Newly Diagnosed in January
AnonymousFebruary 7, 2007 at 7:18 pm
I am just learning about GBS. My almost 2 year-old daughter had RSV at the end of December and we think that was the virus that I had contact with that started all of this. My first appreciable signs began 1/5/07. My diagnosis at this point is probably GBS. I am really frustrated. I feel like I am seeing a good/competent neurologist, but this is really a damnable condition. It began with feeling like I was going to faint just a couple of times when I went from sitting to standing (thought it was just normal change in blood pressure). My legs felt a little wobbly. I felt fatigued, but what mother of a toddler doesn’t feel that way? Anyway, the “fainting” episodes increased over that weekend until Monday I felt like I was going to faint even when I was laying on the floor. I had major pins and needles in my hands and feet and face. I went to Primary Care. He referred me to from here on our referred to as Idiot Neurologist that I was seeing for migraine headaches. He prescribed prednisone. It did nothing. He set up an MRI to rule out MS, etc. Things just kept escalating. After a week I kept getting weaker and where it was pins and needles it became numbness and then pain and numbness. Idiot Neurologist prescribed pain medicine, but didn’t hasten the MRI or do anything else to diagnose or alleviate my now near panic at the fact that I could practically not ambulate at all. I am lucky enough to work with a pediatric neuroligist who I called for advice when I couldn’t even get Idiot Neurologist to call me back with MRI results that I had rushed and faxed to his office. BTW, he NEVER called- EVER with any results- I NEVER heard another word from the man when I left his office in a wheelchair. Anyway, the pediatric neurologist that I work with told me that I needed to go to the Emergency Room. I went. I was admitted on a Friday. They read the results of the MRI- no MS- no lesions- everything benign. They ran even more bloodwork. My potassium was low- okay, that of course explains it all, right? They called in the neurologist that the pediatric neurologist wanted me to see. He ordered every test under the sun. I was admitted because it was the weekend and to have them done took forever. Bottom line though- no protien in spinal tap. Basically normal EMG. Incredibly weak on exam. No reflexes. Finally discharged home for PT at home. Have incredibly cruddy benefits that cover only 20 visits per year including everything- trying to fight that now. I am getting slowly stronger. Not using walker as much in the house, etc. Now suddenly a month from symptoms I am having earthshattering 10 out of 10 (I am not a whimp normally), writhing pain. I can’t pinpoint all of the pain… it is kind of like arthritis all over my entire body, but not really. Then I take a shower that is a normal temperature and I feel like someone has taken a blowtorch to my feet and hands. I went to an emergency work-in appt to the neurologist today and they prescribed major narcotics and neurontin. They ordered a whole plethera of blood tests because he thought that the pain sounded not like GBS. HELP! Does this sound like it to you all? I don’t have any actual “proof” that I have it. Thanks for reading this far. I won’t go on and on every time.
Probably GBS 1/5/07
AnonymousFebruary 7, 2007 at 9:01 pm
Elizabeth, don’t worry about your long thread. I would guess you’ve read some of the posts and know how different GBS presents itself for each individual. The way your early symptoms presented were very similar to my own. We finally went to the emergency room at my Primary care Dr. suggestion just so I could get admitted. My protein levels in the spinal tap were low also. I laughed when you referred to ‘the idiot neurologist’. We referred to my neurologist as “Dr. Moron”
There are a lot of well informed individuals on this site. Keep checking in and find another opinion.
Take care, hang in there.
AnonymousFebruary 7, 2007 at 10:48 pm
Your case sounds somewhat similar to mine. My symptoms progressed over a couple of weeks. Originally, my family doc put me on prednisone thinking it was some kind of autoimmune problem. I could barely walk (I know that is lucky, but I didn’t know then how lucky I was) when I was finally hospitalized. Weekend neuro said GBS, wanted to start IVIG. Monday neuro cancelled IVIG and did all kinds of tests — ruled out MS and lupus. My spinal tap showed elevated protein, but nothing alarming. Nerve conduction studies were somewhat abnormal. 5 days later, after many tests and some PT & OT, sent me home with diagnosis of some unknown virus. I kept having weakness and tingling/buzzing feelings — ended up at Mayo in Rochester where they decided I had a mild case of GBS. I am 6 months post-GBS and still have pain, tingling and weakness in my feet and legs (arms too — some days). My leg strength is coming back slowly. I lurk on this site to get answers to all the questions my neuro did not answer. He thought if I did have a mild case of GBS, I should have been completely recovered by mid-September when I saw him (I was hospitalized in August). Reading other GBS stories on this site has really encouraged me on some awful days. It also helps me realize I’m not nuts — these are REAL feelings and it’s gonna take time! Good luck with your journey to recovery!!!! I hope you are also encouraged by all these courageous, good people!!
AnonymousFebruary 8, 2007 at 12:38 am
Welcome to the GBS Family.
Everything you are experiencing, pain, temperature(feeling like legs and feet are on fire) pain, numbness are all the typical things that go with GBS. Tell the idiot neuro that extreme pain does go with GBS. They all read their textbooks and believe what they read because most of them have never had a patient with GBS and don’t know what to actually do.
Take the pain meds and the Neuronton, it will help you. Try not to overwork your body in any way because you could cause a setback for yourself.
Wishing you the best.
AnonymousFebruary 8, 2007 at 1:11 am
As others will tell you, GBS presents many different symptoms in individuals, and many of the symptoms can suggest other problems.
My Internist is also a professor of Internal Medicine at UC Davis in California. When I first mentioned early symptoms, he (and I) thought it was a reaction to some meds I was on (I had a serious, rare infection in my liver).
Within a few days I was brought to the ER by ambulance from home, and again they kept trying to rule out all sorts of things. After 8 hours in the ER and all sorts of tests they got to GBS.
My young neurologist only needed to do a spinal tap and find protein in the fluid to nail the diagnosis, but I kept him waiting an extra 3 days before having it done. Once he did it he ordered three days of Immunglobulin.
I was nearly put on a respirator the first evening after the ER, the attention I got was terrific….. I couldn’t speak well, my vision was affected, I was quite paralyzed. But by the next day, without any meds, I was beginning to improve. By the second day I was able to get out of bed and walk even though I could not feel my feet or lower legs.
On the third day, before meds, my vision cleared up, my speech was almost normal.
My neurologist and another more senior one, both very familiar with GBS, et.al., were dumbfounded over my recovery! Of course I’m still “recovering” over a year later…..but my life is pretty much back to “normal” (I wasn’t all that great before the GBS).
So, hang in there.
AnonymousFebruary 8, 2007 at 8:45 am
hi elizabeth & welcome,
if it weren’t for the normal emg, i’d say you have gbs. the emg can be wrong, but if administered correctly, seldom is. regardless you need to try neurontin. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousFebruary 8, 2007 at 9:50 am
Thank you to everyone for your replys and stories. It helps. Gene, I think you were the one who said something about my normal EMG. The tech who did it in the hospital said that it could have been just too soon. She said that the EMG is behind what the nerves are actually doing. The implication to me was that if they did another EMG now that it would not be good. I don’t know though. I will talk to my new neurologist Monday. Thanks for the additional Neurontin info. My mother-in-law knows someone personally who had GBS and is actually a member here. She had the booklet that was written with all of the info. I read that last night. Frankly I am going to take it to my doctor. He has been involved in the treatment of a couple of patients, but he practially brags about the few that he has treated and they are all different, drastically different.
Anyway, I didn’t want to go on and on- after the narcotic and neurontin and pain I don’t have the energy to go on and on. I have the option to work from home some, but I am afraid that I might not be clear headed enough. I am very tired, etc. The problem is that we really need the money and I have work to get done. I can tie up a few things and then I may just have to let work go. The problem with that is that I am “as needed” or PRN if you know that term and I am afraid that when I finally am better they aren’t going to need me anymore. I have no sick time, etc. I know that these are stresses that everyone has faced, but I am not protected by any disability, etc. We have great family amd friend support. We even have family financial support if we really need it. I am humiliated at the needing it, but I have an almost 2 year old so I will do what I have to do. I am having to send her to the sitter the 2 days that she was going and even a 3rd day just because I can’t take care of her and then her grandmother is keeping her the other days. Okay, now I am just blathering… sorry. I am just so stressed about what to do about working, finances, etc. I know that I have to let it go and rest, but it is so not my nature and it is just sitting there waiting to get done, etc. AAAAAAUUUUUUGGGGHHHHHH!!!!! And I HURRRRRTTTT!!!! It isn’t as bad as it was…. it isn’t. I shouldn’t even complain compared to yesterday morning, but darn after over a month of this I am exhausted. I don’t know how some of you have already done 6 months and more. I know that I will get through it. I am just at that AAAAAAAAAAAAAUUUUUUUUUUUUGGGGGGGHHHHHHHH!!! point right now. I guess that is normal. Heck, who cares what is normal, right? Nothing is normal about what is going on here. GBS or not. Okay, starting to sound depressed. I am going to go run around the block and shake it off… oh, that’s right… I can’t do that… LOL… just kidding… I am going to be okay… thanks for letting me melt down. My arm is shaking like a leaf from all of this typing. I am going to go sleep now. Thanks for the support.
1/5/07 Probable GBS
AnonymousFebruary 8, 2007 at 1:49 pm
My mom has been in the hospital in ICU for almost a week now. Her diagnosis was delayed. SHe is on a respirator and recieving plasmophoresis. She is in the Herman Hospital in Houston now and they seem to be right on top of things. The diagnosis was delayed at several other hospitals, including the small town where I live. She left the emergency room here on demoral a week ago saturday to attend her grandson’s wedding (my oldest son!) It is hard to see her laying there with all the tubes etc. She is being tied down because when she is concious enough for doctors to check her pulmonary ability, she tries to pull everything out. Lousy disease. I am thankful to find this support site. Mike
AnonymousFebruary 8, 2007 at 3:25 pm
This is the place to vent and ask questions. I was on the vent 13 days and they put me in a drug induced coma actually. I’m told I was in restraints even though I couldn’t move from my neck down. The CCU stay was 4 weeks then inpatient rehab hospital 4 weeks. I was in CCU because ICU was full, and I’m glad because I got excellent care in the CCU. If only the doctors would come to this website and study the experiances of actual patients . I was very lucky , my neurologist as soon as he looked at me he said GBS but had to runn a zillion tests to rule everything else out, but he began treating me for GBS right then. I hallucinated for 3 weeks, in high defination! Actually I remember more of the crazy stuff than the reality. Just keep reading and educating yourself and try and share with your doctor as often as you can.
Prayers are sent your way.
AnonymousFebruary 8, 2007 at 7:00 pm
So glad you found this site. You’ll find so much good information and support here.
Pain – I do know what you mean about this. I’m post GBS 3 yrs now, and when I started the disease, I had the worst pain I’d ever experienced. I was begging for drugs to stop it, and I’m normally a fairly pain-tolerant person.
YOu may have to try several things before you find the right one to stop the pain, but it can be stopped.
AnonymousFebruary 9, 2007 at 9:17 am
Thray, where are you in recovery now? I know that you said that you were in CCU for 4 wks and then inpatient rehab for 4 wks, but what about on the “outside”? How’s that going? I am truly interested in your recovery, but also trying to figure out what is going to happen to me. Honestly, I am having so much nerve pain and the neuro did test for SLE (Lupus) on Monday. I have done some reading and in some ways that may be appropriate. It doesn’t explain the weakness though. I am so confused. I give up!… on trying to figure it out… not on staying positive and getting better… that I don’t give up on… I am going to get better and I am somehow going to get through this like you have all done. Thanks for the support.
AnonymousFebruary 9, 2007 at 12:48 pm
I am taking an increasing dose of Neurontin and Opana (a new version of Oxicontin) to try to control the pain. I am hanging on, but it is still barely tolerable. Can you tell me what worked for you? I know that we are all different. I may ask for a referral to a pain mgmt doc if this doesn’t help some soon.
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