What Is Going On With Me?
AnonymousJune 22, 2013 at 9:46 pm
Hello. My name is Marty and I am 50 years-old. I am looking for clarity on my condition. Four weeks ago I woke up experiencing, to the best I can recall, the following symptoms:
Numbness in my hands, feet & lips
Inability to control my limbs
Poor balance–sneezed while watering our garden and fell face-down in the mud–admittedly, there have been some funny moments in all of this
Pain in my left shoulder and eye sockets
Cramping in various places in my legs
Numbness/lack of sensation everywhere
Enormous eyes–my contacts would pop out
So much fatigue that all I could do was lay around moaning and looking for sympathy, which happily I received plenty of
I had recently gotten over a strong sinus infection that I decided to let run its course without antibiotics.
2 ER visits
“Here, pee in this cup.”
EMR with my neurologist
Lots of chat time with our family doc
Steroid injection–2 hrs sleep over 3 days–hit a huge wall after it wore off, but was able to read a wonderful novel while up during those nights
Lots of theories, but no diagnosis
Overall, balance and numbness has improved slightly. Am able to walk now without the use of a cane. I wake daily with fairly normal vision but begin to see double within an hour or two each day which lasts until the next morning. I am toast with fatigue by @ 1:00 PM every day. I am scheduled for a spinal puncture in 5 days.
Friends and colleagues believe that this condition is stress related. I lead a large organization and usually work extremely long hours each week. Could this be?
Our GP warned against online diagnoses. However, my family and I are desperate to get a handle on this condition. GBS appears spot-on with what I am experiencing.
I am an avid cyclist and not being on the bike in the month of June is crushing my fragile little spirit.
Tired of being tired. Marty
June 23, 2013 at 4:10 am
It can’t be diagnosed online, but you can get useful information which you can discuss wirh your neurologist. The spinal fluid test is an important one which can point to GBS or CIDP. You need to wait for the result of that test. If it is inconclusive, a nerve biopsy is sometimes used to check for CIDP.
Be assured that it is not unusual to have a difficult diagnosis. There is a lot of variation in neurologic disorders.
AnonymousJuly 7, 2013 at 6:20 am
As of the date of your post, June 22nd, you stated these conditions started four weeks ago, which would have been about May 25th. You also stated your GP warned about on line diagnosis. Well, first let’s get your GP’s opinion out of the picture – If he knew anything about GBS, you would not be waiting another 5 days for a spinal tap. Let me make this as clear and understandable as possible for you: You did not mention your reflexes…such as knee jerks. Loss of reflexes are one of the first things that a GBS patient will loose. You did not mention any “pins and needle” sensations in your feet/hands – normally these sensations will appear in GBS patients. BUT, the most important thing at this time is to get a DIAGNOSIS, and if it is GBS, you have just about missed the boat on early treatment to prevent the disease from doing more damage. EARLY DIAGNOSIS, WITH FAST TREATMENT of either plasmapheresis (plasma exchange) or IVIG (IntraVeniousImmunoGloublin) will stop/slow the damage to the myelin sheath…the coating that protects the nerves. It will not repair the damage that has been done, but will usually prevent any additional damage to the nerves – That is why you should not be waiting another 5 days for a spinal tap! AND, if you do have GBS, it is well known that steroids are a useless treatment.
You stated that you had an EMR at your neurologist. EMR is electronic medical records…it helps the neurologist pick systems.
What you probably had was an EMG and a NCV test. These test are as follows:
Electromyography (EMG) is a test that checks the health of the muscles and the nerves that control the muscles.
How the Test is Performed
The health care provider will insert a very thin needle electrode through the skin into the muscle. The electrode on the needle picks up the electrical activity given off by your muscles. This activity appears on a nearby monitor, and may be heard through a speaker. After placement of the electrodes, you may be asked to contract the muscle. For example, bending your arm. The electrical activity seen on the monitor provides information about your muscle’s ability to respond when the nerves to your muscles are stimulated.
Nerve conduction velocity.
Nerve conduction velocity (NCV) is a test to see how fast electrical signals move through a nerve.
How the test is performed
Patches called surface electrodes, similar to those used for the EMG are placed on the skin over nerves at various locations. Each patch gives off a very mild electrical impulse, which stimulates the nerve. The nerve’s resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to determine the speed of the nerve signals.
I am not a doctor, but have researched GBS/CIDP ever day for more than 8 years. AND, in my opinion, you may have CIDP, the chronic type GBS: Chronic Inflammatory Demyelinating Polyneuropathy. I say this because of the length of your onset, more than a few days, one or two weeks, but FOUR WEEKS and more. However, your spinal tap still should have a higher than normal (41) protein level.
Keep us informed. And why don’t you print my link and give it to your GP and neurologist.
July 7, 2013 at 9:47 am
Jethro is correct that with GBS or CIDP, earlier treatment generally leads to a better recovery. It is important to diagnose it or rule it out as soon as is practical.
September 23, 2013 at 3:13 pm
You definitely need a spinal tap (lumbar puncture) to confirm a GBS related diagnosis. Any elevated protein levels will show up in the spinal fluid.
It can take even emergency room doctors a week to figure out what’s wrong with a GBS patient, so if you can talk to a physician with the information laid out by Jethro, you may be able to get a proper diagnosis sooner and get the treatment you need!
Best of luck.
September 23, 2013 at 3:14 pm
Actually, I just noticed how old the original posting is…oops! Hopefully, you have now received help.
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