AnonymousAugust 15, 2006 at 1:01 pm
Hi all. I went to the neurologist yesterday after experiencing increasing numbness and weakness in my feet and legs over the last 3 weeks. I cant feel my toes or the majority of my feet. Kinda feels like I have really thick socks on. And my legs are tingly and VERY weak. The Dr. said that his initial thought was GB, but the fact that I still had some reflexes in my knees made him think that GB might not be the case. I do not have any reflex in the bottom of my feet and the Dr said that my knee reflex was “over active” (it felt like electricity going down my leg when he used that little hammer) and that in typical GB you did not have any reflexes.
The Dr has ordered all kinds of bloodwork (they took like 15 vials yesterday) to check for things like mono and lyme disease and who knows what else. He also ordered a spinal tap and an MRI but I have to wait a week for the tap and 2 weeks for the MRI. The Dr cautioned me that if I got any weaker or started having incontinence to call him right away and he would put me in the hospital. But that he doesnt “think” that will happen.
Has anyone else had a similar experience? Part of me wants to put myself into the hospital so that they can get these tests over with and decide if it is GB so that I can start treatment to increase my chances of a better recovery and hopefully avoid a long hospital stay as I have a family and job that depends on me. I am scared at the thought of waking up tomorrow and not being able to walk or worse. Even more so, the thought of being laid up recovering for weeks, months or years is terrifying. I guess all in all I have it better than some, but I am still scared. Any info would help.
AnonymousAugust 15, 2006 at 2:59 pm
There are many like diseases with similar to same symptons, and that’s why you have to have all those tests. Even in an ER having an attack on the spot, weather a doc suspects GBS or not, you still have to have those tests. Sounds like the doc instructed you well, and other then speeding up the test time days, there’s not much you can do. Things get worse, hit the ER. Hope you get an answer soon.
AnonymousAugust 15, 2006 at 6:03 pm
Girl, I know how you feel. I had GBS in Feb of this year, two young boys at home, nursing school and a job. I know the thought of a long hospital stay is not in the cards, but if it is GBS, the sooner you get treatment, the sooner you can get back to your kids and life. I was caught early on, so I was in the hospital for 2 weeks. I was able to go to my family and have outpatient rehab because I was doing OK. I had a walker for a week, and then a cane for a month. It is also possible it is not GBS. I hope you get a speedy diagnosis. Please let us know how you are and what’s going on.
AnonymousAugust 15, 2006 at 9:11 pm
That’s interesting about the reflexes. Racer13 is correct, there are many neurological disorders with similar patterns and symptoms, and it’s best to let the tests tell you what is going on.
I sympathize with you on the waiting game, but I doubt that it would move any faster in the hospital – just more expensive. I recommend that using the waiting time doing something therapeutic, like yoga. It will help your discomfort.
Best of luck to you!
AnonymousAugust 15, 2006 at 9:45 pm
hi kelly & welcome,
add shortness of breath as a critical need to rush to the er. call your doc after you are there. more importrant than the spinal tap [lp] is an emg/ncv. the lp can give false negatives. the mri needs to include the spine as well as the brain. it determines ms or not. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 16, 2006 at 9:41 am
Thank you all for the input and support. Today I have more weakness (it was all I could do to dress myself and get into work) and the numbness has moved past my knees. I am also having awful cramp-like pains in my thighs and calves right around my knee joints. Debating on call my doctor.. I just dont know. :confused:
I really like this site so far. There is alot of information to be had. In some ways I think the more you know the better off you are, but while in limbo for a diagnosis the more info I get, the scarier things seem.
AnonymousAugust 16, 2006 at 10:32 am
I know its not what you want to hear, but when you get this message, go to the hospital. Dont go to a small one, go to a larger one, preferably a teaching hospital. Your numbness, is slowly creeping upward, and it can affect your chest area. Dont wait for tests, if you go to an er and present w/your symptoms, you will get your tests done quicker. (prob within 24 hours.)
AnonymousAugust 16, 2006 at 2:08 pm
Ditto everything said already …..please do something asap. [B]IF[/B] it is GBS, the IVIG or Plasmapharesis should be done ASAP to stop any further nerve damage. Remember what Gene said, spinal tap sometimes does give a false negative, something to keep in mind in case it does come back negative. I know this is probably hard as well, but you have to be vocal about your treatment – insist on things and ask why and why not all the time.
AnonymousAugust 16, 2006 at 7:04 pm
ditto all before me. you need help yesterday. your nerves are being destroyed. go to an er & demand to see the oncall neuro & then demand an emg/ncv. he will know the results immediately no matter what they say to the contrary. then demand ivig or plasmaphersis. it’s your life kiddo not theirs. fight for yourself or suffer major consequences. got a friend who is not meek that can go w you? take care. be well.
GA hospital in Atlanta “The Shepherd Center”. Excellent facility that treats on average 50 cases of GBS a year. It is a catastrophic care facility that deals primarily with spinal chord injuries, MS, GBS etc, [url]http://www.shepherd.org/[/url]
Emory University in Atlanta, Ga. The head neuro when I was there (’99) was Dr. Owen Samuelson, but he had several sharp assistants and interns. A young resident actually diagnosed me.
southern GA. I was dxed and treated in LaGrange by Dr. Reza Sabet.
Dr. Gotay in Gainesville and he is just awesome. He was able to see me immediately and started the IVIG the same day
southern GA If Tallahassee is not too far of a trip for you might want to get in touch with the Tallahassee Neurological Clinic at (850)878-8121. They have done wonders with me
gene gbs 8-99
in numbers there is strength
AnonymousAugust 22, 2006 at 11:27 am
Sorry to all you wonderful caring people for not posting sooner. I have just been so exhausted that even the smallest tasks really take it out of me.
To update: I went to the ER on last Thursday. My facial numbness was increasing and the electrical shock-like pains down my body had me in tears. I got really scared so I sat in the ER for several hours only to be talked down to and looked at like I was crazy. I was asked many times how come I said my feet and legs were numb and getting number, only to also claim they were tingly? Also, how can I claim to be numb AND experiencing the terrible tear-jerking stabs of pain? I believe they thought I was an idiot and just looking for sympathy or drugs.
Finally after lying there crying for a couple of hours and my mom stepping in with her 2 cents, they sent me for a CAT scan “to rule out” a stroke. The on call Dr. claimed to have called and consulted with my neurologist over the phone and that “they agreed” that is sounded like a complex migraine. So at that point I was given a huge injection of morphine, halodol (sp?) and benedryl and promptly discharged! Hello? They gave me this drug cocktail and then let me leave???? (side note- I do have a history of migraines, but NEVER EVER like this) I was SO pissed off.
The shot doped me up so much that someone could have cut off my arm and I wouldnt have noticed. I went home and slept for many hours, not waking up until after 12pm the next afternoon. When I woke the pains and new numbness was gone, but the major fatigue and weakness in my legs remained. I spent the weekend trying to rest and not over do it as I noticed that if I spent any more energy than what was required to breathe I would start having a migraine-like headache and the sharp pains would start coming back.
I am going for my lumbar puncture today and to have a few words with my neuro. I will wait and chew him out AFTER he does my LP as I dont like the idea of pissing off someone who is about to stick a needle in my spine… 🙂 I thought about changing doctors, but supposedly he is one of the best in my area and then I would have to wait for an appointment and schedule tests, etc. My goal is to get my tests done, demand a copy of my file and then take them to another doctor for another opinion. I also have an MRI scheduled for next week. 3 hours lying in a tube sounds so much fun.
Sorry to be so long winded. But I wanted to update you wonderful people. Ya’ll have been great support and it has been much appreciated as I dont get much emotional support from my hubby as he doesnt handle medical problems well. He is a strong, smart man but he just doenst get medicine. Plus he hates things being wrong that he cant fix and currently he sees me as need repairs and he is qualified. 😀 God love him.
Still waiting in limbo,
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