Can Anyone Pls Offer Advice?
AnonymousMay 29, 2006 at 8:37 pm
Hi All: Hope that you can shed some light on my darkness…..
Almost 2 wks ago I rec’d a Dtap vaccine, and the same night started to experience my symptoms. (I was in excellent health b4 this). I have been experiencing sharp stabbing pains, pins & needles in arms and legs, fatigue, numbness on one side of my face, sleep disturbances, pinching nerves and strange aches and pains mostly in my legs. A couple of days I had much difficulty walking because of my leg. This is now the second week of these strange problems and since I have seen a regular doctor, one visit to urgent care and twice in emergency (hospital). Only the urgent care doc suggested it MIGHT be GBS. All others dismissed the possibility because they think the case is not extreme enough (no paralysis), although it sounds to me like all the symptoms are right on. Am I wrong to believe this is directly related to the vaccine? It seems too much of a coincidence. CT scan, blood, urine, and vitals all came back with good results. Neuro app’t on Wed. My second question is would treatment still be worthwhile even if my case was mild?
AnonymousMay 29, 2006 at 9:04 pm
hi girlster & welcome,
it does seem the vaccine is the prob. gbs usually is somewhat symetrical meaning it affects both sides of your body. call neuro in advance to make sure he runs an emg/ncv. a passing grade on the emg but a failing grade on the ncv strongly suggests gbs. even a mild case, which you may not have at all if it is gbs, can benefit from ivig treatment. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 1, 2006 at 9:28 am
Welcome to the site. I agree with what Gene said and would say that it took from first symptoms I or the doctor did not suspect GBS until about the third or fourth week into this investigation. The neurologist performed the tests Gene talked about then these results led to a spinal tap which was used to confirm GBS. Several session of IVIG were given which helped the recovery process significantly.
June 5, 2006 at 9:31 pm
Hi: I also have to agree with the others, it took 3 weeks for them to diagnose me, after the initial start of symptoms. It was not until I became paralyzed and they did a spinal tap that they came to the conclusion I had GBS. I had a flu shot for the first time. Emg is helpful and tap. Hope all is neg. and things improve for you. Joan
AnonymousJune 5, 2006 at 9:46 pm
GBS is usually symetrical and starts at the extremities and works it’s way inward. Miller Fischer’s variant of GBS usually attacks the face and head more than other parts of the body. Miller Fischer’s variant is usually not as symetrical because nerves in the head and face aren’t symetrical.
If you have GBS, then you should get treatment, no matter how mild a case you have. This is the recommendation of the GBS Foundation International. Often times the difference between a minor case and serious one is time before treatment. If you have GBS, your immune system is attacking your nerves. How much nerve damage do you think is acceptable? Unfortunately, the treatments for GBS are really expensive. My IVIG bill in 2002 was 48,000 dollars. Some doctors make a calculation as to how much nerve damage is worth tens of thousands of dollars. I wonder if the calculation is different if the nerve damage is happening to the doctor or one of the doctors family members.
AnonymousJune 7, 2006 at 6:50 pm
Hello girlster, I got GBS from a flu shot in Nov 2005 and let me tell you that you need treatment. If you have GBS (which I was told could only be confirmed with a lumbar puncture to research if you have an elevated protein level) then it must be treated with IVIG. To read that some doctors will only prescribe a limited amount also sounds rediculous. It does cost alot ( mine cost $38,000 for 139ml ) but Blus Cross and Blue Shield picked up all the cost. I was limited on my amount because they could not find enough in the surrounding area for me and the doctor felt 11ml short would still work. I recovered well and have been back to work full time now for 2 weeks,my success has to do with an early diagnosis.But you need to be diagnosed real quick to start treatment so you do not get worse and recover takes along time. Best of luck and a speedy recovery and remember vitamin B does wonders for the nerve pain
AnonymousJune 8, 2006 at 4:08 am
Thanks everybody…I feel like I’m losing my mind. At today’s follow up with the Neurologist, I was given an all clear on the brain MRI and bloodwork. I had to really insist about getting the EMG test to him and he tried to brush it off again! He was obviously offended that I was pushing for the test. He tried to suggest that I had arthritis. Anyway he finally gave in to my request but I heard him telling his assistant to book “legs only”. After much thought, I realized that I really don’t want/trust this man to do the test, so I called another neuro for a 2nd opinion. The only problem is now I have to wait another 2 weeks! I just don’t know how I could speed things up, unless I make a (third) trip to hospital ER?
AnonymousJune 8, 2006 at 3:16 pm
Good for you on going for a second opinion. If you don’t trust your current doctor to take you seriously then you are probably right – they won’t. Sorry you have to wait an additional 2 weeks but if you find the right doctor it will be worth it. Also, if you start to feel even worse please go to the ER immediately.
Don’t be afraid to push for treatment…because this disease if diffcult to diagnose in its mild form it is easy for the doctors to push you out the door and treat you like it is all in your mind. That is what my doctors did until my husband finally demanded they admit me to the hospital. I can’t tell you how many people told me I didn’t have GBS because it was “too rare for it to even be a possiblity” (even after I asked them to check). Grrr…
I had a Hep A & B vaccine on 19 Oct and on 24 Oct I started with the same symptoms you had but they developed very slowly — for me the worst part was the excruicating pain. Finally, by Dec I couldn’t stand up by myself and then I was finally diagnosed with GBS.
Good Luck and let us know how things go.
AnonymousJune 8, 2006 at 8:56 pm
🙂 Hey 2peas, Gene, Olav, Jan and everyone else..
I really have to thank you all because without your insight I would not have pushed to get this 2nd opinion. This is such an awesome site, and it has helped me tremendously. 🙂
It has been three weeks of agony/pain and insomnia but I feel such a sense of relief now. I am booked into the Palo Alto Neurology Clinic and feel confident that it will be worth the wait.
God bless you all and thank you!
-Just a girl who wants to get back on her feet.
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