Terrified About Systems

[trfogey]

Now you should try and get on with things.

Not going to happen. Don't you know that the demeanor of the doctor is much more important than what he actually says? :roll:

Personally, I'd be much more prone to be skeptical about being told that brain atrophy and changes in white matter aren't anything serious than I would be about the change in the doctor's demeanor about a few twitches, but that's just me.

 

[hopingforcure]

I think those of us who have been lucky enough to be around a while, just get tired of the forum being hijacked by people who have nothing remotely like ALS. I can tell you that you will not have a CLEAN clinical and such with ALS. I think that this takes away from the goodness and friendship of our fine forum. I can tell you I remember when the "Do I have ALS? was added, and as I have said before, those individuals like tons and tons of others who have come and gone from the form dont. If a quarter of the people who come on here for support and then leave, would support the ALS cause, well you all get were I am going.
..

 

[brentonjb]

Not going to happen. Don't you know that the demeanor of the doctor is much more important than what he actually says? :roll:

Personally, I'd be much more prone to be skeptical about being told that brain atrophy and changes in white matter aren't anything serious than I would be about the change in the doctor's demeanor about a few twitches, but that's just me.

trfogey I'm really confused as to why you continue to mock me throughout this thread. Logically I'm going to assume it's due to the frustration and annoyance via the countless number of "OMG Do I Have ALS?" threads. Threads that I'm sure will even follow after this one is over with.

To that end I'm really sorry. It's not my intention to fall under that umbrella. I personally came to this forum seeking support. Support and potentially guidance from people who have been through, or may have knowledge / expertise of similar situations. Quite frankly I came here because I've been scared. Scared of *symptoms* I'm having which to date, I nor the limited number of doctors I've seen can explain.

If I offended you by coming here and detailing my symptoms (whether they're relevant, logical, or even remotely related to ALS or MND's), then again I truly apologize. Thing is, when I began feeling this way, I started to look this up on my own (which I acknowledge isn't the most productive thing one can do, albeit it's sometimes the -only- thing you can do when you don't have great health insurance). Unfortunately ALS is one of the first things that popped up in my search regarding how I was feeling; muscle twitching, stiffness / weakness of my arm and leg. So yeah, I was petrified.

Unfortunately I can't talk to my family about this, because the one's closest to me I'm already currently taking care of them. I imagine it would ruin them emotionally if they knew I was trying to see a neurologist. Therefore in a lot ways, what little dialogue or information I can exchange or absorb on here, helps me out in more ways than you can imagine.

That being said I'm not asking for sympathy. I'm well aware there's an entire community of people on here suffering in ways far greater than I'll ever understand. My heart and mind truly goes out to them, and their loved ones. And while my posting on here may have at times come-off as desperate, unintelligent, or misinformed, I suppose that's just a response to a fear I've never experienced before.

Lastly as it pertains to this forum, I'm not looking for a diagnosis. Despite what you may think, I'm aware no one here is a doctor, and couldn't possibly assist me medically in any way. It was my hope, however, that there is sufficient people here with enough experience or knowledge of concerns I'm having that could help either ease some anxiety, or perhaps steer me in the right direction.

 

[lydia]

Hi Brenton,

You don't have to apologize for or explain your posts. Almost everyone who finds themselves in this part of the forum is frightened and looking for feedback. A few past visitors have behaved badly and then any subsequent visitor can seem like salt in the wound to some forum members. Understandable, yes? Sure! But for other members, a visitor is just fair game for some bizarre sport of whack-the-newbie. Contrary to the messages conveyed by some, you can post here prior to fully interrogating your physician regarding your worries; it's not like it's in the fine print of forum membership rules.

Lydia

 

[TedH5]

Brenton,
You can feel free to post here. That being said as Trfogey pointed out I would focus more on what your Dr's say and less are their Demeanor as that can be difficult to interpert. I would be concerned and questioning about the potential Brain Atrophy etc. So please feel free to share what your Dr's say and ask general questions. I think many people get frutrated when pics get posted and the appearance comes across that you are asking us for a diagnosis or when a Dr says one thing but a patient doubts there Dr and believes the internet or their irrational feels that have been brought on by anxiety. So yes much of what you read is a result of the accumulation of people that come on and are way out in left field and refuse to listen to their Dr. That has obviously lead to much skepticism here. That being said you are more then welcome to ask your questions or look for guidance here.

 

[Northern Dancer]

Perhaps everyone should google the definition of 'anxiety'. I found this one: 'Anxiety is a multisystem response to a perceived threat or danger. It reflects a combination of biochemical changes in the body, the patient's personal history, memory and social situation. Human anxiety is produced by the anticipation of future events.' It is as real as any other dis-ease. No one wants to be anxious.

Whether the new poster's symptoms are typical neuro signs of MND or not, he or she is most likely extremely anxious. So here are a few questions that always cross my mind on a thread like this.

When has repeated criticism of the poster's fears ever resulted in anything other than more anxiety? This 'solution', of course, leads to more queries that seem to bug the h*** out of some folks. These same people are then compelled to turn the situation into a character smearing, name calling free for all.

Who benefits from this exchange?

 

[brentonjb]

Update:

I went to an ENT today to try and test my vocals as I've been feeling as though my voice is getting weaker / a tad hoarse. Unfortunately I wasn't able to even do the test as my gag reflex is so bad that he couldn't stick the camera down my mouth. Was quite embarrassing to say the least. Does anyone know of an alternative method I can approach this? I wasn't charged, but never-the-less I was looking forward to some piece-of-mind.

As far as other symptoms are concerned, my knee was very stiff almost all morning. Still had good mobility and wasn't experiencing any weakness, but for whatever reason it feels stiff (almost as if there's fluid inside of it) and slightly fatigued. I took 3 tylenol around lunch and it seemed to help a little bit. I went out and walked the dog and was able to run on it, so that was a good sign. Has felt better most of the night since minus my hamstring feeling as it was about to cramp at one point. That, and I've had fasiculations in both legs all day, but that's nothing new.

Also I learned today that my mom (who's 54, I'm 24) has rheumatoid arthritis, so perhaps that's something to look into. Likewise we have a family history (one of my aunts) had parkinson's. Does anyone know if fasiculations are associated with parkinson's? The only thing I was able to find were tremors which I already have.

 

[Alyoop]

Brenton when I had the test they sprayed a good deal of local anesthetic first. I could never have managed it otherwise!

 

[brentonjb]

Yeah he sprayed a bunch of it too, tasted like rotten banana's. Still wasn't able to stop myself from gagging. He said there's a small % of people who physically can't handle it, and he didn't want to torture me. So off I went.

I'm going back next month to have them go through my nose to check my reflux or something. He said the Doctor at that time will be able to possibly get an idea of my vocals, but he didn't sound confident. Perhaps I should have taken an ativan or something.

 

[Al]

Therein lies the rub Brenton. After the ENT appointment you ask us what to do next. How the heck do we know? Why not ask the ENT. Right there you've peed off half your readers. If they bothered to read more, then you announce you're going back next month. Perhaps you should forget the ativan and ask more questions of the docs/techs. I'm not being mean but logical.

AL.

 

[jrdegitz]

Brenton,

I would put it completely out of your mind. I had symptoms that I thought pointed to ALS but a visit to my doctor informed me immensly. You said most of the problems start in your shoulder and into your neck. You also stated that it shoots down your arm and into your hand. This is not how ALS starts, most of the time. If it shows up in your lower extremities, then it will affect your feet first and work its way up, not start in the hip and work its self down. Same thing with your arms. It will start with your fingers and work its self up. Not start in the shoulder and work down.

 

[brentonjb]

I completely see what you're saying Al. I understand why that might frustrate or anger some of the community here. I guess I should have known better. I really apologize.

To be honest, I have a bit of social anxiety, and don't really communicate myself well. Particularly my fears or concerns in person (don't ask me why, but I always leave Doctor appointments feeling pushed around). But as someone already said in this thread, I'm paying for these expensive appointments, so I need to get my money's worth. Or at least better piece of mind.

That being said, jrdegitz, I really do appreciate the response and insight. At this particular point and time, however, putting this out of my mind is a lot easier said than done. Mainly because of confused I've become.

When I first started this thread, my only concern was just my left shoulder and arm. (I know I mentioned my tongue / speech, but there's a logical explanation for them). Two weeks ago my left arm felt fatigued and numb, and I began noticing fasiculations in my bicep / tricep area. I had noticed some fasiculations in my legs then too, but that was about it at the time regarding my lower body. My arm just didn't feel right.

Now, fast forward two weeks later, and my left arm and shoulder feel pretty good. There's been a few times since when it's felt fatigued, but otherwise I haven't had any weakness or twitching going on.

The issue now is my left leg. The left leg constantly feels fatigued, and my knee feels very stiff at times. However, I do have good mobility in it, even when it feels stiff. Likewise I've never had any clinical weakness that I can tell of at all. Which definitely makes me feel better.

I guess now the confusing part has been the fasiculations in my left leg. They happen frequently in my calf and in my foot, As well as some cramping in my calf. The cramps just started today while walking out of work. Quite honestly, I'm not even sure if they were cramps, as they were so short-lived, but definitely a very brief period of stabbing pain in that area. When I got into my car and sat down, I looked at my calf, and the fasiculations were very noticable and bad.

I know everyone's experience with any disease (especially rare one's like ALS) is different. I've read through so many statistics, symptoms, and hallmark signs in cases. Page after page of misinformation from one website to another. At this point, I'm not sure what's going on with me, but I will say it's nice to have kind souls help guide me down this journey. Wherever it may end.

 

[TedH5]

I am quite sure that what you are feeling in your leg will go away and your leg will start feeling better the same way that your arm and shoulder started feeling better. As you said ALS is rare and fascillations are not necessarily indicative of ALS at all. Take a deep breath, take your concerns to your Doctor and see where it goes. You are allowing your anxiety to get the best of you. Don't talk yourself into having ALS. Heck I'm still trying to talk myself out of it! Anyway see what your Dr's say!

 

[brentonjb]

Thank you for the kind words Ted. I've read quite a bit of your posts lately, and you're (among others) definitely in my thoughts and prayers.

In regards to my symptoms, I will continue to keep trying to think positive thoughts. Granted it's rather hard at times when I'm twitching or cramping. But to date I don't have any muscle weakness, and so my hope is that this can't be ALS / MND, because if it were, then my arm wouldn't have gotten better, and my leg would just continue getting progressively worse (which it's not - have good days and bad).

Hopefully that's not false optimism.

 

[TedH5]

Thank You for the Prayers, I know we all need them and appreciate them. I understand that your twitches and cramping i smaking you nervous but you ned to focus on the fact that you have NO weakness. ALS is not about twitching and and cramping it is about weakness. I have a hard time opening ziplock bags, that is weakness. I can not beat my 7 year old daughter in arm wrestling with either arm, that is weakness. Focus on the fact that you have no weakness do not focus on twitches that are typically totally benign.