Status, new guy billy D

[billyd]

Well I didn't get to my emg apointment outpatient. My legs gave out at work due to extreme cramping so ended up in ER. On admission had no patellar reflex's or any in feet. For 4 days had every test the hospital could give, MRI's of brain, spine etc. Lumbar puncture with resultant cranial headache that required a blood patch, many blood tests etc. etc. Was transferred to U of Penn for two days for emg and other tests. First diagnosis was GB syndrome but spinal was negative.

Believe it or not was discharged with neuropathy of unknown origin. EMG was normal in three extremeties which is hard for me to believe due to the fasiculations I have in calves and upper arms, not constant but intermittant. My legs feel like I have walked 10 miles all the time with intermittant cramps. Lost 5 lbs in hospital. Have been banged on and bent around I think by every neurology resident at Penn. Can't sleep at night with or without zanax for more than 2 hours at a time.

Anyway this is my update and I am worse than ever (at least mentally) I have scheduled a follow up in December with a neuromuscular guy at U of P. I am feeling like I will never experience "normal" again. Thanks for listening and any replies are appreciated.

 

[crystalkk]

Hi billy,

Who are you going to see at the u of penn.
Did dr. daboo the the emg at the u of penn.
No lower leg reflexes is a better sign of something more treatable than brisk reflexes.
Hang in there, their is alot of support on this forum.

 

[billyd]

u of penn

Dr. Feinberg is the appointment at U of Penn:|

 

[myooshka]

Billy don't give up hope. My husband, also named Billy worked this as guy that sounds similiar to what happened to you. He was fine all of the suuden his legs gave out, within days he was on a ventilator because his upperbody and breathing was so weak. THey tested for guiliane barre sp? everything, nothing showed up. They had actually prepared him and his family for the worst. Within a few weeks started to get better and completely recovered and to this day they never new what it was that made him sick but now he is 100 percent, don't give up hope you may recover from this. Just curious did you have any shots, vaccines or sickness preceding your illness?

 

[Icanmanz]

Hi Billy! Sorry to hear about your problems. Pray to God there is a solution out there. As long as you have faith in God that is all that matters. My husband has had serious problems with Neuropathy due to being diabetic. He has a lot of problems getting around. He falls constantly. His legs, hands, and arms have atrophied as if he had Als, but he does not have it. Hehas had rhis problem for a number of years. When his doc diagnosed'ed his Neuropathy he put him on disability right away. Am praying your problem will be solved soon, and God bless!

Irma

 

[CindyM]

I know this is gonna sound counter-intuitive, but it actually helped when the ALS clinic said I will not get better and should prepare myself for getting worse. Why? Because it allowed me to stop wishing for something that may not happen (for me. At least) and it made me realize I should be grateful for what abilities I still have. My hope is that I stay the same as I am right now.

:-D If the Docs are wrong and I get totally better, it will be champagne toasts all around!

 

[myooshka]

Just never hear of a lack of reflexes being a sign of als. I see what you are saying about knowing what you have and miving forward, I am dealing with being diagnosed and totally get what you are saying.

 

[billyd]

It is really a strange thing, the part about the absent reflexes, the doctors report reads, "Romberg negative, reflexes 1/4 in the upper extremeties, biceps and triceps levels were symmetric and absent at the knee level and ankle jerk, toes are silent" Even though GB was suspected and treatment considered the spinal was negative. Some of the tests are still pending but most have been within normal parameters. I wish they had revealed something. Meanwhile the twitching and cramping are the constant reminders that there is something wrong. Thank you all for your replies!