scared and don’t know what to do
scared and don’t know what to do
AnonymousJanuary 11, 2011 at 3:58 pm
I’m a GBS survivor…I’ve been having a flareup. It’s progressing fast! my doctor doesn’t know what to do next. The neurology dept that originally diagnosed me in 2003(once I had full facial paralysis)says there’s “nothing more they can do.” When I responded “what was DONE to help me? I appreciate all the tests, however I am going numb fast and somethings wrong!” The neurologist again responded, “There’s nothing more we can do at this time.” I said “That’s nice! Thank you.” The other neurologist who did my last EMG (1st time meeting him)did not finish EMG. He said it was in my head, I’m not numb if I can move, it’s lack of exercise and it’s “DEFINITELY NOT GBS!” I came to my defense with: You don’t know me, The best neurologist who did is now retired, I walked a minimum of 3 miles per day for the past couple years and have had a Golds Gym membership which i used 5 days a week until recently because I can barely walk, I was diagnosed in this clinic in 2003 because after over 3 weeks of people just like you, ignoring me, I was fully paralyzed and almost dead!!!! When he said it wasn’t GBS again…I wanted to know if he had any ideas of what it could be or if I was misdiagnosed, he should lend me his opinion! He said there is NOTHING wrong with me!! I then asked if he knew my name(he couldn’t remember) Then I firmly told him that he obviously never read ANY of my records/medical history and he had the worst bedside manner I had ever dealt with…he stormed out of the room and I left and called my doctor from parking lot crying! my doc wants me to report him! My doctor is wondering if I should go to PA? He said our options have run out and he doesn’t want me to get worse! PLEASE HELP!! I can’t hardly function…
AnonymousJanuary 11, 2011 at 4:35 pm
You need to be seen by another neurologist quick and get some treatment ASAP. Maybe your GBS morphed into CIDP. The MD needs to do an Nerve conduction study/EMG and maybe an LP on you. I know what it feels to be almost paralyzed and numb & to be unable to walk. I’ve been there. Do you have good medical insurance?
AnonymousJanuary 11, 2011 at 5:04 pm
A few suggestions:
1) If you are truly scared & your symptoms are progressing quickly then go to a local ER & tell them you have had GBS & are experiencing the same symptoms.
2) Are you near a Mayo clinic?
3) Are you near one of the GBS Centers of Excellence?
There is a list of them here:
I don’t know what else to tell you. I’m sorry you are having to deal with dr’s that are idiots.
AnonymousJanuary 11, 2011 at 6:06 pm
My best advice is to stick to your guns. Dig those heels in and don’t back down for a second.
If you don’t feel like yourself, make sure everyone knows it and repeat it time and time again until people start listening to you.
The very same thing happened to me this time last year. My body really went into a tailspin after a terrible regression from GBS and I was essentially sent to a nursing home to die.
I couldn’t stand up for months and couldn’t open a carton of milk without a fork to pry it open. Couldn’t even pick up a 1 pound dumb bell over my head.
Everyone told me, including my neurologist, that I just had a “bad case of GBS” and there was nothing they could do.
I wouldn’t accept that. I told all of them they were dead wrong.
As it turned out, after 5 weeks of constant bitching, I finally had another spinal tap and my protein count was sky high (about 190).
The spinal tap confirmed that I had CIDP – not a “bad case of GBS” like everyone told me for weeks and weeks.
My neurologist ordered seven plasmapheresis treatments over a 14 day span and prescribed Cellcept, which according to him takes six months to kick in. I was then told to have six more plasmapheresis treatments over six months (for a total of thirteen).
That did it for me. I emerged from my death bed in Feb of 2010 to full recovery from CIDP in about 5-6 months.
Nobody knows how your body feels better than you do so it is imperative that you be your biggest advocate. It is possible your condition has morphed into CIDP.
My best to you during this rough time.
AnonymousJanuary 11, 2011 at 11:28 pm
It is possible that your previous GBS has turned into CIDP, but normally there wouldn’t be 7 years in between. There are a small percentage of people, like 5%, who do get GBS again after they are well. Either way, you need treatment ASAP, starting with IVIG infusions. Your doctors sound like uncaring idiots, & I hope you get to another medical facility & get correctly dx & treated. Would they treat their wives/children/parents the way they treated you? I think not!
AnonymousJanuary 12, 2011 at 12:03 pm
Melissa, I have CIDP and it’s not fun. My condition was suspected by a neurosurgeon who examined me for a totally different problem. I was going numb and/or paralyzed from my waist down in both legs – so much so I could stick my legs with a pin and did not feel it. I told my PCP about it 7 years ago and he blew it off as nothing. I am not a doctor so I clouded the issue by self diagnosing my problem because no doctor would listen. Finally, after almost falling down like a common drunk while walking to a Broadway show in NYC I had enough. I went to my cardiologist and told him about my 7 year condition. I told him I thought I had PAD (peripheral artery disease). He had extensive testing done and we ruled that out. He suggested it could be neurological and sent me to a neurosurgeon and he suspected I had several things going on and he sent me to a neurologist. Simultaneously, the cardiologist also sent me to a rheumatologist. Simply put, enough is enough and I was not going to take NO for an answer. I wanted to know what I had. The doctors realized I was very serious about this when I started using and questioning them in their own language. After all the test (things like lumbar melograms – which I enjoyed so much I passed out !). We all finally came to a conclusion. I had spinal stenosis, including lumbar stenosis which causes bi-lateral pinching on my sciatica nerves which caused the numbness and paralyses. Stenosis alone can put one down. However, the neurologist did a EMG on me which proved I had CIDP too. A second opinion with a different neurologist confirmed I have CIDP. I then changed PCP’s and found a wonderful one with the help of my cardiologist. I thought why do I want to go to a doctor who won’t listen, especially after being diagnosed with a serious disease. The point of this diatribe is you too have to say enough is enough. You are responsible for your own health. DO NOT LET THE DOCTOR BE YOUR DADDY – YOU TAKE CHARGE AND DON’T TAKE NO FOR AN ANSWER. Melissa, if you tell us where you live I’m sure some other posters could give you names of “GOOD” doctors in your area. You need a second opinion and you need it fast. Just because you had GBS before doesn’t mean you have it now. You may have some other disease which manifests itself as GBS and it may be a totally different disease. Good Luck and keep us posted on your progress.
January 12, 2011 at 10:59 pm
MY husband developed a variant of GBS in January 2010 (affected small fibre nerves only.) He was told it was in his head just like you . NO one would take him seriously.
We had to leave Canada and go to Columbia Medical Cn NYC. If you can get there Dr. Rajeev Motiwala is excellent. He diagnosed Robert and he had IVIG in 3 days after he arrived in NYC. It was expensive but praise the Lord we went.
Kathy from Ottawa, Canada.
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