At what point should I go to the emergency room?
December 31, 2013 at 8:35 pm
I am still in the limbo land of getting a firm diagnosis. My neuro suspects it but maintains in order to have CIDP I need to have symptoms for at least 6 months, otherwise it’s not chronic. I only have symptoms for about 2 months. My next appointment is end of Jan with another neuro. There is no way to get a sooner appointment in Miami area. I have tried and tired with numerous neuro’s offices and basically I was told to go to the emergency room if necessary, but a sooner appointment? no way.
My symptoms are getting worse by the day. Everyday is noticeably worse than the previous day. I am feeling extremely weak today. Arms and legs feel like noodles and shoes feel like cement. Holding up an iphone tires me out. I can still walk but stairs are getting harder and balance is not good either. Typing this post makes me breathe hard and makes my arms cramp.
My question is, if I go to emergency room today or tomorrow, will I be taken seriously, seeing that I can still walk? Will they just send me right out? Anyone has any experience about this? Please advice. I am really really worried and scared.
December 31, 2013 at 9:55 pm
My insurance will not let me use emergency for cidp the cost is on me then, my neurologist told me the same thing if i get too weak then go to emergency only because he didn’t want admit me into hospital. I have read that symptoms lasting longer then 3 months are a sure sign of cidp I am not sure what would happen if you go to emergency I think a staff neurologist would look you over and get the history then consult your doc. The last time I got plasma exchange I had to get wheeled into hospital and because I waited too long I had to get a extra treatment to get back my balance and strength. Better to bitch now get a treatment started and then worry about what it is called because GBS and CIDP use the same treatments.
December 31, 2013 at 10:54 pm
I made the mistake of NOT going into ER when I came down with GBS/CIDP. I had more nerve damage as a result of waiting. My recommendation would be to go to the ER, tell them about your symptoms, and that you suspect a GBS attack. Request treatment on an urgent basis to stop the progression of nerve damage.
What a hell of a way to have to spend New Year. I wish you better health in 2014 and please keep us updated as best you can.
January 1, 2014 at 3:42 am
If your weakness is increasing daily then I would go to the ER. Even if you have to drive a little further, go to one with a reputable neurologist affiliated with the hospital. Most likely the hospital would call him in if GBS is suspected.
January 7, 2014 at 3:20 pm
Just want to give everyone an update:
Went to ER. The doctor tested me and insisted the weakness was more muscular than nerves, despite me telling her again and again and again I had burning nerve pain, numbness, prickling and involuntary muscle twitches, all signs of nerve involvement. She sent me for yet another blood test and of course it came back normal. Shen then sent me back home saying I am just fine and dandy.
So frustrated!! I want to tear my hair out! Except I can’t even do that …
I still can walk but my feet feel so heavy and I am worried that I will develop feet drop soon. My hands are so weak and shaky, typing is hard and my iphone feels like a ton.
January 7, 2014 at 4:42 pm
A blood test is not how acquired peripheral neuropathies are diagnosed. The indicators are presentation symptoms, nerve conduction test results, and spinal fluid results. If the weakness is progressing and has reached the point where you are having difficulty standing, that is sufficient for a neurologist to put you in the hospital.
January 7, 2014 at 4:54 pm
I take it you still have not had a follow-up spinal fluid test. It may be that you will have to wait until the end of January, when a new neurologist should order it. Whether the proper time to wait for a follow-up test is one month or four months depends on how rapidly the weakness is progressing. This can vary greatly. If you are having trouble standing before you are able to see the second neurologist, you should go to the emergency room again. There may be a different neurologist on call which might make a difference.
January 7, 2014 at 4:58 pm
By the way, what do you mean the ER doctor tested you? Was she a neurologist? What tests were done? Was a knee reflex test done? Was it normal? How about elbow reflexes? Was a nerve conduction test done? What was the basis for the doctor ruling out nerves?
January 7, 2014 at 5:56 pm
GH, nope, still no follow up spinal tab, or NCS or EMG!
She is a neurologist. Her reason for muscular disease is that my weakness is more apparent in large proximal muscles than distal. I tried to tell her CIDP is like that but of course she wouldn’t listen to me. I told her my numerous nerve symptoms and she wouldn’t hear of them either. She asked me to walk, tested my limbs’ strength, tested my reflexes (still there), did a blood test. Nothing else. I spent a whole night waiting and nothing useful came out of it in the end.
I still can walk but at this rate I don’t think I will be able to for very long. And I may need to go to ER again if it comes to that.
January 7, 2014 at 10:15 pm
Perhaps it isn’t CIDP, but there is considerable variation from one case to the next. You shouldn’t fixate on one diagnosis from your own research, but should leave diagnosis to a neurologist. The information you can find online enables you to ask informed questions, but not to make the diagnosis. On the other hand, the neurologist should keep an open mind until the diagnosis is certain. I don’t think CIDP can be ruled out based only on the proximal/distal criterion. Here is what Parry and Steinberg have to say on that point:
“The most prominent clinical feature of CIDP is weakness. It affect both proximal (closer to the body) and distal (farther away from the body) muscles early, but as the disease progresses, the distal muscle involvement becomes more noticeable.”
You might want to get a copy of Parry and Steinberg to study while you are waiting for your January appointment. You should also arrange for someone to assist you, if necessary. Do you live alone?
January 8, 2014 at 12:32 am
GSLM, I’m glad to hear you were able to make it to the ER. Too bad they did not provide a conclusive diagnosis.
What hospital ER did you go to? I know of only two Miami hospitals that have experienced GBS/CIDP neurologists on staff. See my earlier posts in this thread: http://www.gbs-cidp.org/topic/cidp-doctor-in-miami
Mount Sinai has two ER’s and the one at 4300 Alton Road is where their Neuroscience Center of Excellence is. They have GBS/CIDP specialists on staff there. If you need to go back into an ER before you see your doctor, maybe this is the better one.
January 8, 2014 at 5:28 pm
GH and Jim-La, thank you for your guidance.
GH, I am lucky to have supportive family. But they can’t do much to help either. It’s in the hands of the doctors.
Jim-LA, unfortunately I didn’t go to either Mount Sinai or UM. I didn’t realize Mount Sinai is a Center of Excellence? Will try one of them next time.
January 8, 2014 at 5:41 pm
Gsim, by “help” I mean merely getting you to the doctor or the ER, when necessary. By the time I got in to see a neurologist, I was using a wheelchair and had to make arrangements to use a transport service for the disabled.
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