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Tim C

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Joined
Apr 5, 2009
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16
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Learn about ALS
Country
US
State
NY
City
NYC
Hi I'm new here. My name is Tim and I'm from NYC. I'm a heretofore youthful and energetic 60 yo man. I do have and have had essential tremors for years in my left hand. I also crack my neck and lot and usually have neck pain and stiffness. The cracking also makes my face and fingers go a little numb. I only have minor wearing away of some vertebrae in my spine.

My story: For the last year or so I have been a bit more fatigued than usual though when I am in front of my students I have enormous energy. Well about two months ago I had a cold virus of sorts. It was strange as it did not feel like a normal cold as I woke up wet/clammy in the middle of the night and it never really progressed to a chest cold which is what I usually get. Well I stayed home from work for a week and went I went back out I felt weak in my legs. Not unusual. I got sick again and stayed home for another five days, went out again and felt weak in my legs. My left leg also buckled in my apt but not in the street. Finally after three weeks, the cold left. The leg weakness subsided but I still felt fatigued. Two week later, I tried to pat my cat in bed while laying on my side and I could not lift my arm. Just overnight this happened - that profound weakness. Then the legs' weakness came back. I still managed to play tennis and get around easily. The strength in my arm came back. Last week I felt a little weak after tennis. That was Thurs. Since then, I have gotten much worse. My arm and leg on my left side are somewhat weak. I feel weak all over actually. My forearms get tired and tight (a bit like tendinitis) when I type. No muscle cramps and no muscle tremors to date. I have totally lost my interest in food. The smell of it makes me sick. I am obsessed with the idea that I might have ALS. My PCP did a blood workup and it was "normal". I tested neg for mono and Lyme and HIV. I have an appt with a neorologist on Tues (today is Sunday). Does this sound like ALS?
 
I can assure you that you do not have ALS.

I would recommend seeing your doctor and get a full round of tests done.

But rest easy as what you describe is not ALS.
 
Thank you so much I will keep you posted.
 
Hi Tim,
Since you are going to your doctor on Tuesday, it would be worth mentioning Guillain Barre Disease. I attended a CIDP/Guillain Barre conference last Spring. It used to be called ascending paralysis. Your symptoms have a lot in common with what was described at the conference. It is an auto immune illness that often follows some sort of infection. Here is a little description.

"Guillain-Barré syndrome is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances the weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until certain muscles cannot be used at all and, when severe, the patient is almost totally paralyzed. In these cases the disorder is life threatening - potentially interfering with breathing and, at times, with blood pressure or heart rate - and is considered a medical emergency. Such a patient is often put on a respirator to assist with breathing and is watched closely for problems such as an abnormal heart beat, infections, blood clots, and high or low blood pressure. Most patients, however, recover from even the most severe cases of Guillain-Barré syndrome, although some continue to have a certain degree of weakness.

Guillain-Barré syndrome can affect anybody. It can strike at any age and both sexes are equally prone to the disorder. The syndrome is rare, however, afflicting only about one person in 100,000. Usually Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally surgery or vaccinations will trigger the syndrome.

After the first clinical manifestations of the disease, the symptoms can progress over the course of hours, days, or weeks. Most people reach the stage of greatest weakness within the first 2 weeks after symptoms appear, and by the third week of the illness 90 percent of all patients are at their weakest."

From what I heard at the conference, GBS can strike with different severeness. Some people had the symptoms akin to yours and others wound up paralyzed and on respirators. It would be something to toss out to your GP. At the conference they noted that most GP's have limited experience with the illness so it would be worth while for you to do some reading about it and if it fits at all to print some info. and take it into your doctor to discuss.
Laurel
 
Thnx Laurel. This is getting weird. The weakness is getting worse. I am starting to feel a little pain in my thighs when I walk and especially when I climb the five flights to my apt. I also seem to be getting weakness on the other side of my body now. Also intermittent inability of hold my head up easily. This is all happening so fast. I had problems just getting the referral from my PCP who, it turns out, is a bit of an idiot. I see the Neurologist tomorrow.
I'm guess I'll get an MRI and exam and then maybe the EMG. I heard they hurt like hell. Speaking of hell, I barely got through teaching my two early classes today. Last month I was fine and now.... Nice to know I'm not alone in this - whatever this is.
 
Tim,
If it gets any worse before you see the neurologist tomorrow, go to an emergency room. It would be good to write out in point form what has gone on for the last while and have that at hand in case you need to go to the emergency room. It worries me your comments about inability to hold your head up easily. If in doubt at all please to the emergency room. Let us know how you are. Hubby says his EMG's were more annoying than painful, and he isn't macho at all.
Laurel
 
Tim,

Echoing what Laurel said, don't be afraid to pop into the emergency room, especially if things are progressing so rapidly. Best of luck at the neuro tomorrow.

I have had two EMG's to date and they are more uncomfortable than painful. The doctor or technician will insert a fine needle into various spots of your body, get you to relax the muscle in question, then may have you contract or move that muscle with assistance. You may feel a little pain or cramp like sensation as they reposition the needle. You may also be sore for a day or two afterwards.

Take care,

Robert
 
Laurel,

Thank you for the advice. Should it get worse, I will go to the ER.


Tim
 
Tim,

Echoing what Laurel said, don't be afraid to pop into the emergency room, especially if things are progressing so rapidly. Best of luck at the neuro tomorrow.

I have had two EMG's to date and they are more uncomfortable than painful. The doctor or technician will insert a fine needle into various spots of your body, get you to relax the muscle in question, then may have you contract or move that muscle with assistance. You may feel a little pain or cramp like sensation as they reposition the needle. You may also be sore for a day or two afterwards.

Take care,

Robert

Robert. Thank you so much. Tim
 
Hi I'm long back from teaching my evening class and ok so to speak. My neck strength is pretty good though still a bit tired but now I'm getting bad cramping in my hands just from holding a phone. I also noticed that after I climbed the hill to my school, when I returned home, my thigh muscles felt as though I had the flu they ached so. Now they're ok. Really strange and changing symptoms. I cannot wait to see this neurologist tomorrow. I'm very curious as to what diagnosis she will come up with. As people here have reassured me it's not ALS, I wonder what it is. If it's GBD or whatever. I'll check back in tomorrow.
 
Hi Tim...I hope your neuro appointment goes well tomorrow, and that all your expectations are meet, and the doctor can tell you what's going on with your body. ( hopefully it's nothing serious !)

I can't think of anything worse than coming out of the doctor visit with out an answer, or a bad one.
 
The app't went well. I had to wait forever and was a puddle of nerves. She did the diagnostic workup, the EMG and the nerve test, and said no ALS. Wants an MRI to rule out MS. And is doing lots of bloodwork. Thinks its being caused by the cold virus I had. I got rid of the cold but this followed. I was very stressed out around this time and probably shot my immune system to shreds. She said she may never find the exact cause or predict how my bod will fight this but I am ready for the fight. Thanks for the support. I'll report back in a week.
 
I think you are just 60 and exercising too much. If that shows to be true it's an easy cure, right? I wish you well.
 
Tim,
That is good news. I was wondering how you made out today. If it is autoimmune that is much better than ALS. Keep us posted please.
Laurel
 
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