GH
Your Replies
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February 15, 2017 at 2:02 am
Brokembow, do you mean that you recurring episodes in which your legs get weak then gain strength? GBS is not like that. With GBS there is progressive weakening to some maximum degree, then recovery (which may or may not be complete). It is not like a roller coaster.
Do you have a diagnosis? Do you have a neurologist? The first thing is to have a neurologist nail down the diagnosis.
February 12, 2017 at 8:06 pmThe influenza vaccine may trigger a few cases of GBS, but there are no studies that show it so the effect must be very small if it exists at all. The incidence of GBS is the same comparing those who have been vaccinated against those who had not been.
I had CIDP, but similar to GBS. I had never had a flu shot in my life. While I was in the rehab hospital the nurses offered me one. I declined, having read of a possible connection, but since then I read up on it thoroughly and changed my mine. I now get a flu shot every year. Because of my age I get the high-dosage version. I have had no side effects.
Influenza is more dangerous than the risk from the vaccine. In my case, it is also important because I visit hospitals and want to minimize the risk of being a carrier.
February 6, 2017 at 2:40 pmGuillain-Barré is considered a medical emergency because it can cause impairment of breathing. In some cases, the paralysis progresses very rapidly, so it is indeed a real emergency. More typically, the rate of decline is slow enough to allow time for the diagnosis to be made and treatment to be started. In any case, earlier treatment generally leads to better outcomes.
Try to get a neurological examination as soon as possible. If your primary physician won’t cooperate with this, I would try to change doctors. Don’t take no for an answer. You are entitled to a competent diagnosis, in my opinion.
February 6, 2017 at 12:56 pmGBS and CIDP tend to be bilaterally symmetric, so your pattern would be atypical under that diagnosis. Whatever it is, I think you need a neurologist. Primary physicians and ER doctors generally cannot diagnose neuropathies. I don’t understand why your primary didn’t refer you. You should get a referral as soon as your primary determines that your problem is neurological.
February 6, 2017 at 12:46 pmA very good outcome. Best wishes for your continued recovery.
February 4, 2017 at 12:45 pmIs your prednisone being tapered down? I took mycophenolate with prednisone as the latter was being tapered down, eventually to zero. Then the mycophenolate dosage was reduced periodically. I am now off all meds for my neuropathy.
I had no problems taking either prednisone or mycophenolate. Your experience may vary.
February 4, 2017 at 12:40 pmI took mycophelate mofetil for a couple of years. The two drugs, although similar, are not interchangeable because the rate of absorption is different.
January 24, 2017 at 9:01 pmThe British may use “ae,” but I don’t and Americans generally don’t. Oxford gives both spellings.
January 24, 2017 at 1:47 pmWe already knew that excessive salt was a problem for other reasons, so I’m doing nothing differently based on this. It is a preliminary result which merely suggest a line of further research. It does not explain the etiology of GBS or CIDP.
January 23, 2017 at 12:47 pmIt’s better to ask your doctor about it. There could be several causes and you should not fixate on any one possible cause.
January 22, 2017 at 5:01 amIf a neurologist tried traditional Chinese medicine on me, I would start looking for a new neurologist right away.
January 22, 2017 at 4:52 amDr. Collins was my second neurologist and I highly recommend him.
January 22, 2017 at 4:48 amThe first thing you should do at this point is to consider the suggested alternate diagnosis and try to confirm it or to rule it out. Brachial plexopathy is not a form of CIDP. A description can be found online.
January 20, 2017 at 11:13 pmThere is no simple answer to which treatment works better. IvIg is effective for many, but it didn’t do much for me. I was switched to PE and never had IvIg after my initial two loading doses failed to arrest the progress of my illness. There is an infection risk, but that’s true of other things which are commonly used such as PICC lines. The medical people are all aware of this and they watch for signs of infection.
Treatment of CIDP is not cut and dried — it sometimes requires trial and error.
January 20, 2017 at 12:49 pmThere are mild cases of GBS, but it is a mistake to self-diagnose. Just ask your neurologist what she thinks. It is best to discuss any aspect of your case which is bothering you.
