Worried and scared

[Candyman75]

Hey guys, I'm not wanting a diagnosis but I need advise. Last year I was hospitalized for what presented as proximal neuropathy and autonomic neuropathy. I dealt with it the best I can. I had to start using a wheelchair because of the pain and weakness in both legs. I went to bed the same way the Friday after Valentine's day and I woke up to not feeling my legs or being able to use them which is why I ended up in the hospital. I am a type one diabetic since diagnosis in 2004. But this past Monday I returned to the dr for a check up and I was asked if there was any new symptoms to which I told my doctor that my left eye lid twitches and my left shoulder twitches alot. Both hands draw up alot and my left leg below my knee feels like it's cramping but it's not that I can tell. It just has the sensation of cramps. Last year my doctor put me on gabapetine and percocet plus kaydian for pain. I take 900 mg three times daily of gabapetine and 10.325 mg as needed of percocet and kaydian twice daily. Last Monday I was unofficially diagnosed with lou Gehrig's disease. My doctor informed me and my wife that we need to learn about the disease and to become fimilar of it. I'm scared guys. As I know anyone with this is. And please know that my prayers are with you daily. But can anyone help possible ease my mind.. Thank you in advance and GOD bless you..

Tony. Aka candyman75

 

[Candyman75]

I am 41 years of age..

Tony. Aka candyman75

 

[Nikki J]

Hi Tony. I am very sorry you are joining us. I am confused when you say unofficially diagnosed? What do you mean ? Is this pending more tests? Or a second opinion? What kind of doctor did you see? If it was not a neuromuscular specialist you should see one. Have you had a recent Mri? Was the diagnosis made after an EMG? Sorry to hit you with these questions but knowing where things stand will allow us to give better advice

 

[swalker]

Sorry to welcome you here Tony.

I sincerely hope you are in the wrong place Nikki offers great advice. I encourage everyone to get a second or third opinion.

If you belong here, there is no better group of people to hang out with.

Welcome!

Steve

 

[lgelb]

That is a large dose of gabapentin, Tony, that can cause its own problems, and I'm not sure what "kaydian" is? I certainly would seek a second opinion at a neuromuscular center of excellence, where you also might end up visiting from time to time to get equipment and advice. Vanderbilt looks like the closest to you.

Best,
Laurie

 

[Candyman75]

Hey again guys, nikki, I have been treated by a neurologist and neurosurgeon since being admitted in skyline in Nashville last year. With a combined effort to treat my symptoms it was actually my endocrinologist was the one who diagnosed me unofficially. I'm actually being evaluated by two neurologist at the moment. The report she received from Dr shuklia was that my symptoms presented as AlS but recent MRI showed two liasions on my frontal lobe and two on my thoracic spine. But there was not enough evidence to diagnose me with MS. So my endocrinologist said that if in fact it is neuropathy it is the worse case any of them have witnessed. Those were her exact words. So she is currently trying to get me into a specialist that treats AlS. As for the gabapetine it is stealing me body but without it I can't use my legs at all. I'm severly limited to using my legs plus I have a torn rotor cuff and slap tear in my left shoulder. So with therapy I can do alot more but it has caused the shoulder injury. Survey on that is pending. But guys I'm going crazy and my wife is going crazy. I agree with you about the unofficial diagnosis. But Dr Hayes said we need to prepare for what ever does or is found. But my wife and I are afraid because I have all the symptoms of AlS. But how much is caused by the gabapetine remains s mystery. As for kaydia it is similar to morphine without some of the side affects. But I sure appreciate your prompt response and please know that your all in my prayers. GOD bless you all.