What does this sound like to you?? GBS or ????
AnonymousJuly 27, 2007 at 9:38 pm
1 week ago last Wednesday my wife started complaining of her feet being numb, by Sunday the numb feeling had progressed up her legs. On Wednesday we went to the neurologist, by this time the numbness had progressed up to her tail bone. The doc stated that he didnt believe that it was GBS when we asked him about it, he feels that it may be a pinched nerve. She has a MRI in the morning. Today the numbness has affected her feeling in her bladder. She still has good muscle control and is still able to walk although she trips a lot. She has no pain in her back or anything just cant really feel anything from her navel down. As time goes by the numbness seems to be progressing up her body.
Any thoughts would be helpful
AnonymousJuly 27, 2007 at 10:19 pm
They probably need to read the MRI and rule in/out the pinched nerve. Who knows what other possibilities exist. There are in office tests the neurologist can perform to see her responsiveness prior to a nerve conduction study that may indicate GBS. I had a MRI as well as nerve conduction tests within the same week if I remember correctly. They were inconclusive so I was chasing treatments/relief at a chiropractor’s for a few more weeks before the neurologist did another nerve conduction and was convinced that it was GBS. I’m not sure it’s all that easy to diagnois. Good luck.
Whatever you do keep pushing and ask questions. And keep a positive face on with your wife–she NEEDS you now more than ever. Trust me on that one.
I’ll say a prayer for you two tonight.
July 27, 2007 at 10:20 pm
Tripping was our last red flag. We went straight to the er, had a spinal tap, gbs was confirmed. Kevin (my ten year old son) had his first ivig the next morning. By the second day of ivig, he could not only walk agin, but was running down the halls. It does sound like GBS to me, and the longer you wait, the more damage. IVIG or pp halts the demylienation process, therefore preventing further damage. It will not cure her or fix the damage, just stop it from progressing.
We did have a positive spinal result, but you may not, not all patients do. If the results are negative insist on a ncv/emg. Print some info up from here or the ninds sight, bring it to the er. Has there been any type of illness lateley, respiratory, intestinal, fever, shots, anything out of the ordinary? If so, pinpoint the date and bring this up to the doctor as a possible trigger of the gbs if in fact it is. My son also had bladder issues and within 6 hours developed breathing issues. This sealed the deal to find another doctor that would listen to us! He did and he is the one who set up the er. Good luck!
Be strong, forceful and come well read so that they can not disregard you. Maybe it is something as simple as a pinched nerve, that would be great, but knowing how fast my son progressed, I would not wait!
Dawn Kevies mom 😮
AnonymousJuly 28, 2007 at 7:14 am
Kevin listen to Dawn. If she ate bad chicken recently or had a virus or a vaccination that is some of the triggers for GBS/CIDP. GBS hits and the worse is over in 4 weeks so you want to get IVIG as soon as possible. The spinal tap might show if it is GBS or CIDP. I have a mild case of CIDP. I had a spinal tap 6 months later and it was normal. Please if you have to see a different DR do it. Everybody symptoms are slightly different so keep pushing to get a diagnoses.
Also where do you live. Gene might know of a good DR in your area to go see. Also who is her DR now telling you it is not GBS? If she is having nerve pain Gabapentin/Neurontin is good for it. Watch for her breathing. Some people not all with GBS have trouble breathing. You have to fight to get the DRS to listen to you.
AnonymousJuly 28, 2007 at 9:09 am
hi kevin & welcome,
politely demand a a lumbar puncture looking for a protein count over 55. also a nerve conduction velocity. where do you live? if the neuro won’t do these 2 tests i may be able to suggest a different neuro. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 28, 2007 at 9:12 am
hi kevin & welcome,
politely demand a a lumbar puncture looking for a protein count over 55. also a nerve conduction velocity. as sue asks, where do you live? if the neuro won’t do these 2 tests i may be able to suggest a different neuro. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 28, 2007 at 12:05 pm
wonderful advice from everyone. Reading what Dawn said about going to the ER ….. If you do go the the ER, they hopefully will do spinal then and there, which is a good thing, otherwise you have to wait for the neurologist to book a spinal tap, and that could be in a week or two.
If it is GBS, then IVIg or Plasmapharesis is needed [B]ASAP[/B]! If you go to the ER, go armed with some info from the Foundations site, just in case you need to refer to it.
Keep pushing Kevin, whatever it is, specially if its moving up, the quicker you get test results and treatment the better it is. Others suggested moving on to another doctor if your neuro is not receptive or understanding ….. that’s a really good idea. Dawn said to the other day, if you dont shout, you wont get results …. that too is a really good idea.
July 28, 2007 at 1:22 pm
Mine started the same way. I, too, thought maybe I was experiencing a pinched nerve. But, one thing all the info I looked up said was “A hand or foot falls asleep…” I took that to mean both wouldnt and it certainly said nothing about that feeling progressing up my legs and arms or making my legs feel as if they weighed a ton. And all the info I searched thru kept leading me back to GBS! As everyone else here said….GET TO THE HOSPITAL AND DEMAND HELP. Do not let them tell you she is crazy, do not let them downplay this, do not let them run the show. Docs dont know a lot about this, more than most dont know a thing. And if ya dont go in with text book symptoms they will blow ya off. Even the orginal men researching this who made a list of symptoms said that that list was ONLY a reference piece. It was not written in stone and not everyone will present EXACTLY that way. Doctors use that list as if it is the only way to diagnose GBS, and remember, lumbar punctures can provide a false negative. INSIST on a nerve conduction study immediately! The doc seeing me, blew me off when the lumbar puncture was negative even after he had told me about the nerve conduction test and explaining it was another way to help diagnose GBS. If your wife has progressed this far so fast, it could be dangerous for her not to be in the hospital. GBS patients have good recovery rates, it may take a while, but she will be okay. and she will be okay even faster if she is receives the proper treatment.
Please keep us informed.
HUGS and prayers!
AnonymousJuly 28, 2007 at 11:21 pm
Hi Kevin, Welcome to the Family, Your Wife also. Go to the ER and describe in Great Detail All that she has been feeling(or not feeling) and don’t mention what your Neuro said. Let the er drs make their own assumptions. Insist on emg/ncv, spinal tap, and a ct of the spine. If she has any signs of an infection along the spine, it might show up or it might not, but in any event it could and if it does then she has more then just a possible pinched nerve. Pain isn’t always present in gbs/cidp, some people can have gbs without pain, and have a low protein count and still have gbs. She is having progressive symptoms in the right time frame for gbs. Don’t wait any longer, go!!!
I went to sleep one night, with a slight breathing problem and dypsnea and I woke up 2 hours later paralyzed from the face down to my toes-no pain at all except for a severe headache on one side of my head. Since I was not treated with Ivig, I have relapsed several times in the last 2 years. Don’t Wait! let us know what comes of Her visit.
AnonymousJuly 28, 2007 at 11:39 pm
I read this thread after the other thread. Please read my response. It would be very very unusual to have a pinched nerve with out pain. Also you can have a normal spinal tap and nerve conduction test with early GBS. So don’t let that throw you. Please demand hospital and treatment tonight. Dr. Shawn (mine where both fairly normal in the 1st 24 hours and delayed my treatment with devastating consequences)
July 29, 2007 at 6:12 am
well my exspirent of pinc nerv and GBS is not the same you get usaly much pain but you dont have much pain when GBS onset you. I started very similar as your wife so get to the ER and get ask and get treatment, it is critical to get the right away,
take good care of you and your wife this can be long road ahead in recovery
AnonymousJuly 29, 2007 at 5:50 pm
I talked to a family friend who is an Internist and asked him about the ER and what would be the best course of action at this point. There are no ERs in my area that have the abilty of doing a NCV. He agrees that this does not sound like a pinched nerve in any way nor does it sound like diabetic neuropathy. He agrees that it does indeed sound like GBS, however even if we did go to the ER today that barring respiatory problems we would just be sent home.:mad:
Thanks every one.
AnonymousJuly 29, 2007 at 9:25 pm
Mrs M and Kevin, where do you live, maybe we have a laiison in your area, or someone knows where you could go for treatment. It is really important for you to get a dx and to start on ivig or pp as soon as possible. it won’t cure gbs/cidp, it will slow the progression of the damage to the nerves, Trust Me, You don’t want to deal with alot of damage especially when you have young kids to care for. Rethink going to an ER or hospital.
AnonymousJuly 29, 2007 at 11:39 pm
I wish I would have had treatment even 24 hours earlier than I did. Every hour counts if it is GBS. Also there may be no warning with respiratory arrest so you need to be monitored in hospital so if you stop breathing they can intubate you. If this happpens at home your survival will be doubtful. Also the longer you wait the more nerve damage and less likely for a full recovery. If your hospital does not have an on call neurologist then present to a larger hospital. Also if a nerve conduction is not available and you meet clinical criteria for GBS they will either ship you to a hospital that does or start immediate therapy. Initially GBS is a clinical diagnosis and like I said (the research says) the NCV and the spinal tap may be negative at the begining but this should not delay treatment. Go to the ER! Don’t let them send you home. Hint- when a patient refuses to leave we just admit them. Stand your ground. Bring GBS info with you. Dr. Shawn
AnonymousJuly 31, 2007 at 12:06 am
Well it’s been a long day. But here goes our story of what we found out. My Neuro really still feels that it’s not GBS. Did a nerve study thing and it came back great. My MRI showed that I have some Stenosis, but that’s something that probably has come on over time. Kind of like Arthritis of the lower back. Anyway, he wants me to have another MRI and this time they will look at the brain and see if I might have MS. He also wants us to go to a big hospital here in Oregon and get a second opinion. He is really concerned but yet, I am a mystery to him and he doesn’t want to do surgery until it’s the last resort. The thing about it, is that my numbness and stuff has stopped at my hips. I did tell him that if I feel like it’s going farther, then I want a Spinal Tap ASAP, and he agreed. He wants to rule out MS. So I guess we keep trudging on and figuring out what is wrong. I hope that I haven’t confused you all. I really appreciate everything that you guys have suggested. We will keep you posted.
AnonymousAugust 5, 2007 at 8:24 pm
Hi Matfam Family,
Just wondering how things are going. My fiancee waited a week to go to the hospital too, despite the numbness progressing from the feet to the waist, the hands and his lips and face. By the time I finally got him to go to the ER, his legs were rubbery, and he was in a lot of pain. They started out with a CBC and MRI to rule out MS, then moved on to CTScans and Spinal Tap. He was diagnosed within seven hours and admitted to CCU. Twenty-four hours later, he was on the ventilator in a medically-induced coma.
I hope everything’s going better and that the numbness finally went away. Please let us know.
AnonymousAugust 30, 2007 at 10:15 pm
I have actually come quite far. It has been 7 weeks since all of the testing begun and after having a Spinal Tap, it looks like I am in the early stages of MS. Kind of a drag really, because I have no brain lesions and so we will have to do MRI’s at least once a year for the next 2 years. If I don’t have anymore “attacks” and no brain lesions, then I probably don’t have MS. My doctor feels that it is though. So that is the update on me. I had 3 Cortisone treatments 2 weeks ago and the numbness is getting so much better. I am still really tired, but I am taking it easy and just waiting for everything to return to normal.
Thanks for all of your prayers!
You must be logged in to reply to this topic.