Can anyone shed some insight???
-
-
March 13, 2008 at 10:05 am
Hi!
It’s been some time since I’ve been on here… my name is Erin and I’m from Pennsylvania. October 13th 2006, my fiance rec’d his first flu shot. About 30 min after he started to get a headache that creeped up the back of the one side of his head. Well for two weeks he suffered with this head that got progressivly worse. Then halloween weekend- 2 weeks after I came home one evening to find him on the couch. His Vision was affected, his balance, he was leaning to one side. All of his symptoms started in his head and crept downward. He was very sick. At first I thought he was having a stroke, but all of his symptoms were just not matching up. The next morning we traveled to the ER- the dr. evaluated him, performed a CT Scan and thought either A- he was on drugs, (of course he was not) or B- he was suffering from severe migranes and sent us home. I was so upset… he could walk, could barely move, and I had to go find a wheelchair, take him out, try to get him in the car myself. The next morning he was worse. His balance was off, still leaning to one side, had double vision- his pupils were “bouncing around” he couldn’t focus with his eyes, he said to me it felt like he could be cut in half— because one side he had the burning sensation numbness, poor temp. control, the awful headache continued. I found him a PCP and took him in- he was admitted to the hospital right away. After numerous tests— the Neuro and PCP told us he had Miller Fisher Syndrome. But the odd thing is— in his spinal tap his protein was not elevated. I thought I read somewhere- either they did the test too early and that in 10% of pts, there are no elevated levels…. So he was in the hospital 2 days and sent home. My family and I cared for him. The next week he went for IVIG treatments…. He was off work for 3 months, and still suffering the effects from it all. Being that the DR’s beleive it was from the flu shot we filed with the vaccine compensation program. Our laywer is wonderful, but Corey’s neuro did send his medical records but will not write up a narrative to be sent in with all of his records, ” the neuro says— he doesn’t like to bother with paperwork”. Corey then went for a second opinon and the dr. said I think you have had a stroke…. but it just does not add up. I’m am trying to do research and looking for a Dr. that specializes in treating GBS and MF to help us. We have been having difficulty bc he lost all that time at work, thankfully for our families have helped us get back on our feet. Can anyone give any advice who has gone through the compensation program or know of any good doc’s in PA???Thanks guys!!!!
-
March 13, 2008 at 10:25 am
[FONT=”Comic Sans MS”][SIZE=”3″]Erin,
Sorry i can’t help you out with regards to the compensation program, but i know there are many people on this site who have or have dealt with gbs/mf syndrome and am sure you’ll be hearing from them.
After 2 weeks of a nightmare at a local hosp. (Lehighton, PA) was lucky enough to land myself at Lehigh Valley Hospital, Cedar Crest, in Allentown, PA
There are 20 or so wonderful Neurologists on staff and it’s also a teaching hospital and i never felt so cared for!
My initial lumbar puncture also showed no elevated protein levels, but emg/ncv and other symptoms led to a dx of gbs (Aug 07), later changed to cidp (Oct 07)
Plasma Pheresis took me from walker to cane in 2 weeks, and am slowly getting back up to speed, currently at about 90%
Don’t know if you are anywhere near Allentown?
I wish you the best, take care
Veronica[/SIZE][/FONT] -
March 13, 2008 at 6:31 pm
PA Dr. Weisman with the Neurological Associates of Pittsburgh. He has colleagues that specialize just in GBS. Pitsburgh has a number of doctors that are very knowledgeable with GBS. hospitals – Presbyterian, Mercy or UPMC.
I was quite impressed with Rodney Bell, M.D., head of the neurological intensive care unit (NICU) at Thomas Jefferson University Hospital in Philadelphia, PA,
Dr Tahmoush’s main office is in Philly. his Trenton,NJ phone # 609-599-5792
Thanks for the update, as well as the list of doctors. I have an appt set
up
for April ( four month wait) to see Dr. Belsh out of Robert Wood Johnson in
New Brunswick, NJ. If he doesn’t seem to be knowledgeable, based on the dept
head’s recommendation, then I know that I have to commute further to the
list of doctors that you recommended. There are 3 good doctors down at U of
Pa. Shawn Bird, Steven Scherer, and Mark Brown.- of these has written
papers on GBS; the U of Pa website says which one.I feel I was very fortunate to have Dr. David Weisman, M.D. of Abington Neurological Assoc. out of Abington Hospital, in Abington, PA which is outside of Philadelphia. Dr. Albert Waxman, M.D. out of the same office actually diagnosed me and I found him to be great also.
take care. be well.
gene gbs 8-99
in numbers there is strength -
March 13, 2008 at 6:48 pm
Has Corey had an MRI of the brain and possibly MRA/MRV? The MRI would show if there has been a stroke and is much better than a CT scan especially for some areas of the brain like the brainstem. It is really unusual to have pain and symptoms immediately after a flu shot–usually it takes a short while for the bad immune response to gear up–usually over a week or 10 days at least. Was the burning sensation in the head or face? The MRI with vascular imaging could also exclude other causes of headache and burning sensation. It is hard to know without knowing the distribution of symptoms, but one always wants to make sure that a vascular lesion or even small mass is not the cause of something of rather abrupt onset and such severity.
WithHope for cure of these diseases
-
