Follower to Newbie

[Atsugi]

"... if I had come here and not posted to the DIHALS forum and instead posted that same question, would you have moved it to this forum?...Is it not acceptable to ask legitimate questions?... Is there a reason that you ask this?

We have to prioritize, and general educational discussion is a secondary priority. We have to maintain some rules in support of our first priority, the PALS and CALS. I personally would really enjoy chatting about the issues you bring up, but there is a slippery slope--the forum could quickly become a general hangout for those who don't have ALS.

Rob, during the past few days, several of us have spent hours dealing with one member who appears not to have ALS and states he does not think he has ALS. This time took away from supporting several other people who do in fact have a debilitating terminal disease. It has also upset a couple of observers.

You're obviously very bright and curious. I suspect that satisfactory answers to your inquiries would require expertise and time that are not available here. I look forward to reading reports from your next doctor's visits. --Mike

 

[xtrinsik]

Hi Mike,

Thanks for the time... I think I totally get it now. You have spent tons of time with me, as have a couple of others and you certainly didn't have to. That says and means a lot. Those questions that I asked were really the things that I had been wanting to find out since joining the site and you guys have answered well. As you said we could go much deeper but to the detriment of those who really need your time. I greatly appreciate your time and patience! As I mentioned to Tillie I've started physical therapy to see if I can regain much of my lost strength, but also give me something to focus my attention towards as well as feel like I'm doing something to fight back. I'm hoping this yields some promising result. Thanks again for all that you do! You're a good man and I've learned much from you...I'm grateful for that!

Rob

 

[xtrinsik]

Quick update. I've started having much more frequent swallowing issues. Most often it's just choking on saliva for no good reason, but now happening several times in a day where it used to be just once in a while. Ive had two occurrences now of swallowing issues when eating food, holy cow is that unpleasant. It seems to happen more with dryer foods like chips, fries, etc.

My voice has also changed to a lower more raspy sound. I thought that I was just coming down with a cold but its been quite a while and no cold has developed, no sore throat, I just sound like I have a cold.

My hand muscles are still losing bulk but really not too quickly which is good. I can still use them OK, my grip is definitely weaker but not to the point where I can't completely grip something, I just can't do it for long and with much less weight.

I'm heading back to see the local neurologist on Thursday. In all honestly I'm still staying positive. I think through this journey I've learned not knowing is a good thing and so as long as I don't hear the words you have ALS I'll keep living like I don't but just deal with the symptoms as they come. I'll admit, I don't care much for these new symptoms. I never know when I'll start choking... I hate the feeling that I can't get food to swallow completely, and I despise the feeling when I choke on food. Hopefully I'll figure out some triggers and be able to decrease the frequency. Perhaps eating slower, avoiding certain food textures etc. It's all still pretty new some I'm learning the hard way.

Have a good day folks! Touch base again soon after my appointment. My best to you all!

 

[Atsugi]

swallowing issues when eating food

This kind of choking is not like ALS choking.
Look at your tongue in the mirror. Move it up, down, left and right. It's not paralyzed.

My voice has also changed to a lower more raspy sound.

A raspy voice has nothing to do with ALS.

grip is definitely weaker
Maybe a pinched nerve?

see the local neurologist on Thursday
Good.

 

[xtrinsik]

Would you just stop it already? It's just getting cruel.

 

[Atsugi]

Rob, I answered your questions:

• swallowing issues when eating food
• This kind of choking is not like ALS choking.
• Look at your tongue in the mirror. Move it up, down, left and right. It's not paralyzed.
• My voice has also changed to a lower more raspy sound.
• A raspy voice has nothing to do with ALS.
• grip is definitely weaker
• Maybe a pinched nerve?
• see the local neurologist on Thursday
• Good.

Now, Rob, you think I'm cruel?

Would you just stop it already? It's just getting cruel.

You definitely need to get a handle on your emotions, and calm down.

 

[ShiftKicker]

You are asking people who have a terminal illness, or are caring for people with a terminal illness, to comment on your symptoms. Repeatedly. You have continued to come to this forum after having been told your symptoms do not sound like ALS. Mike is not cruel, he is replying to your myriad messages in a straightforward and honest way.

 

[xtrinsik]

I haven't had a good beating in a few weeks so I thought maybe it's time to write a new post! (I say this in jest)

Contrary to recent advice the progression over the past few weeks have been downright terrible.

I had a Video Fluoroscopy to see what was causing my swallowing problems. Both the ENT and the Speech Pathologist told me that they didn't expect to see anything in the test. They were quite surprised. The ENT told me that my throat is like that of an 80 year old man (his words not mine). He said I have significant damage to my throat as the result of a serious neurological disorder. As a result it leaves my airway exposed and allows thin liquids and small food particles to go down the wrong way causing the choking.

The change to my voice is a result of my vocal cord atrophy. The ENT said that though he can't predict an exact time frame but on the average I could lose my voice completely within 6-12 months.

My breathing difficulties are due my soft palate and uvula closing off the nasopharynx while I exhale. Each of these symptoms he attributes to a serious neurological disorder.

My neurologist checked out my hands and confirmed that my thenar muscles are atrophied. He repeated the NCV and confirmed that it's not caused by carpal tunnel or other nerve impingement.

I'm being referred to Mayo in Arizona... I sent up my records today and they said I should get a call Monday or Tuesday to setup an appointment. Both my ENT and MD have encouraged me to take time off of work to conserve my voice and energy, spend time with family and friends and get things in order... basically prepare for the worst but hope for the best.

My neurologist said it definitely looks to be bulbar symptoms on top of the hand atrophy but what he can't understand is why it's not showing up on my EMG. Hence being sent to Mayo in hopes of figuring this all out.

 

[xtrinsik]

Guys, I was seriously just kidding around. I wish you knew me better, I'm a very friendly loving guy. I love to joke around... my attitude is always positive. Unfortunately you saw the side of me that struggles with injustice and so you saw the defensive side of me. Not just for myself but for others who will come after me with similar symptoms. I'll always stand up for the little guy.

So our perspectives on here are probably severely skewed.. I'm sure you're great people and I think I've said so many times, but I've known that my symptoms were real although I may not have described them as best as I could. The responses that I would quickly get are, doesn't sound like ALS, you're fine, stop bothering people. That in all honestly is hard to take when you're just seeking guidance as you navigate closer and closer to a horrible diagnosis.

So if possible I would like to call a truce. I've never meant harm but only wanted to be treated with more respect and not so quickly dismissed. I admit that I did a poor job of controlling my emotions as Mike rightly pointed out. But having confirmation that these symptoms are real has been comforting.

At this point though I could really use your support. I'm being told to prepare for the inevitable diagnosis of ALS. I know the big hiccup is the EMG but on Feb 10th I'm going back to the specialist for EMG #5. I know it goes against conventional wisdom but they are not convinced that a clean EMG means no ALS it just means that it wasn't detectable at the time. They admit that it's rare but they have seen it before.

Aside from that, they simply can't explain what else would cause the damage to my bulbar region or my hands as well as the many other ALS like symptoms. They tested for everything under the sun and so this is really the only possibility left. I'm certainly no expert but I trust what they are telling me. The Mayo trip in a couple of weeks will be helpful as a second opinion.

Anyway, sorry for another long message but I hope this brings some clarity and perhaps is a beginning to repairing some sore feelings on both sides. I wish to be a helpful member here not a hindrance.

Rob

 

[Atsugi]

Looking forward to the results of your Mayo visit. Hoping for the best, Rob.

 

[xtrinsik]

Thanks Mike, very much appreciated.

 

[Nikki J]

Certainly wish you the best. When is Mayo and why are they sending you all the way to Arizona from New York? Is it a sooner appointment?

 

[xtrinsik]

Thanks so much Nikki! That's a great question with a neat story to it. I have a friend from childhood who was diagnosed with ALS 5 years ago. She lives in Arizona about 30 minutes from Mayo where she goes. She said she has a wonderful doctor there and mentioned my situation to him asking if he would be willing to see me. He gladly agreed and we had all of my records sent up to him to review. He will give me a call on Monday or Tuesday after he's done reviewing the records to schedule the appointment.

Best yet, my friend offered that my wife and I stay with her and her family while I'm being seen. So that's why we chose Arizona over Florida or Minnesota. I also found that I can book travel through my company at a discounted rate, so it's really working out well.

Thanks again for your encouragement, it's so very much appreciated!

 

[Nikki J]

Sorry about your friend. She must be slow progressing to manage company after 5 years. Hope you can have a good visit

 

[xtrinsik]

She's doing remarkably well at 5 years. Uses Tobii to communicate with her eyes, can no longer walk but can stand under her own strength. Breathing and thicker foods are still ok. She has a remarkable spirit! I can't wait to visit!