cidp caused by food poisoning? my story – i’m a new cidp victim
AnonymousJuly 7, 2011 at 1:46 pm
Just wanted to share my story in hopes of some advice.. Here is my timeline and all that was going on around the time/just before my CIDP symptoms appeared and my diagnosis. I’m still not sure what the right questions to ask are or anything since this is completely new to me. If the story is too long/boring, the questions are at the end 🙂
I started my new job in october 2010. After a week I was getting lower back pain all the time and I started noticing I had erectile dysfunction since having a new girlfriend after a year of near celibacy. (I could get an erection initially, but it isn’t as hard as normal and doesn’t last long) I attributed the back pain to working with computers sitting in a chair all day for 5 years to working a new job where i stand all day. (I mentioned ED to see if anyone else with CIDP has had any problem with it, or is it a completely separate issue?)
Then about early january the back pain started going away and I noticed my toes feeling numb and didn’t think much of it.
February I had to leave work for a few days because whenever I was on my feet and moving, my vision became too blurry to see much. I went to the med center and I was just given antibiotics for sinus infection. (no med insurance yet) I seemed to be fine after that for a while.
Near the end of february, I noticed the numb feeling spread throughout my feet, and I also found out my gf and I were gonna have a baby. (its a boy!) I got hired in at the end of february and finally got health insurance. Boy was I lucky! Within 3 months I reached my $1200 deductable and am near my $2500 deductable so I’m covered 100% now 🙂
Over the course of march and april, the numbness eventually spread up to my knees and worsened in my feet. I also began walking with a limp and walking slower. Starting near the end of april, I began having pain in my calves (a tight muscle feeling) while walking.
In may, my walking became apparently sloppy because I was having a much harder time with balance. I got a physical, all my bloodwork was fine (no diabetes or anything, just a slightly high platelet count). I got referred to a neurologist for an EMG, and he immediately diagnosed me with CIDP. I got sent to the hospital for a spinal tap and MRI to confirm and it came back confirmed. My protein in my CSF was almost 100% (i think?) and MRI showed no abnormalities in my body.
I worked for about a week or two after my diagnosis and my ability to walk was getting worse faster. I had to go on disability leave late may because of the pain.
I started IViG the last week of may/first week of june. The first of the 5 day treatment, the nurses forgot to premedicate me and I ended up getting rigors for about an hour (very scary experience!). The rest of the days, I felt like I was getting better almost immediately after the treatments. Walking seemed easier and less painful!
So, from the beginning of june till now (july 7th), I went from walking without help, to using a cane a week later, to using a walker 2 weeks later, and needing a wheelchair if i need to be on my feet for longer than 30 minutes or so. Things got worse pretty quickly. It started in on my fingers and hands now just before I started IViG treatment.
Story done – on with questions
Anyway, I just got in with my neurologist because of the rapid progression of muscle weakness. He said Im the worst case of CIDP he’s seen. He said it was caused by food poisoning. He wants to start me on Solu-Medrol IV in addition to IViG, alternating every 2 weeks between treatments. I see a lot of people get weekly IViG and solu-medrol treatments. Are monthly treatments enough, or do I have to wait and see before I ask to up the dosage?
Has anyone had similar experience, and how long did it take to get back to feeling somewhat normal again? What treatment worked best for you? Any guys get erectile dysfunction cause of CIDP and did treatment fix it as well as feet/hands/etc?
AnonymousJuly 8, 2011 at 12:45 am
From my research, Campylobacter jejuni is the bacteria that can cause GBS/CIDP. I will ask specifically how my neurologist came to that conclusion my next visit, but he sounded positive “based on the severity” of my particular case.
Apparently this bacteria resembles myelin and once the bacteria is gone, it thinks myelin is the bacteria and keeps attacking. I thought it was from my sinus infection because it started right after i was treated for it. Awell, the cause makes no difference now that I have CIDP. Just hoping for quick remission.
I also found somewhere that nicotine actually may help in myelin repair/regeneration. Maybe I’m hopeful that I have a good reason to start smoking again, lol 😉
“It is possible that by increasing oligodendrocyte cholinergic stimulation, AChEIs and other cholinergic treatments like nicotine could promote myelination during development and myelin repair in older age.”
July 9, 2011 at 11:34 am
You sound similar to the timeline for my husband. He had a tooth extracted January 5th of this year after cracking it in a ski fall. Next day he was sick as a dog. Immediately after that he had back pain, night sweats and muscles started feeling tight. Walking became more and more difficult.
Feb 18th he was diagnosed with GBS. Started 5 IVIG treatments. No response. Kept going down hill.
March 3rd he fell at home. He was admitted to the hospital and started 5 plasma exchanges. He was released to a nursing home. He could still walk a few feet. Kept going downhill.
I started trying to find a specialist in Seattle. We live in a smaller community and needed a specialist.
Got into see Dr. Weiss on March 30th. My husband could no longer walk. He was then diagnosed with CIDP. Dr. Weiss at UW Medical center changed the diagnosis to CIDP and prescribed 8 weekly IVIG treatments with a much higher dose. By this time, Marshall’s legs were completely not functional and his arms were very close to not being functional. There were days when he couldn’t move his right arm at all. He spent 3 1/2 months in the nursing home.
After the 5th week of treatment, we finally started seeing the first signs of improvement. That was around mid May. Improvement has been steady.
We saw the neuromuscular specialist again on June 9th. Marshall still could not lift his feet off the wheelchair. Now 3 weeks later he is close to standing and has been accepted into UW in patient rehab.
[B]It was critical that we saw a specialist who had seen this and was just not reading about it in medical journals.[/B]
Find a specialist and get more aggressive treatment is my recommendation to anyone in this boat.
We now have a standing frame in our living so he can get weight on his legs and feet.
I hope this timeline helps.
AnonymousJuly 9, 2011 at 2:19 pm
I just had my first monthly treatment of IViG yesterday. The first time I had IViG it was 5 days in a row and the first day, after an hour and 20 minutes, I developed rigors and was loaded up with demorol, then the shaking stopped after about an hour. Horrible experience! Once i stabalized, they continued at a lower rate and I was fine. (they did not premedicate me the first day!)
The rest of the daily treatments went without a hitch at the highest rate and all that happened is I felt nauseous the morning after every time. The last day of treatment they tried fluids along with IViG and I didn’t get nauseous the next day.
A month later (yesterday), I had my once a month dose of IViG, I was premedicated this time, and 1hr 20mins later, I had rigors again! This time my blood pressure was 140/90, heartrate was about 120, and temp went up to 101 on top of rigors. I stabalized about an hour later, but my temp and heartrate were still a bit high. I finished half the IV at a slower rate and was fine and have to finish tomorrow.
A few hours after I got home, my temp went from normal, up to 102.5 within maybe an hour or so. No other signs of sickness, no rigors, no nausea, just chills on occasion. It stayed there for about 2hrs, then suddenly went down to 99.7 within about an hour and is now back to normal.
Since I didn’t react to IV since the first day, should I still be reacting to it? Should I be taking IViG more often perhaps? This time I was on lyrica (450mg/day) and norco. I will be telling my neurologist about my reactions, just thought I’d ask here too if anyone had similar problems. I’m supposed to start solu-medrol steroid IV next week and am a bit scared of reactions cause of IViG.
AnonymousJuly 13, 2011 at 9:33 pm
I’ve been following this thread with interest. Here’s my story. I attended a 3 day seminar in Washington DC about 4 years ago. I live in Pennsylvania, so the drive took me about 3 hours. The entire drive I experienced mouth ulcers and tooth pain ( I had just lost a filling and assumed the pain was from the edge of my tooth rubbing against my tongue). I also had to stop frequently to stretch my legs (I had tingling on my right leg- which I dismissed as a long drive in a new car). I got through the seminar, with the use of an oral medication. Two years later, I got an extreme cramp in my right calf muscle, I also noticed I couldn’t stand on my toes on that foot. I saw my primary who sent me to a specialist. The specialist sent me to a back surgeon who sent me to another specialist. This last Doctor diagnosed me with CIDP. I did the 5 day IVIG loading procedure and followed up with 6 months of treatments (2 days every 3 weeks). We stopped treatment after 6 months because I wasn’t responding. At this point I’m still off treatments, things haven’t gotten much worse, but haven’t improved either. I have total foot flop on my right foot, both legs and ankles are weak. I tire easily. I’m interested in finding out the cause of my disease. The food poisoning mentioned earlier was interesting to me. Does anyone think this could have all started with a simple oral infection?
AnonymousJuly 14, 2011 at 1:33 pm
It isn’t possible to identify the specific cause, and it wouldn’t affect the treatment
You’re right about that–my doc seems to be in head scratching mode right now, he can’t understand why I haven’t responded to IVIG treatments, he seems hesitant about trying any other treatments at this time–so I’m in limbo. I guess I’m fixating on the cause because the solution seems to be a mystery.
AnonymousJuly 14, 2011 at 3:28 pm
ED was an issue for me as well for a couple of months when I was at my worst (and before my CIDP diagnosis) but full functions returned rather quickly once I received the right treatment.
Plasmapheresis worked very well for me, much better than IVIG. I had 13 (7 inpatient before rehab and 6 outpatient) total treatments over a six-month span and returned to full strength around September of 2010.
The only thing I do now is take Cellcept (500MG in AM and 1000MG in PM).
At this point, I have had no setbacks and no lingering effects whatsoever. It’s been all uphill ever since my official CIDP diagnosis.
I do spend a lot of time at the gym these days because I’ll be damned if I’m going to willingly go through another ordeal like that again – 6 weeks in a nursing home and 5 1/2 months in the hospital.
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