Husband diagnosed with GB in hospital but tests negative on spinal tap and EMG.

    • Anonymous
      May 9, 2011 at 8:42 pm

      Help! My husband and are I are at our wit’s end. Three weeks ago his feet and fingers were going numb with severe “needle like” pain. His legs had given out and the pain in his body was so severe….progressing up his body to his lower back and shoulder blades. He was admitted to the hospital and diagnosed with GB, even though his spinal tap came back fine. Seven neurologists monitored him over the course of a week as they gave him IVIG. One week later he finally saw the “only specialist” in Spokane who treats GB. She ran the EMG which showed no GB. She basically told him he was sleep deprived, depressed or B12 deficient. Today he saw his internist who said he is none of the three…and he doesn’t know what to say. My husband is still in severe pain…can’t sleep at night…and feels like he can’t go on with life. The doctor today gave him steroids and penicillin to see if that will “knock out” whatever he has going on in his system. We have read and been told one can have GB but test negative early on. Really need some insight…

    • May 9, 2011 at 9:05 pm

      The 1st part of this post sounds very similar to my case with exception of the pain. If possible you might want to consider going to another large hospital for a 2nd opinion. Soemtimes doctors may only see 1 or 2 cases in a career which makes a missed diagnosis a real possibility

    • Anonymous
      May 10, 2011 at 12:16 am

      I know it isn’t the nicest way to find out answers but I had a nerve from my ankle taken out.

      This proved that I had CIDP as the nerve showed demylenation and re mylenation.

      Something to think about and ask the docs?

      Is hubby on any meds for pain like Gabapentin?

      Good luck,

    • May 10, 2011 at 7:53 am

      [QUOTE=kevin2010]The 1st part of this post sounds very similar to my case with exception of the pain. If possible you might want to consider going to another large hospital for a 2nd opinion. Soemtimes doctors may only see 1 or 2 cases in a career which makes a missed diagnosis a real possibility[/QUOTE]

      I hope that your husband will be ok

    • Anonymous
      May 10, 2011 at 5:07 pm

      I read a little bit about this just now. Don’t need to exactly quote the National Institutes of Health to repeat what I read there.

      1. GBS is very rare- goes to the point about some (most) doctors have never seen it.

      2. In fast progressing cases the nerve and muscle conduction blocks may not be readily visible until a few weeks later.

      3. This is a quote “…In Guillain-Barré, reflexes such as knee jerks are usually lost. In Guillain-Barré patients, the cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual.”

      4. Another quote “…Several disorders have symptoms similar to those found in Guillain-Barré, so doctors examine and question patients carefully before making a diagnosis. Collectively, the signs and symptoms form a certain pattern that helps doctors differentiate Guillain-Barré from other disorders. For example, physicians will note whether the symptoms appear on both sides of the body (most common in Guillain-Barré)…

      5. CAUTION: also from NIH- “The use of [COLOR=”Red”]steroid hormones [/COLOR]has also been tried as a way to reduce the severity of Guillain-Barré, but controlled clinical trials have demonstrated that [COLOR=”Red”]this treatment not only is not effective but may even have a deleterious effect on the disease.[/COLOR] ”

      I’ve given you a lot to read. Well, read up, study, learn all you can.
      I would ask-

      Are there knee jerk reflexes or not?
      Is there any evidence the IVIG was successful? How much IVIG was given?
      Are the symptoms bi-lateral, meaning equal on both sides of the body?

      And finally, from a number of sources, “…To confirm the diagnosis, a lumbar puncture to find elevated fluid protein…” I have not found a source to confirm you may have GBS and not have elevated protein.

      If somebody here does, they may let you know.

    • Anonymous
      May 10, 2011 at 5:42 pm

      If it is at all possible, go to one of the recommended treatment centers.

      The GBS-CIDP Foundation lists 7 sites-

      The Neuropathy Association lists Centers in 15 states-


    • Anonymous
      May 10, 2011 at 8:10 pm

      From what I remember, I was comatose by the time my LP results where in, my LP came back fine, but I did have a very severe case of GBS. My first symptom was on a Thursday evening and I had the LP on Sunday afternoon. So, that was very early on, but it was very fast moving so I don’t think my protien levels had time to rise above normal.

      Tonya Correll
      GBS May 15, 2005

    • Anonymous
      May 12, 2011 at 12:49 am

      i had a lumbar puncture done within 24 hours of first symptoms – it took 7 days for results to come back during which time i was treated as if i had GBS anyway. LP confirmed GBS ( as mentioned previously higher protein levels) also confirmed Miller Fisher variant.

      If it is GBS there should be elevated protein and also reduced nerve conduction

      Can understand your frustration but i would be pushing for further investigation – no point treating for GBS if it could be something else

    • Anonymous
      May 13, 2011 at 3:17 pm

      Thanks for all the messages. It is very heart warming to have such support out there from people we don’t know. Husband has no reflexes in knees or feet. His pain/symptoms are bi-lateral. 5 days of IVIG seemed to stop the progression of the numbness/needle-like pain throughout his body, but the pain in his legs, arms and back is still pretty strong. They had him on 3600mg Gabapentin, but when his EMG tested negative the doctor told him to stop taking it. His pain level did not change once he stopped taking this and some days feels more severe. He is almost finished with his steriods and scared because the pain is still there. Interesting…his fingers were a light purple yesterday and are still numb and tingly. We will keep looking for a good doctor and answers!!!

    • Anonymous
      May 14, 2011 at 12:27 am

      The son of friends of ours was admitted to the hospital with a diagnosis of GBS. Could not be confirmed with the usual tests. It turned out that he had contracted botulism. Very similar symtoms in the early stages. He was given an anti toxin for it and after six months is recovering nicely. His Doctor said the idea that it could be botulism came to him in the middle of the night!

    • Anonymous
      May 18, 2011 at 6:25 pm

      I had a lumbar puncture within 72 hours of symptoms starting and my spinal tap did not show elevated protein.

      But thank goodness the doctors decided to treat for GBS anyway as my symptoms, including areflexia, were so strongly suspicious of GBS.

      At my follow-up one month after being released, my neurologist told me my spinal fluid had…I think she called it ogiclonal bands? …anyway it’s the test that says “this person might have MS.” But it turns out 25% of people who have GBS turn out to have those bands.

      I asked her if I could possibly have MS instead of GBS and she said “no way.” My symptoms were so clearly GBS instead of MS (rapid onset, etc.) that there was no doubt whatsoever in her mind

      The thing is, I didn’t have the elevated protein at all because it was still too soon in the illness and my body hadn’t produced the proteins yet, but there was the abnormal type of protein that showed I did have GBS for certain.

      they never did the nerve testing in me because I have a medical device implanted that precludes that test being done.

    • Anonymous
      May 27, 2011 at 8:45 pm

      Hi and welcome 3tinks and husband. I was diagnosed with GBS in July 2007, but was diagnosed first with hypothyroidism (low thyroid), because my TSH level was severely high. When I was treated for the thyroid condition, my symptoms of numbness, tingling, etc. did not improve and actually worsened. Symptoms of hypothyroidism can mimic GBS symptoms up to a point and my neurologist admitted that the hypothyroidism threw off a diagnosis of GBS in the beginning. Thyroid problems usually affects more women than men. …Have doctors done any tests for thyroid problems? If not, then your husband’s doctor may want to check his thyroid, but make sure they run a TSH, thyroid stimulating hormone test along with the T3 & T4. The pituitary gland produces a hormone to stimulate the thyroid when it’s not doing it’s job, i.e. the high TSH level. An under-active thyroid can lead to serious, sometimes deadly consequences. Sorry, not to scare you, but wanted you to be aware of it.

      Keep us posted on your husband’s progress. Anyone on this forum can attest that you will find a lot of help here.

    • Anonymous
      May 28, 2011 at 4:37 pm

      My GBS took over a month to put me down and all I had was numbness in both feet slowley coming up my legs.
      When I saw my Neurologist the 1st time she didn’t want to do the spinal tap as she wanted answers NOW. She had me have the nerve test for over and hour and said this way was fact NOW not guessing.I went straight to the hospital from her office and by the way she spent almost 4 hours testing me.
      I was blessed as had no pain and IVIGs started that night
      I remember my feet had been cold for over a week and my 1st IVIG my feet got warm again.I had 5 IVIGS and went home and started therpy from a wheel chair. My therpist never treated anyone with GBS but he had studyed it in school.
      I went 3 times a week for 3 months and went to a walker and cane and walking.He had no mercy with me and made me mad so I would fight harder to show him I COULD.
      My GBS was from a flu shot and even in the hospital I was forceing myself to move my legs.You are going to get alot better but you do it for yourself.
      Today I still have times of needing extra sleep. Also I suggest to stay away from any flu shot or neumonia shot. I was told by my doctor if it comes from an egg stay away. I have you in my prayers and you are recovering. Remember we know more than most doctors Your friend (Lakoda)[/SIZE][/COLOR]

    • May 30, 2011 at 12:39 pm

      We ended up going from Bellingham to UW medical center to see dr. Weiss. Difficult to get into, but seems to be the best in Washington.

      Good luck