Mid June 2015, I started experiencing slight tingling in my hands and feet. Also noticed a little weakness the while walking. I thought it was sciatica. I went to the doctor. They did an xray and spinal stenosis showed up. I went to physical therapy and my therapist recommended seeing a back surgeon. He recommended surgery. My family was insistent that I get a second opinion. All the while the tingling got worse and I got weaker. It was now mid July. I had scheduled surgery for August 4. I saw the second back guy and he said "I don't even want to know the name of that surgeon. Everyone your age has some stenosis. I think you need to see a neurologist, and ask him for a cervical MRI." He also said he thought it might be peripheral neuropathy and that I might need a nerve conduction test. I tried to schedule an appointment with a neurologist but was unable to get an appointment for several weeks. I have hypothyroidism and have a really good endocrinologist. I contacted her and explained my syptoms and what the second doc said. While I was on the phone, she called and got me an appointment with a neurologist the next day. Long story short, within a week I had two MRI's,a nerve conduction test and a spinal tap. The neurologist called me the next day(July 31) with a diagnosis of GBS and the following day I went to the hospital for 5 days of IVIG. That's my beginning.
Since getting the IVIG, I have deteriorated to the point where I'm contemplating a wheelchair. Has anyone else experienced this? About 8 days ago, I lost my taste sensation. Two days ago, I got up and my feet were totally numb. Today I got up and after reading some posts here, thought I would try and walk a little and wash my kitchen floor. I am exhausted! I work at a school and my health insurance comes through my job. I am not sure I can continue. I'm a secretary and the district clerk. I don't have to do a lot of moving around but the thought of getting to and into the building is incredibly overwhelming. My doctor said to resume my life but I just don't see how.
Thanks for listening!
We all got these symptoms and we know how you feel. Your health is now your priority. You need to follow up with the dr and get proper physiotherapy and occupational therapy to get you back to normal. Most of us here had at least two IVIG before we started seeing results.
Also note tha fatigue is something you will get with GBS and it will stay with you from a year to 3 years based on my doctor. Therefore dont label yourself as lazy. Ask for help and make your surrounding aware of this fatigue. You shouldn’t sit for longer than 3 hours without lying on your back. (Check the gallery on this website with fuller list of points about fatigue)
Try to get vitamin b. It was pers
It was prescribed by my doctor and it helps to recover the nerves. Try to take sick leaves and you should get a letter from your doctor to support that. I have been diagnosed with gbs since march ( 2 ivigs and 3 months cours of steroids) and i havent moved out of the hospital. I am staying here with over 4 sessions of therapies a day and follow ups with my doctor and I am walking again with a crutch. i am still on a sick leave from work.
I wish you all the best,
I had to take a medical leave for a couple of months when all of this hit me just over a year ago. I needed to take more time but I just didn't have it. I struggled for a while with Physical Therapy getting me through my work days. I had ups and downs but mostly downs at the beginning. It took me 6 months to really turn things around. Everyone kept telling me to resume my normal life but that felt so impossible given the destruction occurring within my body. I tried to be present and enjoy what I could but for a long time I felt consumed with this fight and had to step away from participation because I just couldn't do it. My normal life was so active that it felt miles away from what I could do. I think that you have to give yourself a break with this but still fight to recover. It's a balance between resting and pushing yourself. For me I have to be more on the upswing to do the pushing part. When the destruction levels off, it's so much easier to resume life again but for me I had to accept new limitations whether temporary or permanent. That was hard too but my acceptance I believe has allowed for more recovery.Don't let anyone bring you down just take it day by day.
That is exactly how I feel: consumed. I was assessing myself
today (which I probably do at least 7-8
times a day) and realized I’m sleeping better since
the IVIG so that is a plus. Hope I didn’t jinx myself.
As I read your post, I now remember that before I very ill I was also told I had sciatica which I was given a shot in my back for the pain but it only got worse. I had pain in my left leg and back. A few days later is when I couldn’t catch my breath and the emergency room I went. While there in two days I was told I had GBS. This was very hard for me and nobody I knew had heard of it. All of this was in 2013, I returned to work in 2014 about one year to the date. Yesterday I didn’t take my medication and I realized this is not pain I’m feeling it’s tingling in my feet. So now I’m stuck on what comes next. I’m a city bus operator and I now take vitamins that helps out with what I thought was pain. The tingling is very bad and my muscles feel like they need more strengthening so I’m going to see the doctor today.
I hope you got to your doctor and are able to stop whatever is happening pretty quickly. I'm really hating the way I feel today! Best to you.