Neck tingling/Dizziness

    • Anonymous
      September 6, 2013 at 2:37 pm


      I’m new to the forum. I was recently diagnosed with small fiber variant of GBS after running from Dr. to Dr. for the last 7 monhts. Good news is I never got hospitalized or paralyzed, which then in return made it harder to diagnose me I guess. My main symptoms were dizziness, weakness in legs, tingling and burning throughout the body, blood pressure, heart beat and temperature misregulation. I’m a lot better on most of these issues. Some days are worse than others, but I can definitely see that I’m overall getting better.

      Now the one thing that keeps hanging around that I don’t know for sure if it’s related to GBS or something else (and the Dr.’s seem to be struggling with it as well) is that I have neck tingling and tightness (almost like someone is pulling your head forward all the time) on a regular basis. On some days it’s so bad it gives me dizziness (Which was one of my first symptoms as well during my very acute phase in Februrary). What tends to help is walking around, which btw has always improved all of my symptoms over the last few months. Whenever any of them come on, walking or moving around for whatever reason makes all of the symptoms better.

      So I guess the question is if the neck tingling is related to the GBS or something separate and did any of you have any neck issues with your GBS?

      Reading a lot of the stories I feel very fortunate that I lucked out with what appears to be a really mild case of GBS and I’m almost embarresed to ask this question.


    • September 6, 2013 at 10:20 pm


      It almost sounds like you have some Fibromyalgia symptoms in addition to a mild GBS. This combination is not unheard of and diagnosis can be more difficult when both are present.

      Have you had any testing (nerve conduction study, elevated CSF protein test, etc) for GBS to help confirm it? How are your reflexes? According to recent research, less than 5% of GBS patients retained all reflexes during the illness. The presence of intact reflexes should suggest an alternative diagnosis other than GBS.

      I had Miller-Fisher that seems to affect the face and surrounding areas. I had blurred vision, difficulty speaking, swallowing problems, neck weakness, tingling and numbness on my face. I also had some lightheadedness, but that may have had to do with other aspects of my particular GBS/CIDP. Treatment of MFS is similar to treatment of GBS/CIDP: Plasmapheresis, IVIG, and Prednisone seem to be most prescribed.

      My wife has had a severe case of Fibromyalgia for many years and she has gone from specialist to specialist. Fibromyalgia symptoms usually include fatigue and a burning sensation in the muscles, often in the neck and shoulders. Sometimes shooting or throbbing pain is present. Physical therapy is more likely to provide benefit for Fibromyalgia, fairly quickly when compared to GBS. Prescriptions of Gabapentin and Savella are often prescribed to treat Fibromyalgia.

      Whether you have anything other than a mild case of GBS is up to your doctor’s to determine. If it is a mild GBS, you might find Alpha Lipoic Acid helpful. Although there is no definitive medical research on its usefulness yet, some have reported beneficial results from taking it. Search the forums here for more info about it.

      Hope you get better quickly.

    • Anonymous
      September 6, 2013 at 10:27 pm

      I’ve had nerve conduction test done and while not extremely bad it definitely showed demyelination in my arms and legs. Since I bounced around from Doctor to Doctor I can’t say for sure if I ever lost reflexes, though whenever someone did check my reflexes I recall that they worked. I’ve tried PT, Chiro and some other stuff and that doesn’t seem to put a stop to it, though I did have a phase in May through June where it completely disappeared.

      I also had a Spinal Tap 3 weeks ago which showed elevated protein and no other indications of anything else. Also MRI/MRA brain and MRA neck should nothing.