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-   -   Feeling near death-?CIDP (https://www.neurotalk.org/peripheral-neuropathy/205400-feeling-near-death-cidp.html)

Wolbachc 06-08-2014 07:55 PM

Feeling near death-?CIDP
 
I feel so weak I can barely get out of bed. I told my work that I need a leave of absence which will begin in 1 week because I can barely walk due to leg weakness and fatigue. In the process of having my peripheral neuropathy worked up. Had my 2nd nerve conduction study on Thursday. I got a copy of the reading, but no interpretation. The neurology group I see moves at a snails pace. Months to get in, see a nurse practitioner who orders preliminary tests and sets up an appt. with neurologist in 3 months. Saw him and he ordered more nerve conduction studies and said see you in 3 months. I'll be dead at this rate. I called the office on Friday and left a message saying I needed to speak with the neurologist regarding my results. No call back from anyone. I did make an appt. in New York with Dr. Latov for about 1 week from now. I suspect I have CIDP based on my symptoms and the nerve conduction study numbers. I am not a neurologist but that is my best guess. If I am correct the sooner I start treatment i.e. steroids, Immunoglobulin infusions, the better the prognosis. If I get no help from the local neurology group, I will definitely go anywhere I can get treated quicker although this would be so hard since New York is about 1.5 to 2 hours away. Any suggestions would be appreciated. Thanks for listening

mrsD 06-08-2014 10:30 PM

This sounds like an emergency situation .
Do you feel weakness with your breathing
At all?

There is a form of neuropathy called GBS
Where weakness starts in the legs and moves up the body and will affect breathing and swallowing.
Also myasthenia gravis causes muscle weakness
that is difficult to diagnose.

I hope you have someone living with you to
Help you should you need to go to the ER
or call 911.

If this continues or worsens at all I'd call
911.


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