I suspect it’s from the vaccine…

hi daniel & welcome,

yes, it is prolly the vaccine. literally by the book reflexes must be absent for gbs. your doc is reading the book. but you can get gbs & still have reflexes. you need a neuro to do an emg/ncv. take care. be well.

gene gbs 8-99
in numbers there is strength

I think you need to see a Neurologist ASAP. I don’t know what you have, but the sooner a MD figures it out the better.

Be mindful of the better one day, worse the next. That is how my ten y/o presented and we were dismissed. Additionally, the longer you wait to get a dx and start treatment, the more damage that occurs. Sometimes the damage can be permanent. How long after your flu shot till present has it been? There are time frames that meet the criteria for gbs as opposed to cidp or sidp. Reflexes do not always go away right away, as was the case with my son. If enough time has transpired, a sure fire way for a dx would be a spinal tap to check for elevated protein. As well a ncv/emg would be good to start as a baseline for future comparison if necessary. If you do get a ncv/emg, make sure you go to a place that you could get the same dr. time and time again if the test needs to be repeated. When you get the first one, ask for a copy of the results. The only way a true comparison can be made is if you test exactly the same nerves each time.

The most important thing is to get the dx and START TREATMENT!!!!either ivig as a firs line, plasma pheresis if there are no results with ivig. Since you seem to be progressing slowly as my son, I suspect it would be a mild case of gbs or possibly cidp. In any event, you must get a dx asap!!!!

Good Luck!!
Dawn Kevies mom

daniel,

too early to Dx you as cidp. successive ncv tests showing decline is a sign of possible cidp. there is something called recurring gbs. cidp can last for life. make sure you rest, rest, & rest some more lying down. gbs residuals feel like active gbs. take care. be well.

gene gbs 8-99
in numbers there is strength

Well,

It is a very difficult dx to make when the cidp is slow. Kevin’s first dx was gbs. He had ivig for 5 days went home in almost perfect condition 10/06. In Feb. 07 weakness was slowly returning. Doc said to rest, can’t over do with gbs. March extremely weaker. Ncv/emg was the same as in Sept diagnostically, but clinicaly he was weaker. Ivig was scheduled , by now mid March. Two days before ivig, much better, wanted to cancel, doc said no, lets resume treatment. We proceeded w/ treatment every six weeks till June. Another QUICK!!!! full recovery, re dx to gbs again. We thought we were out of the woods. Five months later weakness is back. From mid Oct to Halloween, marked weakness. We had difficulty w/ venous access so a port was put in. This was Nov 7. Now the doc is doing loading doses once a month and wanted to introduce cell cept.

This part of my answer is regarding your question cidp forever? In the last week I have done much investigation concearning treatment plans. Our Doc is currently out of the country and returns after the first of the year. At that time I plan to tell him Cell cept is out of the question, as well, so are the monthly loading doses. I am going to ask for a two week maintenance schedule, later to be moved to a three week schedule. Much of the readings I came across indicate that high loading doses are not always necessary. Each case is different. Kevin presents slowly, so he does not need this WHAMME so to speak. The studies indicated that the drug just needs to be in the body, not necessarily the high amounts usually prescribed. Some studies indicat 1g/kg as maint. dose. Some are even as low as a 1/2g/kg. I am going to ask for the 1g to start to make sure we keep everything repairing for a while. When I say a while, I suspect 1 year of every 2 weeks, then maybe another 6 months of 3 weeks and then see. Some of the studies suggest 4 months is all you need to go into remission I do not believe that, since we relapsed after 4 consecutive loading dose treatments, as well I do not trust the idea of a 1/2 g/kg.

It is possible to beat this? Some members on the site have. Some have had more drugs than just ivig, such as cell cept, imuron, prednisone etc. I am not going to do that because Kevin is only a 10 y/o boy. Some NEED to do this. Obviously if we ever needed to I would.

I did read yet another study that was very encouraging. There were 15 patients, it did not give the specifics of their disability at the start to the finish, but it did give a range of 2-13 years of treatment with full remission. So there is hope and there is a medicine to help Don’t give up.

When Kevin gets mad, I remind him of his little friend that has multiple surgeries ahead for his illness and still will never be “normal” I tell him how lucky the 2nd dx we had was wrong. That had no medicine or cure, just the future of a wheel chair sooner rather than later.

I still get really pissed off about this condition, but I am learning to equate it to just some autoimmune dis that does not kill you. It could be diabetes, with dependance on insulin requiring multiple daily sticks to check blood and deliver insulin. It could be Cancer, It could be some disfiguring condition. It could be a condition with no medicine!

So be vigilant of your symptoms and be positive regarding the prognosis. Because there is hope!

Best wishes,
Dawn Kevies mom

Maybe just more time. Perhaps by taking good care of your self and resting lots, you just might recover with to much fan fare. That’s what one would hope for! If you have difficulty walking, eating, or breathing, then head right back to your doc and insist on being tested. Of course if your breathing is involved get to the nearest ER immediately.

I wish you well.

daniel,

you DO need a 2nd opinion. where do you live? a doc who never heard of cidp can’t give a 1st opinion. hold off moving till this prob of yours is resolved. take care. be well.

gene gbs 8-99
in numbers there is strength

I think you need a second opinion. Preferraable a neurologist. I was dx with cidp in 2007 and it took a neuro md with nerve tests, blood test, spinal tap, etc to dx.
You do not want things to continue to worsen. A lot of the questions can not be answered until you have a dx.
are you able to pay independently for a second opinion? Or sit your MD down and be insistent on a second opinion and referral to a neuro.
Good luck

Daniel, :confused:

When I reacted to a tetanus shot seven years ago, the symptoms were very bizarre and stretched out over a long period of time. My doctors could not find anything wrong with me and didn’t want to believe it was a vaccine reaction. First, you must find a doctor who considers it possible. Then you must find someone who understands GBS. That can be very difficult because symptoms manifest differently in each person. You can read my saga at:

[url]http://www.whale.to/a/tet2.html[/url]

You may see that the description that I give is similar to what you feel. After several months, new things appeared…humming in my body, ice-pick jabs, more numbness and an episode that left me not knowing where I was. I know that it is hard to keep pushing when you feel poorly, but keep track of what is going on by keeping a journal so you do not forget. I had trouble holding a pen and writing was hard, but it helped me get through the order. These things may resolve with time–and I hope they do.

Take care,

Daniel,

Maybe your doctor should read some things that are on the Internet. A doctor and member of the Board told me that physicians get very little training when it comes to GBS and the many variants that appear. Our bodies are very unique and mysterious — what are we to do??? 😀

Daniel,

That is what I had to do, and with time, my body began to heal. A second opinion wouldn’t hurt if you can find one. I found doctors do not like to disagree with each other and they know very little about vaccine reactions. I bolstered my immune system with COQ10, which is recommended for Parkinson’s and other neurological disorders. Lots of hot baths and rest.

Take care,

daniel,

‘Coul it be GBS/CIDP with completely normal results in that test?’

if the tester is not knowledgeable, the answer is yes. take care. be well.

gene gbs 8-99
in numbers there is strength

Daniel,
Was it a ncv/emg? Also as Gene mentioned, if the right nerves are not tested, or the person giving or reading the test is not good, results could be inaccurate. Did they test for Lupus, MS, a simple blood test for Lyme’s disease, or fibromyalgia? I agree, another opinion would be waranted. If it is not gbs or cidp, it is something, you know your body, you know how you used to feel and how you feel now. Do not give up or in until you find an answer to your questions. Good luck!
Dawn Kevies mom