Newly Diagnosed in January

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.

JayDee

Elizabeth,
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!!

Hi Elizabeth,

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.

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.

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

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

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.

lizeb,

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.

Best wishes,

Suzanne

Yea!!! My mother had her trach tube removed today as she is now breathing well enough on her own to be off the ventilator. She even gave a few ‘thumbs up” signs when dad was there. Seems things are looking up!

That is wonderful news Zoo. congrats.

Jerimy