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jpsteeler99

Active member
Joined
Jun 7, 2012
Messages
63
Reason
PALS
Diagnosis
06/2012
Country
US
State
NJ
City
Waldwick
First off, let me say I am in no way a hypochondriac. I have high cholesterol and acid reflux disiese but other than that, I hardly ever get sick. I do have a pain in my side for over six years but the doctors couldn't find anything so I just live with it. I am 44 years old and fairly athletic and active but I do work at a desk all day so that limits me a little.

It started about six months ago. My legs just didn't work like they used to. It didn't seem like muscle weakness and I still don't think they feel weak. They just don't move right and I have some foot drop and instability. I also have fasciculations all over my body and they are constant(2-3 per second in every muscle all day long). I have muscle cramping in my calves, hands & feet mainly but in some other muscles as well. I may be having a little difficulty with my speech but nothing major. I have no breathing problems or swallowing problems. I do have an excessive amount of Phlegm the last couple months but I think that might be allergies. Although, I have never had allergies before. The phlegm problem caused my ears to become clogged. They were clogged for about a month and then I when to an ENT and he inserted tubes in my ears and now a couple weeks later, my ears are fine. Still having a phlegm problem but it is getting better. I went to see a Neurologist and she did her initial testing and felt there could be a problem and further testing needed to be done. She mentioned NMD/ALS as a possibilty during this consultation. Seemed weird to me to throw something like that out there without even doing some serious testing. She took blood and urine samples and scheduled me for an EMG the next week. The office called and told me the blood and urine samples came back negative. The next week I went in for my EMG and NCV tests. Both test came back positive for NMD. She, again, mentioned ALS and may want me to see an ALS specialist. But before all that, she had me go for an MRI of my brain and cervical spine. I have not received the results for that and she only works Tue-Thur so now I have to wait until the middle of next week to get those results. She seems kind of young and inexperienced so I am not sure what to think here. I thought for sure she was going to say I was just stressed out. I almost didn't go to see her because I thought it was stress-related(see story below). Also, all the symptoms I listed above got worse when I started researching ALS and found out what it was. I also noticed that my left arm(the one she tested) seems to be a little weakened after the EMG/NCV. I would have taken everyone's advice and gone on with my life had I not tested positive on the EMG/NCV tests. Now I am freaking out.

Background: I lost my job in June of 2009. I worked at a Chrysler dealer for 15 years and when the government let them shut down over 700 dealers during their bankruptcy hearings, we were one of them. I had a very secure job and so did my wife. We were both making really good money, we had a nice house, 2 beautiful children and a place up in the country to go to on the weekends. Life was good. It all went down hill from there. Couldnt find a job so I ran my own business for a while that was somewhat successful but the bills were piling up for the business and personally. I found a job but it didn't pay near what I was getting paid. I continued to run my own business as well. It was a mail order business so I could do it nights and weekends. The bills continued to pile up so my wife and I decided to try and relocate to a more affordable area in late 2011. I found a really nice job in NC and we decided to go for it. I had lived in NJ for over 25 years and my wife and kids all their lives. This was a huge decision. We got our house in order and put it on the market in late February. I left for NC to start my new job. The wife and kids stayed back to finish out the school year. Well, the house sold the first week on the market. The job seemed to be going well but 2 months in, they pulled me and said they weren't happy and that I needed to run things their way or the highway. My wife has a very secure job as a teacher in NJ with great health benefits so I decided to take the highway. I just didn't see it working out with them and I wasn't willing to risk the security of her job and benefits. I moved back to NJ but now we are homeless because I don't have a job and even with a sizeable downpayment sitting in our bank account from the sale of our house, no one is going to give us a mortgage. So now we have to rent a house. I've owned a home now for over 15 years so going back to renting was a little dis-heartening. So, needless to stay, I have had 3 very stressful years leading up to this diagnosis.

I am setting up a second opinion but I just thought I would spill my guts here to see what you guys think. All the internet info is the same and very vague. I figured it may be best to hear from people who have dealt with it personally. Any input would be appreciated.

I would also like to say I am sorry that I never had a need for this forum until now. I think even if I am not diagnosed with ALS, I will be back to help other newbies. This has been the scariest 2 weeks of my life and a very emotional time.
 
I think it was pretty inconsiderate of your Dr to spout the ALS theory so early on, before you had any testing done. It's unsettling to keep hearing more and more people who have been treated that way. It's baffling.

That aside, I can quite understand your fear and panic. I think your need for a second opinion is very important, especially as you don't exactly have faith in your neurologist, which is not at all surprising.

There are a lot of clinical signs that have to go along with an abnormal EMG, to diagnose ALS. Hopefully your neurologist has been thorough.

On a positive note, at least your neurologist wants you to get a second opinion with someone who specializes in ALS.

It's going to be a hard time for you waiting on the results of the MRI and the second opinion. I wish you the best and will keep you in my prayers during this difficult time.

Best wishes
Aly
 
Sorry post went to moderation. Hope you read it soon.

Sorry about what you are going through and I hope things get sorted soon.
 
Yes it is scary. All you can do is wait. No one wants ALS, but an awful lot of people LIVE with ALS. I have never heard of a doctor saying a person tests positive for ALS. It is usually said that the EMG is dirty. Where are you going for a second opinión
 
She didn't say I tested positive for ALS. She just said the EMG/NCV showed some MND issues and that ALS could be considered. She wants me to go to a Japanese doctor at Columbia University in NYC. I forget his name but she says he is one of the best.

I also wanted to mention that my symptoms have not really gotten worse over the six months. The fasciculations are a constant all day every day but I don't have any weakness. I can still do everything I could do before except possibly running and jumping(i can't run very fast anymore and jumping is very limited), that is due to mainly because of the instability. Maybe what I am describing as instability is actually weekness but I don't think so.

One last thing, when I am nervous, my legs not working gets really bad and I have a real hard time even walking. But when the nervousness subsides, I can walk somewhat normal again. Example: My little league baseball team was being honored for winning a championship and I had to walk from the dugout to the pitchers mound in front of 100s of people and it was really bad. I wasn't sure I was going to make it to the mound.
 
Sounds like you've really had a tough time these last few years. The diagnosis process can be a long one and of course waiting for all the test results to come in is never easy. I believe we've had some folks on here who have been seen at Columbia, so maybe they'll chime in later on their experience.

In the meantime, pick up a cane to help with the balance issues created by the foot drop and ask your doc about getting an AFO (ankle foot orthotic, some call them braces) Foot drop can lead to unexpected falls and serious injury. I can't stress the importance of this enough.

Gather up copies of reports from all the testing that you've had done and discs from the MRIs to take along to your appointment at Columbia. The doc there will probably order additional testing and don't be surprised if he wants to do an additional EMG/NCV

Try to remain patient and let us know how you make out.

I'll keep you in my thoughts and prayers.
 
Remember, each off us is different. Mine started 5 years ago when I couldn't use chopsticks or take the top off the bottle of water. Probable diagnosis in 2009: all the clinical signs but not a "dirty" emg. My neuro is an ALS specialist, and he didn't say a thing until He was absolutely certain. I was at clinic yesterday, and thanked him for that. Let's see..you have a nasty disease we can't treat or cure. But because of his thorough note taking, my SS disability went back to 2009.

Try to remember that the only case like yours is yours. I know it's terrifying, but we are here to help. Once I found cases that were more like mine, the terror dropped down a couple of levels. Good luck!
 
The neurologist you mention at Colombia is one of the best. (I can't come up with his name right off the top of my head either).

Just know that whatever your diagnosis turns out to be, that you will be able to handle it. You've already been through much upheaval, and dealt with uncertainty, you coped with that, you were able to make clear cut decisions and also able to adjust to life after those decisions didn't pan out as you'd hoped they would. In other words, you've already proved that you are a warrior and survivor.

If your neurologist is correct in that you have a form of motor neuron disease, there are several different types that typically progress at different rates.

The best of luck to you. Please let us know what you find out, and in the meantime, try not to worry.

BTW, I'm assuming you're a Steeler's fan? If so, you've got company 8)
 
Let's see what your MRI says. Seeing a specialist like she is sending you to is definitely the right decision.

Whatever the outcome is you are obviously surrounded by people who love you. I hope you do not have ALS but either way it will not do you any good to stress out and worry about it because it will not change anything.

Good luck to you and let us know what the specialist says.
 
Sorry to hear about your diagnosed of ALS.

I think your neurologist should have waited before saying ALS.So many things mimic ALS.
I see you live in NJ
Try Terry Heiman Patterson in Good shepherd rehab ALS Clinic in Leigh PA.She is one of the scientist /md working on np001 clinical trial and many others . She is wonderful

Good luck
Patricia
 
HI

Hopefully, your doctor will continue to search for other causes of your issues. Other issues that can cause an abnormal EMG need ruled out--and it sounds like they are on the path of doing those things-- the MRI, etc.

We have a saying here: It can only be ALS when it can't be anything else. I hope they find a different answer for you, but you will find a world of support here in this forum while you wait for answers--no matter the outcome.

There are more than ONE MND--ALS isn't the only one--and not all are as dire--I wish you the best. Always have a second opinion. No matter the result.
 
jpsteeler99, despite the fact that you're a steeler fan, thought I'd welcome you to the forum! I'm with Notme, hoping that they'll find something else going on with you.

You've definitely been through the wringer the last few years, but you're blessed with your wonderful family. Stay optimistic and live your life. Even if it does turn out to be ALS, you need to keep living your life.

Good luck and keep us posted.
 
Okay, so I went to Columbia University to see Dr. Hiroshi Mitsumoto and he has agreed with my neuro that it is "likely" that I have ALS. He did order some more blood tests and suggested that I stop taking my Statin drug Lipitor. Does this mean I am officially diagnoseed with ALS? If so, when am I eligible for permanent disability? Do I have to wait until I am actually unable to walk?

Also, I have a question about my onset. I guess my first symptom was foot drop in my left foot about 6-8 months ago. I started noticing some weakness in my left hand a few months ago. Now I have thick speech and slurred speech which set in about a month ago. Would this be limb onset or bulbar onset?

Is there any truth to the rumors floating around about Lipitor causing "ALS-Like Symptoms"? I guess that is my last hope of ever getting better.
 
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