I'm a new member and wanted to find out if anybody had similar experiences and if I could get some input. It has been scary for me for one that I was never diagnosed with GBS, and my MD and neurologist even questioned my symptoms, and second I did not know what course this would take. My symptoms started end of December 2014 with getting up at night and experiencing a foot drop on one leg and almost fainting. I crawled back to bed and attributed it to dehydration and also long standing sciatica. I even went back to work for the next few days. Then few days later in the evening, I lower back felt almost loose and my whole body felt weak and the feeling of paralysis and numbness in my pelvic area. I had someone drive me to the ER where they took MRI of my whole spine but found some disc problems, but nothing critical. I went the same day to my primary MD who thought I had possible MS and send me to another hospitals ER. I spend the night there and they took all the tests, including brain CT scan and MRI, with the hospitals' neurologist finding nothing. I mentioned to him of possible GBS, but probably because I was able to walk and my reflexes were normal, he did not think it was it. However, at that time, my heart rate was fairly high when I would get up from the bed (120-130), scaring the nurse who would rush into my room. After I was discharged, my primary MD and neurologist took more test to rule out Myasthenia Gravis but when mentioned lumber tap, he said its too risky. He said on my last visit I should see a psychiatrist. I'm still having a never conduction test scheduled by my neurologist in 2 weeks but I almost had to "bag" for it. It's been now about 1 month now since my first acute symptoms happened. During that time, I've had episodes that could last from 30min to hours where my hands get sweaty, my arms and legs feel like "rubbery" or "floppy", worse at night or after walking more than 5min or exerting myself. I've had pains in my hips and quads and general weakness in legs/arms. I also felt like drunk at times and off balance. Recently, my numbness and tingling have passed but I feel pain in my quads when walking for short periods. I also feel chest tightness and queasy feeling in my stomach. Since I was not treated by my primary MD, I started seeing an acupuncturist( so far only a few visits), who changed some of my diet. In general, I feel some improvement but my leg weakness/quad pain still persist. I'm not working now and my MD told me he will not extend my disability after another month. I also made another appointment with another neurologist to get a second opinion. Briefly, I don't know If I have GBS, possibly a milder form, since I can ambulate or something else, but the experience has been scary and to worry how long the recovery is and when I can go back to work makes it worse. If anybody has some input, I would definitely appreciate it.
Ask for A spinal tap.Only way to confirm if it is GBS.
I am in my 9th. month of GBS.
All the best of luck and lots of courage.
Agree with rick21, I think a spinal tap would help in the diagnosis. Unfortunately, GBS is rare enough that some GP’s and even some neuros aren’t familiar with it. My diagnosis took over a week, after multiple visits to GP’s and a neurosurgeon. My GP finally diagnosed it, and the spinal tap confirmed.
I guess that’s why they call it “practicing” medicine! Trial and error, process of elimination.
Stay strong, and seek answers.
Very interesting story. I did not experience a lot of what you did. Blessings to you - and may you feel getting back to normal in the near future. Nebretta.
I agree with Rick21...ONLY way to confirm if it is indeed GBS...I had GBS in 1985 and that it how they confirmed it and now this year I started getting weak in my legs and arms and finally found a neurologist who knew something...he said we need to get a spinal tap to confirm what I think it is...from that spinal tap it confirmed I had CIDP which is sort a residual effect from having had GBS...the NORMAL range for the protein level in your spinal fluid is between 15-45 and mine was 236...told him right away what it was!! Good Luck! cowboybroker
rick21 said:
You're right. It's probably the only way at this point of time. I had a nerve conduction done last week and was told my nerves were okay. Now, I wonder since me situation seemed to be milder form, since I was able to walk, if that's why the test came out negative. I'm going to see another neurologist this week and see what his opinion is.
Ask for A spinal tap.Only way to confirm if it is GBS.
I am in my 9th. month of GBS.
All the best of luck and lots of courage.
thanks for your input. Do you think a spinal tap is risky and worth it. I'm getting slightly better at this time, although I cannot walk more than 5min without pain in my muscles. My primary MD said in the beginning its risky.
cowboybroker said:
I agree with Rick21...ONLY way to confirm if it is indeed GBS...I had GBS in 1985 and that it how they confirmed it and now this year I started getting weak in my legs and arms and finally found a neurologist who knew something...he said we need to get a spinal tap to confirm what I think it is...from that spinal tap it confirmed I had CIDP which is sort a residual effect from having had GBS...the NORMAL range for the protein level in your spinal fluid is between 15-45 and mine was 236...told him right away what it was!! Good Luck! cowboybroker
Thank you for reading my story. It's been 1month 1/2 and I feel I'm getting slightly better. I guess compared to many other people's stories I should be grateful I was not hospitalized, although initially it was scary when the MD was making "guesses" to all kinds of diagnoses like MS or Myastania Gravis. How did you deal with the emotional side?
Nebretta said:
Very interesting story. I did not experience a lot of what you did. Blessings to you - and may you feel getting back to normal in the near future. Nebretta.
Why is the MD saying that it is risky? Did the spinal MRI determine that you have an spinal issue at the location where they need to puncture? If you do not, I believe that the spinal tap is very necessary to help you diagnose what is happening. I would definitely do it. They will be able to use your spinal fluid to test for bacterial infections, viral infections and certain autoimmune diseases. The protein level is also a very important clue to what can be going on. Good luck!
I have spinal stenosis,plus three herniated discs,L3 4 5,and it was done with no complications.