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philipn413

New member
Joined
Apr 27, 2012
Messages
2
Country
US
State
VA
City
Yorktown
Hello everyone,

I'm 44 yrs old. -- I want to thank everyone here for all of the in depth information they take the time to share.

I've read hundreds of threads here in the past few weeks.
Like so many, I was one who had no idea what ALS even was. Of course as a former high school baseball player, I had heard of Lou Gehrig, but never understood ' what exactly it was ' he passed away from. -- A few months ago, shortly after going to my GP doctor, a family member mentioned that hopefully it was not ALS. When I subsequently looked it up online, I was stunned. For I had every one of those basic symptoms. But what gave me that sinking feeling in the pit of my stomach, was the symptom of sudden crying episodes. I had a few of those in January.

The timeline:

My symptoms started out several months ago in July of 2011 with my left hand feeling weak, then days later, my left arm started feeling very heavy and weak. There was no pain whatsoever, no numbness, just weakness. My coordination in that hand started changing. Then days later, came the muscle twitches in my left arm and my left hand. I likened it to someone popping stove-top popcorn inside my muscles; deep in my muscles. Many times I could see the deep muscle twitching from my under my skin, especially in my hand . -- Nevertheless, I thought is was a pinched nerve and continued on, not worrying myself over it. It eventually went away. But in September of 20011, it started up again, and kept happening up until Christmas.
Then my left leg gave out from under me the day after Christmas. Again, no pain, no numbness. I then had to contend with the left arm, hand and shoulder weakness (and heaviness and twitching) along with my left leg starting up the same thing. My calf muscle started twitching and sometimes felt like it was rolling inside. The outer linear muscles running along the outside near my shin, was doing the same thing.

At this point, I'm thinking "okay, this pinched nerve is kicking my butt".

But the twitching episodes become more and more frequent in my left leg and arm. Then after New Years, my left shoulder started pulling, like my left arm was so heavy, that if it wasn't for the muscle tissue, it would simply fall off. I was walking with a limp and needed a cane to get around. By this time I had scheduled an appointment with my doc for a few weeks later. A few days before my doc appointment, I had my first crying episode.
I mean, I was watching TV, Stephen Colbert ... and simply chuckled at something mildly funny. Then as I reached for my glass of water, I stopped and started crying like someone had just shot my dog. It was uncontrolled for about 15 to 20 seconds, and went away as fast as is started.

I went to my GP, and told him everything that was going on. He ordered an array of blood tests and internal tests under the sun. He gave me a preliminary neuro exam. Then referred me to my neurologist. After 8 vials of blood drawn two separate times, all my tests subsequently came back fine. Perfect cholesterol, blood sugar, white cell count, thyroid was fine, blood pressure (every time they checked was 122 or 3 over 81 or 84 ) was great.
But my GP had those test done in a hurry as well. And on that exam day, he also told me, (after testing my resistance and reflexes) that he suspected it was something
neuromuscular and was referring me. I found it odd that he kept looking at my left shoulder with a concern look. I told my family member about it and that when I heard the mention of ALS.

So when I got home, I googled ALS. That's when my heart stopped and I felt a chill run down my spine.

Then it was going to be several more weeks before I could get in to see my Neurologist.
I have been convincing myself that it is ANYTHING but ALS.
Then the 3 small fingers on my left hand started to sag. In a weird way. And ever since then, my hand and fingers feel like they are swelling, even though they are not.

But 3 weeks ago, I finally saw Neurologist #1.
I basically described my symptoms to him, kept it short, sweet, simple and honest. He spent almost an hour giving me a thorough physical test. The tuning fork was cool.
He didn't talk much. Periodically, he would stop and go write down info in my folder. He spent a lot of time tapping the outside of my left arm with the reflex mallet. He would tap my upper arm, and just stare at it. Wait several seconds then do it again. Later, when he had me open my mouth to check my tongue, this is when he gave a look of concern. Then went and tapped my left arm again. -- Strange.

He went back to my folder to write more things down. He said nothing. So I decided to probe his brain and try a little Jedi mind trick. I said " Because I sleep on my right side a lot, my neck gets kinked up from time to time, that's why I'm thinking it's pinched nerve."

He didn't even look at me and kept on writing. " It's not a pinched nerve."
He wrote more. "Also, it's not a stroke. Stroke comes on quick. I'm gonna order a electrodiagnostic."

So then last week, I went and had my EMG and NCV. It was a different Neurologist who gave the test.
And that doctor might as well have entered the exam room wearing a dark cloak and hood saying in an evil voice " No. You will find that it is YOU that is mistaken, about a great many THINGSssss. " Basically I now know what Luke Skywalker felt like getting zapped by the Emperor.
The test wasn't too bad and took almost an hour.
I asked him as well if I had passed the test. Of course he would not tell me except to say that he must forward the results back to my other Neurologist.

So after several days of waiting, no call. Nothing, yet. -- The symptoms have become more frequent and intense. More crying episodes and extreme fatigue and weekends in those limbs. Even as I typed this out, several hundred tremors occurred in my left hand, arm, shoulder and leg.

I only think about it when the symptoms make me think about it. I try not to worry. But at the same time ..... you know.

God Bless everyone here. :)
 
I know it's stressful. Try to stay calm until you find out for sure. It could be many things. Stay off the search engins.
 
Philip,
People say "I know how you feel"
When really, you're thinking there is no way they could possibly know.

Well, you have come to the right place.
You will find the most caring, understanding and knowledgable people on the planet, that know exactly what you are going through on this forum.

There have been many stories flow through here, and many do not have ALS. Sorry to say, that some do.

Only test after test, qualified people reading those tests, and time will determine your personal path.

It's hard, but try and keep your mind busy, and your attitude positive during it all.

Cheers,
Casey
 
Hi there,

Just wanted to say hello and let you know there are many, like myself, who are going through a very similar and scary diagnostic process, so you're not alone. I'll say that the people at this forum have been so helpful, caring and informative that it's been the best thing to happen to me since all this started, so we're both in good company. Being in limbo is stressful to say the least, but I remind myself daily that there are so many medical conditions that can cause these symptoms and, until a professional conclusively tells me I've got a serious illness to worry about, I try to keep an open mind and remain hopeful and positive. Some days it's easier than others.

Here's hoping you get good news. Take care.
Luke
 
Philip,

Hello and good luck. It is very stressful but let the doctor's do their work. I went through many, many tests - but there are so many things out there that have similar symptoms. I wish you the very best. The support on this site is invaluable (as you know from reading posts for so long). The EMG is quite an experience, huh? :) I am hoping for good news to come your way.
 
Philip, I think you have been treated appallingly by your neurologist. Part of a consultation with a doctor, is just that CONSULTATION! He should be talking to you, answering your questions etc.

First do no harm! Well that includes helping with a patients anxiety over their health concerns.

I am sorry you are going through this and wish you the best. Make sure you tell your pcp, that the neurologist is a crock, and not to refer any more patients to him. Oh and I was told on the spot, what the results of my EMG was. Would have driven me crazy having to wait.
 
I'm with Aly. The neurologist has no bedside manner at all, obviously. Call the GP and have him order the copy of the EMG report. Call the neurologist that your GP sent you to and GET AN APPOINTMENT for results--or get him on the phone perhaps.

We have a saying here--it can only be ALS when it can't be anything else. The neurologist I saw ordered a brain MRI (as I'd already had MRIs of my spine that were recent) Your doctor should likely as well.

Personally, I'd bypass the idiot neurologist with no bedside manner (I call him an idiot based on that--not his knowledge) and see an ALS specialist--rather, a neuromuscular specialist.

You're in VA--so you have access to some good doctors. Contact the ALS association and ask for a name -- or find them on the i n t e r net to get a list of neuromuscular specialists in your driving area.

Your symptoms sound distressing--I'm sure you're stressed right now--but it could still be other things. There are still other possibilities, so try not to think the worst unless you are told to by a GOOD doctor.

You will find a wealth of information and support here. There are some wonderful people that will help you while you're in the 'holding' pattern for a diagnosis.

Without having done an MRI--I just don't think he can say for sure that it's not trapped nerves--so hang on to that. It's ANYTHING but ALS until that's simply all that is left!

When did this doctor schedule you for a follow-up appt? If it's not very soon--contact your GP for a referral to a different doctor with reports in hand!

Best wishes for positive answers.
 
Get an appointment with an ALS specialist--if your emg comes back as clean you can always cancel, and if it doesn't, you don't want to go to that cra;ppy Neuro with a bad manner.

Try to be positive but it is hard. The internet is a dangerous place for someone who suspects a serious illness--TMI will make you sicker!

The ALS association website is a good place to find an ALS clinic, and those doctors would be the best at diagnosing and have much compassion.
 
I know it is stressful but you need to wait for a Dr. to you what is going on. Perhaps I missed this in your post but have you had an MRI performed?
 
Philip, how close is yorktown to richmond. Surely your gp can refer you there. Its a teaching hospital, so you would be seen by more than 1 doc tor. And if you are closer to the maryland side, johns hopkins is the place you want to go. They have been ranked number 1 in neurology for over 20 years.

If you have a good relationship with your gp, stop by and fill out a medical release form for him to get a copy of your report. If not go to the neuros yourself and fill it out and call ahead so they have easy access to it. Please don't try to decipher it yourself, we have a very qualified expert right here who will read it and answer your questions. You can either post it here or on his message board. His name is wright and he's a professor and always wright on time. When you get 10 posts, you will be able to pm him or anyone else here

Now you realize you have to take charge of your medical care. Good luck to you,
 
WOW. All I can say is wow.
I am truly overwhelmed by response from so many caring people. It is amazing. I have not had an MRI yet. I suspect one will be coming though.
The Neurologist I'm seeing is part of an ALS team dedicated here at a large facility in Newport News Va. They seem to have a support structured staff and have dedicated ALS therapy staff and weekly/monthly meetings.

As far as the beside manner, I just didn't know what to expect and was just doing what was needed to get a thorough test. I didn't want to be suggestive to him in what it could be. I would like to think that they would not say anything until they actually start performing tests and getting results back.

And everyone here is so right. I try to not think about it and focus on great wonderful things throughout the day, but then that wascawee tremor in my thigh or my hand, or my shoulder, then the weakness starts up and for hours my muscles feel like slabs of meat just hanging on the bones. I then accidentally start thinking about it and what would I do to start preparing my family. Because after all, every day is precious.

But all in all, thank you everyone. I will keep everyone here updated and pray out loud for everyone here in these forums. To the caregivers, to the family members, and most of all ... to the one's diagnosed and in the fight.

I value each and every opinion & suggestion given. Thank you.
:)
 
philip, So sorry for all you are going thru, it will take all the patience you have till the test are done and reviewed. Limboland is not a good place but we have all been there and know what you are going thru, hang in there, Think good thoughts and I hope and pray they find something else that can be cured or atleast treable. Prayers for you.
 
I'm so sorry you have to go through this Philip. The diagnostic process in neurological disease can be a long one. There are multiple issues to rule out before your doc will say it might be ALS.
 
Toto gave you some very good advice. Get copies of the report. Your GP can decipher the report for you--even if he can't give you a diagnosis.

BUT--even if the EMG does show something abnormal, without an MRI to rule out spine issues--try not to panic. For me, the MRI was the first thing ordered---along with gallons of blood before the EMG.

I went to an ALS specialist--she did the EMG herself. Most neuromuscular specialists prefer to do their own, as I understand it.

Try to hang on to positive thoughts. It's very difficult to know something is wrong--and not know what. Just remember there is a long list of possibilities and not all are sinister.
 
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