Anxiety and Twitching: Experiences

[RipleyGates]

I am only going on my experience here,but I dont care how many specialists we see, tests we have, clinics we go to,No matter how many times we are told everything is fine,All tests are normal. There will come a time down the line when you least expect it on a real bad "twitching" day that the fear will hit you again :crying: We must know this is going to happen and be aware of it because in the end the only ones who are able to defeat this thing and give us the reassurance we need are OURSELVES I can assure you that there are no amount of doctors or clinics or tests that will put our mind completely at ease,that is the brutal nature of our affliction, because NOBODY repeat NOBODY at this point knows the answers.Most of the time they are probably using us for practice,Not to mention the big bucks they are getting from our insurance companys. I am still amazed that some ins. companys even pay for all these tests. I mean come on, a single muscle fiber EMG, or muscle biopsys at the mayo clinic . Man what do they run anyway in the end I feel It is up to us and no one else

Sorry If I sound Harsh,But I Have Been there (Thankfully not the Mayo, Although I came close)

 

[BoyyDavoMan]

One thing that I've noticed among the people who frequent this site (myself included) is that many have hypochondria and obsessive-compulsive tendencies. For these people, there will never be enough proof or reassurance, unless their OCD is treated.

Yesterday, I was at the neurologist for a routine check of my thyroid. He thinks that my low thyroid is causing my BFS. In December, my thyroid stimulating hormone level was 10.1 (the normal range is 0.3 to 3, with 1 being ideal), indicating that I was still hypothyroid despite taking 50 mcg a day of thyroid. He upped the dosage to 75 mcg. Now my TSH is 8.3, still showing low thyroid function, so I am up to 100 mcg a day now.

While there, I told him about my newest symptoms -- hoarse voice, thick speech, swallowing problems, increased saliva production, facial and tongue twitching -- and he "confronted" me, asking me what my fears were. I told him that despite having BFS/PNH for over 3.5 years, I was worried about these new symptoms, knowing that they are signs of bulbar ALS. He offered to run tests -- EMG, MRI, etc. However, I refused. I freely admitted my hypochondrial tendencies, but at the same time rationalized my refusal based on my history of BFS.

So, despite being 3.5 years into this malady, and educating myself on the symptoms and prevalence of various neurological and neuromuscular disorders, I still have moments of doubt and fear. I think we all do. How we face these fears, though, is the key. Our afflication isn't brutal, as Roger G said, unless he is referring to the obsessive tendencies that many of us exhibit (again, myself included). But Roger G is right when he says that we need to work on OURSELVES to cope with the aches, pains, twitches, and above all, our FEAR. We all need to take control of our lives, and to face our fears with the knowledge and reason that we command. Remember, that between stimulus and response there is choice. We ultimately have the choice on how to respond to what is happening to us. May we all find the courage and strength to accept whatever life gives to us.

 

[RipleyGates]

Well Said. Like you said it is us who make this affliction as brutal as it is.What adds to this is that with every twitch we get we know that there is something amiss :crying: ,but we just dont know what All we can do is hang on. In the end it really does'nt matter much does it

 

[twitchamy]

I think a big part of this for most all of us is simply that we're afraid of our own mortality. I'm specifically addressing the mental fear we all have, not our physcial symptoms.

Personally I admit that the thought of death freaks the heck out of me. Even worse is the thought of death that is not instantaneous--you know, any illness that draws it out for a length of time and that my kids might have to watch me slowly perish.

I should say that it used to freak the heck out of me....I'm getting more relaxed about it now.

Oddly enough, my husband and I are currently in the process of drawing up a family trust, and I'm being faced with death head-on until we get these documents completed.

At the height of my BFS, I was totally obsessed with death and illness. Somewhere along the line, I let it go. It's no fun living life that way--and in fact, you're not really living life at all if all you do is obsess about death and dying of illnesses.

After I let that go (and I don't know how I did it---I just sort of adopted a F-it attitude and said 'to heck with fear'), things started getting better. My twitching started diminishing drastically, and overall I just felt better.
Looking back, I realized how selfish I was being by obsessing over my fears of illness and dying. More than anything, I wanted to be around to see my kids grow up. Then I slapped myself in the face with the fact that a million different things could happen that would take me off this earth tomorrow....or worse, something could happen to one of my kids, God forbid. Then, I just 'let go' of all those thoughts and started living life the best I can in every moment. I just don't obsess about the future (and things that are out of my control) anymore.

It's a constant challenge to stay in this frame of mind....but it gets easier and easier the more I practice doing it. My life and my family are much happier because of it.

BFS aside--I agree, there are other 'issues' that all of us need to conquer!

Enjoy your day everyone--
Amy

 

[garymills]

Amy,

I know what you mean about the "F-IT!" attitude. I distinctly remember when I finally decided that if i was dying of als or not, I was going to start living without the fear. I literally said to myself, "F-this crap, I'm going to stop worrying about it." And it worked. I think that for me at least, the damage i was doing to my life, wife and daughter was almost worse than death. So after moths of worry, I was finally able to accept my fate whatever that may be, and be a peace with whatever was to come. Now don't get me wrong, I still have my moments of worry, but my life isn't overcome with it. And I'm still walking, talking, drinking and eating after nearly twenty months.....Man I'm glad I didn't obsess over the garbage that whole time ) .

Take care,

Gary

 

[BoyyDavoMan]

ydav3yat3s -

I agree totally. My brother is doctor, and chief of the U.S. Air Force hospital in Charleston. He said that even when people get their thyroid levels in the proper range, they never feel the same as they did before the thyroid problems arose.

Part of the problem, I believe, lies in the fact that when you take thyroid meds, the levels fluctuate significantly. You have peak levels just after you take them, and then it decreases until your next dose. So you go on the yo-yo thyroid trip, with part of your day with thyroid levels too high and part of the day too low.

Plus, thyroid disease is usually autoimmune in origin, meaning that despite taking the replacement hormone, you will likely still have associated antibodies running around your body, attacking what they may.

Fun!