Not once offered do I need anything, nothing.
Yesterday, the ordeal with getting my medication… when TJ (my husband’s step brother, Christine’s boyfriend) came to pick me up, he asked which pharmacy it was and when I told him which Walmart it was …. he informed me that Jamye had literally JUST left there. Christine wouldn’t take me even though I offered to pay her, I even told her I wouldn’t do any other shopping if she didn’t have time but my medicine is the only thing keeping me out of the hospital. I’m at home by myself most of the time because Jason (my husband) still has to work … we have done so much for all them but I can’t even get a simple phone call. I have EVEN SAID… Gee, if it gets bad enough, someone from Oklahoma or Illinois is going to have to take time off work to come here, we are going to have to pay for a plane ticket we really can’t afford right now, all because no one here will help us. Reaction: “oh that sucks.”
We are going to still have our cookout tomorrow. I have told my husband I am NOT happy about it and I stay in our room. I do hope that she comes over. But I don’t know how to pursue. She does NOT understand and she doesn’t have clue because she hasn’t been here. So, do I explain to her and try to make her understand what is going on … or do I tell her how I really feel … which won’t be pretty but I don’t feel good and I don’t care!
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September 4, 2011 at 12:54 pm
It is so difficult when one has an illness that no one has even heard of, & it doesn’t go away. Cancer people can understand, same with MS, Parkinson’s, etc. I got hit hard & fast back in 2002, last day of teaching April 2nd, by April 27 was strictly in a powerchir with no use of my hands. Hubbie had already used up his 3 months of FMLA by Aug when the Mayo released me after 4 months, so my mother had to move in with us & take care of me for 9 months; thanks God for her unselfishness! She was able to move back home when my youngest child graduated from college & took a job working afternoons. He helped me during the day & my husband got home at 3:00. BTW he is in a wheelchair due to being born with spina bifida, yet he was my caregiver!
We have a lot of family around, although my two siblings don’t live here & hubbie is an only child. But this is where we were born & do have lots of cousins, aunts & friends. They were very generous in the beginning, but as time went on & I didn’t get better, it was mostly put all on my husand to care for me & do all of the errands, bills, cleaning, cooking, etc. He was still working full-time. If I were you, I would either have a family meeting with those who are related or ask for help from a local church. Sometimes strangers can be the best at helping. I wish you the best, I know how frustrating it can all be!
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September 11, 2011 at 2:36 pm
GH,
Thank you, I hadn’t thought of this. I have everything switched from Walmart Pharmacy to a local pharmacy that provides delivery service with one free delivery a week, which so far is about how often I’ve been to the pharmacy in the last several weeks. Thank you. 🙂
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September 11, 2011 at 4:17 pm
Perhaps you could print out an informational sheet on CIDP ?? Alot of people simply don’t know and once they see on paper how scary and life changing it can be they are able to understand why help and family support is needed .
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