Sudden onset of polyneuropathy
 

I would like to start my story with the fact that typing is extremely difficult and painful, so I will try to be brief. I felt my first noticeable symptom as tingling in finger tips on Feb. 4th 2014. I had to leave work because my dad was going into the hospital unexpectantly. I clocked out by typing in my information. I immediately looked at my boss and said, "it felt like typing on nails". By Feb. 19th, I could not walk! Within that time period I saw my PCP and went to ER twice each. On Feb.21st, I had a dear friend call 911 and I was transported to the ER and finally admitted to the hospital. I was in the hospital for 12 days. The docters FINALLY ran test after I pitched a fit. They ran 3 MRIs and a spinal tap. They said nothing showed up and I had a B1 vitamin defiecency and I would probably never walk again. They gave me the same pain meds I had been taking for years for RA and added neurotin and thiamine. I was in hell. I literally thought I was going to die. The pain that started in my hands had also started in my feet and up my arms and legs. I went to er over and over because the pain and tingling and numbness progressed up my neck, throat and ultimately up to my eye sockets. After 12 days of misery with very little relief, I was released from hospital and admitted into a 2 week rehabilitation center. They finally diagnosed me with "multifactorial periphrial polyneuropathy. They began extensive therapy. I went from bedridden to transferring to a wheelchair with a transfer board. Cut to 2 weeks later, I still can not walk, use my hands effectively and I still was wearing depends and using a bed pan. They began searching for a nursing home for me. Here is where I should mention I am 45 years old and I have no insurance whatsoever AND I live alone with no one to care for me. Thankfully the facility was understanding. I was there from March 4th to May 8th. I went through 3 hours daily of intense therapy and was started on a drug regimen that maintained a pain level averaging a 7 out of 10. I was able to walk 150 ft with a walker and able to stand for up to 8 minutes. I could also stand and transfer to a bedside toilet. All of these factors led me to being released and sent home with a home healthcare team. Because I didn't have insurance, and was still not approved for medicaid, no nursing home would take me. Believe me, I worked hard to get where I am today. BUT,,,, my pain is NOT managed. I just got medicaid, so my NEW pcp is sending me for new test and is slowly beginning to try increasing and adding meds. I currently take 11 prescriptions and 3 types of vitamins. This equals 30 pills a day! I will stop now and thank anyone who is still reading. Does anyone even slightly relate to my story?

This sounds very much--
 

--like a bout of Guillain Barre syndrome or one of its variants; an acute-onset, autoimmune neuropathy.

See:

http://neuromuscular.wustl.edu/antibody/gbs.htm

Also some food toxins are fast spreading.
Poorly cooked chicken has Campylobacter
In it which causes neuropathy.
Also some fish and red algae have toxins
That affect the nerves.

Welcome mystifid2. :Wave-Hello:

Thank you,

The hospitalist made a flippant remark about "gbs" when I was desperately begging for an answer or some type of test to at least rule out some possible causes. I had NO clue what he was referring to, so he said if I didn't know what it was, then I didn't have a family history of it. I guess I need to look into it further. I have learned my history of Gastric Bypass and the 13 years of malobsorbency may have contributed quite a bit. Also the fact that I have visited the same physicians assistant every 3 months for the last 10 years with major financial restraints. She has medicated my issues without the luxury of testing above a yearly blood panel.
Helen

Hi & welcome. I'm not sure way they said if you didn't have a family history of GBS the it probably wasn't that. As far as I know that is not genetic. I actually know someone who had it without any family history.

You have been through so much very quickly at such a young age. My PN started at 48. It came on very quickly and spread throughout my body. However, I have never not been able to walk.

I'm not sure if a B1 defiency could cause of this. Mrs. D or one of the others may be able to answer that for you.

I hope now that you have Medicaid you can get the tests you need and possibly some answers.

Thank you, I really have been through SO much ! The first week of symptoms, I was sharing 12 hour shifts at the hospital guarding my dad. He had become septic after a toe amputation. We had to make the decision to amputate his leg below the knee. I say "guard" because he was pulling at his iv and fighting to get up. They threatened to restrain him if a family member couldn't stay 24/7. I took shifts with my only capable sister ( the other sister is fighting breast cancer). I remember fighting to walk to his room and having to rest 2 times before reaching his room. After a week the docters gave us 2 options.
Let him die OR amputate above the knee. I stayed home for a few days because of pain and fatigue. I went to dr. and she told me I needed B 12. Well, I got b 12 and I got worse with a quickness. I finally reached out to a close friend for help. She came over immediately. I honestly thought I was dying. You may need to know that 6 years ago I had a very close friend who died in her sleep. She was in my bed so I woke up and found her dead. Since that day I have had a mind numbing fear of dying in my sleep. We practically lived the same life for 8 years. Same job, bad delegation, RA, gastric bypass and more. We lived parallel lives so I was convinced my son (who is mentally disabled) would find ME dead in my bed. Anyway, back to my rapid decline. My friend came over and took one look at me and refused to leave. In that week we went to pcp again, same answer, b 12. I wont recap the story again. I just wanted to add that while I was in the hospital, my dad was 2 floors above me dying. The family didn't want him to know I was in such bad shape. While I was in the rehab facility, my dad died.
He was my world! I only got to see him once before he died. I didn't know it was the last time. He died March 14th. He had gone home to die. He refused any more treatment. He died 1 week after going home. I had gotten clearance from docs for when hospice called the family in. They didn't get the chance. My baby sister was with him when he took his last breath. I was confined to a wheelchair, racked with pain and stuck in a facility less than 5 miles away from him. The next time I saw him was in a casket. I couldnt even get out of the car to go to the graveside. Once again, I have to stop. Too much pain in my hand and in my heart. Thanks for listening.

Helen

Helen,
my heart goes out to you. I dont even know what to add except that the rapid nature of your illness reminds me of GBS. I worked with a young guy who got GBS and he described it just as you did. Although as Glen said there are variants. I have a friend who had more than half his stomach removed to loose weight. He was quite overweight before hand. He started rapidly loosing weight and within months did not even look like himself. Anyways, the doctors told him that down the track he may have complications with getting the nutrition he needs. When he told me this it raised red flags in my head that this could be dangerous in the longterm.
I hope you are doing better and finding the answers you need.
Aussie

Have some benchmarks
 

You are probably going to find a new you. I hate to use "cliches" but the way progress is made at such a snails pace that may take LOTS of time. I have markers that can tell me how I am doing. ie, How scary the shower is. How hard it is to drag a foot into the tub. I have progressed to where I can climb a street curb instead of going to the wheelchair ramp. Not a giant leap, but something to hang on to. I know you are suffering loss and I hope that I have not discouraged you. I will graduate from a walker to a cane someday if Father Time doesn't get in the way. Good Luck, Ken in Texas.
PS, Elapsed time of progress approx 1 yr.

Re:sudden onset of polyneuropathy
 

Thanks everyone. I go to the regular doctor today and the neurologist on the 18th. I had a very bad spell for a few days last weekend. I had a lot of cold spells. I got up one morning and was completely incontinent. I had to wear adult diapers for 4 days. I could barely stand much less walk. I had a fall, which was very controlled therefore I only landed on my right hip and right hand. I can not even explain the pain in my hip down my leg and concentrated in my knee. I also had a very sore throat. I was so weak and I realized once I was better that I had times of delirium. I was seeing movement out of the sides of my vision and I was hearing things. My drug store delivered meds on Friday and I had them bring me cough syrup. I am trying to figure out a way to tell my dr. that will not make him assume uping my pain meds is the problem. Anyway... thanks for being here guys, it is a lot of help.