Follower to Newbie

[xtrinsik]

Hello! I've been following the forum for a couple of months now and thought it may be time to join in with you. I have grown such a great respect for the individuals in these groups and greatly admire that many of you are battling probably the worst disease conceivable and yet you respond with such grace. May God bless each and every one of you.
I thought I would share my story with you but wanted to say a few things up front. No I'm not scared that I might have ALS. So with that being said I'll tell you my story.



This past June 2015 I started getting terrible muscle cramps throughout my body. I was a distance runner and basketball player in high school so I'm familiar with exertion cramps, these were crazy and in places I didn't even think I had muscles. I didn't think too much about it other than it was odd however I was noticing that my body wasn't holding up to every day activities like it used to. It became quite an effort to walk up the stairs into my office at work or standing for long periods of time. My muscles would wear out super quick from simple things like holding my cell phone or a fishing pole for even short periods of time.



However what finally sent me to the doctors was this overwhelming fatigue. I saw my MD and he did the standard blood work and all looked good. He adjusted some meds and gave it some time to see if it helped. It didn't so he decided to order an MRI to rule out anything serious like MS. MRI looked good. I have a CPAP so he sent me back to the pulmonologist for a follow up sleep study. They did increase my pressure by 1 notch but ended up having no impact on the symptoms. I mentioned to the pulmonologist that I was having a weird breathing problem where at times I couldn't exhale through my nose while sleeping and have to open my mouth to release the air. It would happen a few times a week and he said that sounded like it might be a neurological issue so he referred me to a neurologist.



I saw the neurologist and he did a thorough exam. He noticed fasciculations in my legs and tongue, slight weakness in my left side and abnormal difficulty getting up from a seated position on the floor (for my age). I'm 41 and fairly fit except for this 40yr old belly. He basically said my physique didn't match my strength levels. He did an EMG/NCV and for the most part looked good outside of a few fascics.



He decided however to refer me to an ALS specialist. Over time the fasciculations became much stronger and I gradually kept feeling weaker however baclofen was really helping cut down on the cramping and even reducing the frequency and intensity of fasciculations.



I saw the ALS specialist and he did a very thorough exam and noted some weakness with resistance in my legs and some mildly brisk reflexes on my left side but otherwise unremarkable. He did his own EMG/NCV which also noted some fascics but overall nothing out of the ordinary.
He sent me for an exercise test which found that my heart and lungs were performing well however my muscle endurance was only about 75% of my expected value for my height, age, and weight. The neurologist asked me to come back up for a follow up and gave me the option of winter or spring. I said lets give it time and I'll come back in the spring but if anything changes I'll call.



On Thanksgiving I tried to carv the turkey as I normally do and found that my hands were quickly fatiguing and cramping. I couldn't keep cutting anymore so my wife had to take over. Later that day I grabbed a 2 liter bottle of Coke from the pantry and it felt really heavy and was slipping out of my right hand (I'm right handed). I moved it to my left and it was significantly lighter.



Later that night I noticed an indentation in thenar muscle. Over the past several days it's been getting deeper and longer but there's no pain or numbness just an obvious odd indentation that wasn't there before. I called the neurologist to get his advice and he said this sounds important and that I should come back up next week. So that's where I'm at today.
For the most part I'm feeling OK, able to work fine but still have trouble walking between meetings, and up stairs. I can't play basketball anymore and can only run on the treadmill for about 2 minutes before my legs wear out. I think the word that we use the most often is strange.



The neurologists that I've seen haven't found any evidence of ALS just symptoms that are consistent with ALS early stages but no real diagnostic evidence. They won't yet say they can rule out ALS but also can't really call it benign either.



All in all I'm not too terribly worried about it. My personality is one of just taking what life gives you and make the most of it. So if I did get an ALS diagnosis then I would deal with it then but I don't plan to worry about it now. I have learned a ton about the disease over the past several months and have been shocked at how ignorant I was to it. Even after the ice bucket challenge I heard the name ALS but never looked deeper to understand what it was. I learned that I had a childhood friend who now has ALS as an adult and I've been able to connect with her and again am just amazed at her strength of spirit. Something I see in common with many PALS.


I've read through so many stories that people have posted about their ALS stories and watched a lot of videos on YouTube. I so admire you all and as I said in the beginning may God bless you all! I'm not sure where my story will end up but I already take courage from each of you. Thanks for letting me tell my story.

 

[Vincent]

It's a crappy place to be, that part of the medical field that elicits blank stares and confused looks from doctors. On the one hand there is any diagnosis still on the table. On the other hand, no one has come right out and said ALS. I took it that I was 3 and 2 but still fouling 'em back. There are still lots of things that it could be. Keep hope alive.
Vincent

 

[xtrinsik]

Thanks for the encouragement Vincent! I love that analogy... it's a great perspective to have! As long as you're still making contact with the ball, you're still in the game!

 

[affected]

Thanks for letting us know but to be honest I just read a line or two at the top then the last line or two as that huge chunk of text with no paragraphs is impossible to get through. I think you were saying you know you don't have ALS. That's great, and being a member and coming here now is really unhealthy for you if you continue it.

Most of the PALS here working with eye gaze software or just huge fatigue won't manage it either.

Just so you know - it is often said here - format with paragraphs or the PALS won't cope. Well I'm a past CALS and I couldn't do it either.

All the best

 

[xtrinsik]

Thanks for the feedback and my apologies for the eye strain.

Best wishes to you.

 

[xtrinsik]

Grip Weakness, Muscle Changes

Hi Guys,

Just curious of your thoughts on some muscle changes. A couple of weeks ago I noticed a change in grip strength as I picked up a 2 liter bottle of soda. I later noticed changes to my thenar muscle. About 2 weeks later I started to notice a change in the bulk of my left thenar.

I'm currently under evaluation by a local neurologist and have a follow up with the ALS specialist later this week. I'm not freaking out, that's not my personality, I'm just curious. Would love your feedback.

Right Thenar

Left Thenar - Before

Left Thenar - After

Thanks for the feedback.

 

[lgelb]

Re: Grip Weakness, Muscle Changes

One thread to a customer, please; moved your last post. Thenar pics rely on angle and we are not long-distance diagnosticians.

I don't think we have anything more to add pending your next appt. Good luck w/ it.

 

[xtrinsik]

Goodness... I give up! Why do you have these forums if you just stomp on people who are trying their best to walk on egg shells so as not to offend anyone and just hoping to get a little bit more information. I never asked you to be a diagnostician. I know you get a lot of nut jobs on here posting crazy stories of a little twitch here or there and oh my gosh I have ALS. We're not all like that!

I'm sorry for what you went through. There is no way to know what it must have been like but your loved one was also at a point and time where symptoms were leading towards ALS and you just do your best to get informed. You get such little time with doctors and so you want to make sure that you're prepared and as educated as possible so that you can ask good questions.

There's no need to dismiss people seeking simple feedback and there is certainly no need to speak for all people on this forum to say that "I don't think WE have anything more to add pending your next appt." I appreciate the sentiment at the end but in all honestly when put in context it reads "get lost!".

Shameful, disappointing, and saddened for those who will come after me... not crazy, not battling anxiety, but genuinely trying to become more informed on what's going on with them. My sincere condolences for your loss! May God bless you!

John 16:33 “These things I (Jesus) have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.”

 

[Atsugi]

Xtrinsik, I think you're over-reacting. Remember that Internet communication lacks non-verbal nuances, so give us the benefit of the doubt. Lgelb was short and to the point, but not insulting. She's right: we are not, of course, long-distance diagnosticians.

Your hands look good to me. I'll try to parse out your mega-post and get back here in a few minutes.

 

[xtrinsik]

I would love to go back and break up that long message... unfortunately I don't have the option to edit the message. Thanks for the feedback... I'm glad to hear they don't look so bad. Thanks also for the reminder about reading too much into text based messages.

 

[xtrinsik]

Got your other message. Sorry I definitely don't understand the rules here. I don't intend to be disrespectful. Am I not allowed to post on anyone else's thread even to just encourage? I also saw from Igelb that you cannot post more than one thread. I missed that sticky at the top, so that's definitely my bad.

 

[Nikki J]

The problem with the posts on other threads is that it is a slippery slope. Historically Encouragement and sympathy often slide into advice giving,talking about one's own issues or develop into an ongoing comparing of notes. If you wish to communicate with someone you may leave a visitor message on their profile if they have enabled that function. Please do be aware all visitors message are viewable to anyone who cares to look just like forum posts so don't share anything you would not want public

 

[Atsugi]

OK, Xtrinsik. As you can see, I added spaces between the paragraphs of your posts for future readers.

Several very knowledgeable people have answered you so far, and I'm not sure my answer is much different. You shouldn't worry about ALS. It's a rare possibility.

ALS is a diagnosis of exclusion. That is, since there's no test for ALS, they have to rule out hundreds of other possibilities to arrive at a "probable ALS" or "possible ALS" diagnosis. This takes a lot of time and expertise.

You're in the middle of the process now. That's not much comfort, I know, but as we say in ALS-land: It Is What It Is. We have to accept some really sh**ty truth in our community, so we usually appreciate straight-up talk.

You might have any of many different problems. Typically an EMG will "light up" brightly if there is ALS, but your EMGs did not. So most probably you don't need to worry at all about ALS. If you must worry, worry instead about something that is more common.

Plus, your symptoms included a lot of sensory feelings like fatigue. But in ALS, a paralyzed muscle doesn't feel fatigued, weak, or weird. It just doesn't move.

Please be aware that it takes time for knowledgeable people (and Lgelb is one of the most knowledgeable here) to sort out the posts and provide any reply at all. The people who have ALS are, of course, our priority, and people who don't have ALS (it appears that you don't) should move along as soon as they've gotten a fair answer.

Good luck.

 

[xtrinsik]

Thanks Nikki, I completely understand. I appreciate the explanation.

 

[xtrinsik]

Thanks for the edits... you did a great job! Thanks as well for the advice. I had posted the thread in hopes of just having a dialog and being able to ask a couple of questions about the disease that have eluded me. It was disappointing to have been dismissed so quickly without even getting the chance to ask them.

I'm not worried about ALS... if I were then I should be afraid to get into my car and drive to work as the (risk of death 1/6500).

I'm a software engineer, researcher and problem solver at heart. When my wife had cancer I researched everything about it and went to every appointment with her. I asked the questions that she didn't think to ask.

I do however understand that the primary focus of this forum is to help PALS and their caregivers and I do not want to detract from that. So I thank you for the time and will do as you suggest and move along. You're doing a great thing for people with great needs... I admire your compassionate service.

Best wishes to you!
Rob