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cdc1

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Hi,

Here's my story. Thanks in advance for reading. I am a 36 year old male who has always experienced excellent health. However, late August of 2007 early September 2007 I started to experience pins and needles in my right hand and right foot. Also had some preceived weakness there as well. In early July I began a rigorous workout program which included lots of running outside. I have been jogging on & off for 15 years but it's usually been on a treadmill. I figured the pins and needles were just a result of the pounding my body was taking from the pavement. Did some research and became obsessed with ALS. Anyway, I will try and keep this short. By mid September I saw my doctor doctor told him my fears and he said most likely a pinched nerve. He said if you want peace of mind I can send you to a Neurologist. I agreed. By this time I am experiencing lots of goofy symptoms. I had everything from the hair on the face senstation, itching, my legs were constantly feeling really warm, I had other sensations such as feeling the blood flowing in my legs, eye twicting and muscle twitches. Became fatigued easily. I had some headaches, backaches. I kinda really sluggish, kind of like I was just getting over the flu but no congestion symptoms. Saw the neuro and he says it sounds like a virus. He conducted a thorough clinical exam which I passed. He says no ALS, and no MS. He also requested a MRI of the brain and c-spine with contrast just to be safe. I now became convinced I had MS MRI was compeletly normal excpet for protuding discs in my neck. After the MRI results I felt much better about not having MS. Also, various blood tests for Lyme's, thyroid etc. were normal. By late October most of the weird symptoms disappeard. However, I was left with muscle twitches which are wipespread. Also, I began having an internal tremor/internal buzzing/internal shaking feeling. The buzzing and vibrating is mostly in my legs. The internal shaking and tremors I feel in my arms. Sometimes it feels as if my whole body is slightly trembling. I saw the Neuro again in December and he says I am healthy. Another normal clinical exam and he also checked out my muscle for wasting and atrophy. I had another appt with him in February and he gave me another clincial exam which was normal. I expressed my fear of ALS and he said that he would conduct an EMG just to put my mind at ease. Feb 2008, normal EMG. He says "you don't have it". He's says your not even on the radar.My Neurologist has great credentials too. His fellowship was at an ALS clinic where 300 patients were treated. He is board certified in electrodiagnostic medicine.For the last 3 months I have been trying to put this issue to rest. I have been lifting weights without any problems. I have no weakness. I do, however, have some preceived weakness in my left arm and hand. I continue to have the buzzing and tremors stuff. Sorry for rambling. I can't get this fear out of my head. My grandfather died of ALS in 1960, so this makes me extra anxious. Although, my Neurologist said it has to be a first degree relative. Okay what do you veterans think? I am familiar with the BFS thing. My doctor didn't really say I had BFS. He basically said there is nothing he could find wrong. He suggested I get healthy and this just may be the new me.

Thanks for listening.

CDC
 

cdc1

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A couple more things. I am also getting a weird feeling in my right quadricep muscle. It's almost like a tightening feeling of the muscle. It comes and goes. I also feel a pain in my left bicep and a sorness feeling in my left thenar muscle. These pains/feelings are not constant. I also seem to experience more visible twitching in my left arm.
 

wright

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Hey cdc1

It sounds like you have a great neuro. He did all of the right things and he cleared you. I know how hard it is to let go when it comes to thinking you have such a grave illness . . . BUT . . . you have been given a clean bill of health. Can your neuro or anyone else on the planet say you will never get ALS or any other disease? No, but I think you should feel good about what you have been told and try to do your best to accept it. It sounds like all you're really worried about is the twitching and twitching can happen for many, many, many, many (did I say many?) reasons. Take care and let us know if you have any other questions.
 

patricia1

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Get a second opinion and a third if you are not getting answers. Sometimes things have to progeress before the neuro can get a bigger pictures
The vibrations and trembling is how I started and calf pain then I got the slurred speech a year later. Pat1
 

hardy42

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Well patricia1, I have no doubt that you just completely freaked-out cdc1. Just because your symptoms started with tremors and vibrations doesn't mean a darn thing to the condition of cdc1. If there is anything I hate more, it's when someone on here says, "That's how my symptoms started." Who cares! I'm sure tremors and vibrations can happen for about a billion other reasons too, most of which I bet are not life-threatening.

Next time when someone wants someone else to get a second opinion, leave it at that. I hope this doesn't start another controversy on here, but there is just no need to scare people like that and that kind of talk does scare people.

Listen cdc1, it sounds like you have a really good neuro and it has to make you feel good that he was trained at an ALS clinic. He is going to know better than most that you are in the clear. As Wright said, no one can tell you that you will never get ALS, but as of right now, you are "not on the radar" as your neuro said. I'm no expert, but it sure sounds like you have a bunch of sensory symptoms that I don't think have a thing to do with ALS. Stay on the forum and I'm sure you will learn more. Try to stay calm and don't self-diagnose yourself.
 

cdc1

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Thanks Hardy and Wright.

I feel very confident with my Neurologist. When I asked him about his credentials he kind of had this look like "you have no idea how qualified I am".

Anyway, like I said earlier I've been working out and gaining strength and muscle mass. From what my neurologist said that could not happen with als. Also, this has been going on for 9 months now with no progression. With all the normal testing I've had wouldn't this put me in the clear. I competely understand the whole you can never say never thing.

You mention sensory symptoms. So, the buzzing/vibrating symptoms are considered sensory?

Oh, and Patricia you kind of did freak me out.

CDC
 

kevinw

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One thing I can say is that I had minor "buzzing/vibrating" feeling before my lumbar puncture. Then during the prodecure the doctor must have hit some kind of nerve because my leg started shaking & vibrating. Then as procedure went on it kind of faded away to a minor "electrical" felling in my left leg. So I am convinced that what ever the "buzzing/vibrating" feeling is, it must have something to do with the nerves ending down the spine. Long story short, I still get that buzzing feeling (my diagnosed is PLS at this point).

Take care.
 

anneinma

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Watching my husband lose 50 pounds of mass muscle I don't think you could gain that with ALS. Generally speaking (not always) there is no physical pain with ALS. Good luck.
 

cdc1

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What is the rule of thumb on time? As I understood from my neuro and research that 9 months from initial symptoms and no clinical weakness is a good sign. Not to mention all clean test and clinicals.
 

kevinw

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I still can not grasp the concept of having a motor neuron disease that causes muscle stiffness and pulling those muscles not causing pain. I am not saying that the disease itself causes pain, but how can the early stages not cause pain and discomfort? There again my diagnosed is PLS where I've read pain can be a symptom (especially after a full days work), but I just feel we put too much focus on pain and motor neuron disease. I mean a baseball pitcher that has not warmed up properly and his muscles are still "stiff" is going to have "pain" after he over does it and pulls those muscles.

Just my opinion that we can not eliminate MND when there is pain present.

Bless everyone and try to make the best of this Memorial Day for those fighting for liberty.
 

wright

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I don't think anyone disputes the fact that there is muscle and joint pain with motor neuron disease. Cramping, spasms, joint stiffness etc. will most certainly cause pain and this is definitely recognized.

The pain that is not associated with motor neuron disease is neuropathic pain, although there are exceptions, but they are rare. There was a study just published from a group from Emory University not too long ago that addressed that and other sensory symptoms with ALS. If there are sensory symptoms, they typically (70% of the time) occur in a "stocking / glove" manner (i.e. the hands or feet) and the other 30% of the time, occur in a single limb and is very focal. Again, they are not common, which is why it is generally accepted in the medical community that sensory symptoms are absent with ALS.

P.S. to cdc1: If you're building muscle and getting stronger, that is certainly another sign your neuro is correct. As for the buzzing, there are a multitude of reasons you can have those feelings, most of which are completely benign.
 

patricia1

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Hardy
You are out of order He asked and I answered .
If people are on this forum they will get freaked out Its a very scary place to be and at the same time very informative. I said I had the same symptoms and he should get a second opinion.
If you think you dont have als get off the forum and live your life.

Like I said many times.
More than half the people on this forum. Think! they have ALS. They need to get lives. Its a cruel horible disease I live with for 10 years/

Hardy lighten Up!
 

patricia1

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Well patricia1, I have no doubt that you just completely freaked-out cdc1. Just because your symptoms started with tremors and vibrations doesn't mean a darn thing to the condition of cdc1. If there is anything I hate more, it's when someone on here says, "That's how my symptoms started." Who cares! I'm sure tremors and vibrations can happen for about a billion other reasons too, most of which I bet are not life-threatening.

Next time when someone wants someone else to get a second opinion, leave it at that. I hope this doesn't start another controversy on here, but there is just no need to scare people like that and that kind of talk does scare people.

Listen cdc1, it sounds like you have a really good neuro and it has to make you feel good that he was trained at an ALS clinic. He is going to know better than most that you are in the clear. As Wright said, no one can tell you that you will never get ALS, but as of right now, you are "not on the radar" as your neuro said. I'm no expert, but it sure sounds like you have a bunch of sensory symptoms that I don't think have a thing to do with ALS. Stay on the forum and I'm sure you will learn more. Try to stay calm and don't self-diagnose yourself.

I read you profile and you said you here to learn about ALS .Then why do you have so much to say. I would love you to walk in my shoes for one day. That will shut you up!
 

hardy42

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May I ask why he needs a second opinion? He already got one from a neuro who has seen him a number of times and even did an EMG and the neuro was trained at an ALS clinic.
 

patricia1

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To give him peace of mind. He is still not convinced.
I saw 5 neuros before I received a Dx ad my MRI and 2 of my EMGs were normal and all my blood test are normal a a spinal tap is neg THats why! Its very hard to DX. if the symptoms are at the begining stages. I dont think he has ALS but f it troubling him he should get a second third forth As we all should Docs.make mistakes
AskCapT Al.
 
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