4 months into twitching, my update

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Re: 4 months into twitching, my update

Postby whatmeworry on February 8th, 2012, 3:06 pm

I know what you mean, jerry. its hard to believe that medicine cant get some kind of interactive debugger, or just insert logging statements, and track this down. But they just cant. not yet, anyway.
This is where "treatment modalities" comes in. lots of people here do various things
to help. you can read up on that.

But dont fret, i was talking to a guy in a QA consulting firm in eastern europe a few months ago with the exact same crud. The neurologist i saw at my EMG does three BFS cases a month (so he said). I think in our modern world, stress induced bfs is common. but not everyone can make that link. for others the cause is less clear. IF you end up being in the anxiety camp, at least you know what youbcan do to tmper it. Its not all bad.
Anyway, maybe an EMG would get rid of that 20% worry. it helped me a lot.
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Re: 4 months into twitching, my update

Postby jerry2 on February 8th, 2012, 3:13 pm

whatmeworry wrote:I know what you mean, jerry. its hard to believe that medicine cant get some kind of interactive debugger, or just insert logging statements, and track this down. But they just cant. not yet, anyway.


You have to be a computer programer also by this words!!! ;-)


whatmeworry wrote:Anyway, maybe an EMG would get rid of that 20% worry. it helped me a lot.


Of course it would, coloscopy saved my sanity. But EMG is not coloscopy where they tell you you DON'T have cancer and you will not have it for 10 years to come, so it really doens't matter wht comes out from behind...

Neurologist scared me of some atrophy in my palms (see my other posts if you need to know more), rheumatologist saw some suspected erosion in my SIS joints and made me think 2 months I have AS. I mean... It would take that 20% away if the EMG would be OK. If it would be like: there is something, can be this or that or suspected this or that it would add fuel to my anxiety. And the whole going there would refuel my anxiety back, my psychiatrist told me to stay away from doctors for now, they just fuel my fears and I fuel my fears with them myself.

Of course, if the twitching gets any worse, if I get some weakness... I will go... I guess...
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Re: 4 months into twitching, my update

Postby whatmeworry on February 8th, 2012, 3:34 pm

jerry2 wrote:
whatmeworry wrote:I know what you mean, jerry. its hard to believe that medicine cant get some kind of interactive debugger, or just insert logging statements, and track this down. But they just cant. not yet, anyway.


You have to be a computer programer also by this words!!! ;-)



Busted! I do a lot of code writing, and debugging.

I did the colonoscopy thing about 15 years ago. Afterwards, that was the first time a doctor looked at me and said, "You have got to relax or THE ANXIETY will kill you."

Recently, when I got my EMG, the neurologist asked me if I had irritable bowel. I said yes, and he just nodded, smiled, and said "uhuh. That's the pattern. (for my kind of twitching and pain)"

I just read your post from October where you wrote
I have many health problems for 7 years. Up to last week I've had urinary tract infections without infection, stomach problems without anyvisible problem on gastroscopy, big colon problems from constipation, diahhroea, mucus, burning for months etc... Nothing was found on colonoscopy. I have mental problems in terms of health anxiety. I do have health anxiety and I fear cancer the most. Well, not any more, but let's go slowly... I have (had) cancerophobia, I thought I had colon cancer, stomach cancer, bladder cancer...


Here in the US, they used to call the urinary thing 'Chronic Abacterial Prostatitis" (urinary infection without the infection, as you said.) They've given up on that diagnosis as it is, frankly, BS, and endless NIH studies proved it. Wrong assumed etiology focused on the prostate. More usually, the problem is actually only partly the prostate, but instead includes twitching and cramps and tension in the surrounding muscles. Sound familiar? Crotch BCFS, basically.

So now they just call it Chronic Pelvic Pain Syndrome, as males experience it, and the best treatment for it is antidepressants, physical therapy, yoga, and relaxation. Just saying!.

My twin brother ALSO had this (he is also nervous) and his PT told him that it is a very common problem she treats quite often in soldiers just getting out of boot camp, but they like to keep quiet about it.

Ok, I seriously am done stomping around with my particular beliefs. I'll lay off it now.

But just know, you are not alone!

p.s. my butt just twitched.
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Re: 4 months into twitching, my update

Postby jerry2 on February 8th, 2012, 4:11 pm

Indeed we seem to have much in common, even the job ;-) No "normal" person would use a language like that for debugging ;-)

Yes, I diagnosed myself after not being diagnosed by the doctors as having Chronic pelvis pain sydrome. I don't know what it is, last time happened just before night tremor began, I've had urinary tract pain, burning, frequency, testicular pain at the same time for 10 days. No infection again :-& Right after that my nerve problem began.

My doctor (neuro) was ALS specialist and refused to tell me anxiety can be a problem although I was shaking very bad when in office and after he told me I may have atrophy in left hand I think I got to some form of "nervous breakdown". I thought my life was literaly over. From that day I am even exam scare or how do you say to people that are scared to go to the doctor in the first place :-(

I am starting to realise when I fight with my wife, a day after I have worse twtiching. Or if I come to some stress, but it happens with delay and it is hard to get rid of it again.

I must have some nervous problems if I tell you that for years now if I have to get out of bed early like at 7AM for the job, I wake up at 5 AM and I can not fall back asleep. If I do not have the time set in the morning I still wake up t 5 but I am able to sleep further after some time. That is no disease, that is NERVES even to me!

If all this is ALS I will make a cover story for unusual setup I think. But it is ruining my life, the quality of it. The twitching is ruining the head, the night tremor the sleep, but the pain is ruining my abilities. I was running before october to keep some condition and dancing, I can still dance but with much problem due to pain and now ankle pain, but I can not run any more, I can not ski any more :-( Ok, now is -15 degrees here, I wouldn't run anyway. But the point is, I am healthy and I feel like 80 years old :-( I am too good to be sick (I can walk, talk, eat...) but I am way too disabled to be healthy.

But if I understand you correctly, you also had Chronic pain syndrome before twitching started? You also had some colon problems if you went to coloscopy? You are too young to be just cheking it... So how are you coping with twitching and pain then Yoga, meditation, are you still on antidepresants?
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Re: 4 months into twitching, my update

Postby Silverbullet on February 9th, 2012, 3:29 am

To be honest the fasciculation's were not the thing that bothered me the most, although annoying and uncomfortable. For me It was the loss of dexterity and body coordination,this basically caused a functional disability. Fortunately this has improved, but not gone. I guess because I am not so freaked out about it has helped hugely. I also experience pain but not as bad as some.

Regards Martin
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Re: 4 months into twitching, my update

Postby jerry2 on February 9th, 2012, 3:32 am

If there would be a way I would 100% know that fasciculations are NOT ALS and NOT from MS I think they would not bother me at all.
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Re: 4 months into twitching, my update

Postby whatmeworry on February 9th, 2012, 10:52 am

Hey jerry,

Yes, my tests were due to irritable bowel. i had chronic pelvic pain before i developed classic bfs. (not going to declare them related, just noting similarities.)

I take an atidepressant. I had to find the right one, though. Some were not particularly efffective.
The one i found works veryy well at a low dose.

Note that SilverBullet did not let himself get too worked up. This was important and healthy, and he beneited.
Can you contrast that in your mind with how worked up you get? It will make the muscle pain so much worse if you stay tense.

Maybe getting angry with your wife is covering for something deeper. a different emotion, feeling, fear? But keep in mind that I am not a psychologist, AND anger is the #1 response of men to depression. #3 is waking up
at 5 and not being able to sleep.

yes, i also ran alot this summer, and having to stop when my calves hurt too much made me even sadder, because exercise is just so good for body and mind. But now that i have been calming down for a month my pain is gone, and the twitching no longer scares me. so i am back to exercising. (i was inspired by other twitchers on this board)

Jerry, from all that you say i really just think you need to get more help and lower your anxiety and dpression. you will feel so much better.

I wont waste your time with any more lecturing. sorry to be so repetitive.

take care, jerry, you CAN navigate all this pain and fear with the right helpJerry,
Last edited by whatmeworry on February 9th, 2012, 10:56 am, edited 1 time in total.
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Re: 4 months into twitching, my update

Postby Silverbullet on February 9th, 2012, 10:57 am

jerry2 wrote:If there would be a way I would 100% know that fasciculations are NOT ALS and NOT from MS I think they would not bother me at all.


The problem is we cannot be sure 100% of anything in this life.... High anxiety produces an intolerance of uncertainty. The best tool at hand for you Jerry is CBT to look at the possibility of 'catastrophic misinterpretation; a CBT- psychological term used to described catastrophizing of body sensations and symptoms. That does not diminish the fact that you are going through a very real experience.

Very best to you, Martin
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Re: 4 months into twitching, my update

Postby jerry2 on February 9th, 2012, 2:07 pm

I know Marin what you want to say. I wanted to say I could not stand some doctor to tell me after EMG that I have 50:50 having ALS or BFS.
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Re: 4 months into twitching, my update

Postby Silverbullet on February 9th, 2012, 2:28 pm

Well if that's what they said that's f.u.c.king stupid and insensitive of them :(

Regards Martin
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Re: 4 months into twitching, my update

Postby jerry2 on February 9th, 2012, 2:38 pm

They didn't say it to me, but they could if I go. And yes, it is insensitive and they should check until they find what it is in that case.
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Re: 4 months into twitching, my update

Postby Silverbullet on February 9th, 2012, 2:47 pm

Sorry am I missing something, how do you know what they think ? Or might say?

Regards Martin
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Re: 4 months into twitching, my update

Postby jerry2 on February 9th, 2012, 4:43 pm

I don't know. I am explaining why I have no desire to go to EMG. They can find something wrong and have something suspected and I've had about 3 suspected ilnesses from doctors in the past and my nerves went haywire. I've had suspected glaucoma, suspected Chron and suspected Rheumatism. If the test can not for sure say I have something or not I don't want to go. Coloscopy proved 99.99% I don't have colon cancer. It was a relief. I believe I may have some wierd EMG that would make me panick again.
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Re: 4 months into twitching, my update

Postby Silverbullet on February 9th, 2012, 5:10 pm

OK! Well lets explore another possible way of looking at it. At the moment you are really anxious about something in your thoughts you might have. Would it not be better to unravel that uncertainty and have the truth. With the truth you can know what you are dealing with and plan accordingly. I am of the opinion if you were able to pluck up the courage and have your EMG. Firstly I feel you will gain a sense of control over the situation from making a decision and secondly i don't think it's going to show a great deal anyway. So a win win situation.

Regards Martin
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Re: 4 months into twitching, my update

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