new here–does this fit GBS? 20 y/o desperate for answers.
AnonymousMay 31, 2007 at 2:01 pm
Hi. I’m a 20 year old currently struggling with some lightheadedness, palpitations which are being controlled with a beta-blocker, and leg weakness (sometimes accompanied by tingling)
Back in winter ’04-spring ’05, I had a pretty bad case of CMV (related to mono) and afterwards I still struggled with fatigue but that was it. In fall ’05, I was rushed to the hospital with palpitations, lightheadedness, and weakness. I was eventually placed on a beta-blocker to control the palpitations, but occasionally I still have problems with them (and if they get bad enough, I get anxious and then I end up in the hospital)
The leg weakness makes me feel as though my legs will give out from under me, and it came on at the same time as the palpitations, but over the past few weeks it’s seemed worse. Admittedly, I’m not sure if it’s worse because it’s actually worse, or because I’m more cognizant of it now that I’ve been home from college for a few weeks. Regardless, I’ve also started having occasional weakness in my left arm.
I just returned from a doctor’s appointment where he adjusted my back (I have some pain in my back localized to my right hipbone, which he’s currently guessing is just a muscle strain) and he wants to get rid of the back pain first to make sure that that is not making me *think* that the leg weakness has gotten worse. I’m supposed to go back in a week to have the weakness investigated if the pain in my back is gone.
From what I’ve read about GBS, it seems to come on only a few weeks after some sort of viral infection. Is it possible that the leg weakness I’ve had for the past year and a half is actually related to GBS and it’s only recently getting worse? Or should I be looking for something else? I spent most of last summer being shuffled between my PCP, a cardiologist, and an endocrinologist (the endo ran practically every blood test possible and didn’t really find anything, and the cardiologist eliminated a lot of possibilities as well.).
Basically I’m tired of not having answers from the doctors and I need to find a direction to point them in. It’s been really scary to deal with this for the past year and a half without anyone being able to tell me what’s going on. Now I’m not even worried about the palpitations so much as the leg weakness itself.
Any info you have would be greatly appreciated!! Thanks 🙂
AnonymousMay 31, 2007 at 9:25 pm
[QUOTE=gene]hi viola & welcome,
where do you live? i may be able to recommend a gbs neuro who could give you an emg/ncv test to determine if you have nerve damage [ie. gbs]. take care. be well.
gene gbs 8-99
in numbers there is strength[/QUOTE]
for the summer I am in the Philadelphia area. during the academic year I’m up in Rochester NY
AnonymousMay 31, 2007 at 9:28 pm
[QUOTE=angel2ndclass22699]Hello Viola, Have you had a tilt table test done to determine why the lightheadedness? That might be a good place to start. have you had any fainting episodes? Take care.:)[/QUOTE]
I haven’t had the tilt-test done because the cardiologist and my doc during the school year (not the PCP I mentioned in my post) both said that they were hesitant to recommend it (according to them, healthy people pass out during that too)
I’ve never passed out/lost consciousness thankfully. If my legs start feeling weak enough that I feel as though I’m going to fall over, I go sit or lay down.
AnonymousMay 31, 2007 at 11:58 pm
NY manhattan – Dr. Norman Latov, New York Presbyterian Hospital. He is very difficult to get appt. with though. I was also impressed by Dr. Dale Lange, very highly qualified Mount Sinai Medical Center. I have seen Dr. Latov’s partner, Dr. Russell Chin. He has been excellent in diagnosing my CIDP quickly, getting treatment started and being available for questions by email (I live over 200 miles away from his office). Dr. Latov and Dr. Chin are in the Peripheral Neuropathy Center, which is affiliated with Weill-Cornell Medical College and N.Y. Presbyterian Hospital. They are leaders in the field of CIDP research. Each time I have gone there, I have seen others receiving IVIg. They also have a very kind and professional staff, which counts for a lot these days. Here is their website: [url]http://wo-pub1.med.cornell.edu/cgi-…eral+Neuropathy[/url]
I went to Helen Hayes in Haverstraw for rehab – I can’t say enough about the staff there. There were several GBS clients there ranging from my “mild” case on up to someone still hooked up to the trach.
Dr Weinberg in Manhattan. he is with NYU. He’s great. I’ve been using him for 8 years now. He’s at 650 1st Ave.
Weill-Cornell Peripheral Neuropathy Center in New York City. My doctor is Howard Sander MD, but I also know Dr. Chin, Dr. Latov, and Dr. Brannagan– EVERYONE there is top-notch! [url]http://www.cornellphysicians.com/periphneu/[/url]
I am also a patient of Dr. Howard Sander, and highly recommend him. He was with the Cornell Peripheral Neuropathy Center (and Drs. Latov and Chin) for years, but is now back at St. Vincents Hospital, 170 W. 12th Street, Cronin Building, Room 466, New York, New York 10011. Phone 212-604-7760.
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
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.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 1, 2007 at 5:57 am
Wow, Gene!!!:) 🙂
You are awesome with all that knowledge of GBS neuro specialists and their locations! You must make a career of researching this kind of stuff. 🙂
I know that you have helped MANY people in their search for a Physician that can help them. You are great…..and I thank you.
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