Even rational Docs get worried

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby CJH on February 18th, 2006, 1:11 pm

Help having a bad day! Anxious about possible weakness in left hand. So far twitiching three months. Physician so knowledgable..so scared! This weekend can't shake the impression that my left hand is weak, although it manages to do most things. It has not been an area of twitiching much and I think that it was one of the EMG stab sites one mnth ago. Does anyone else have moments like this? What can I do

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Postby klag on February 18th, 2006, 1:26 pm

mark just answered one of my posts and i feel i agree with him. 1st off its my left leg and weakness that bothers me. But i am going to take his advice and seek phyc help in the form of counciling. I am not dealing with this well and my wife and uncle conspired last night to set me up on monday ( he just told me) to see a counciler. you might need this alos or maybe not? just a thought dont take this the wrong way. it is amazing that when a malfunction of the body can make the mind and body disrupt each other even more. dont know if this helps but i hope so. :D best wishes :) klag
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Postby Mark S on February 18th, 2006, 3:23 pm

cjh,

Everyone here has these moments. Everyone experiences the fear and uncertainty. I have been coping with this for nearly one year now - March 19 is my 1 year anniversary. I am fine and, in fact, just lifted weights today but my body is in some sort of electrical meltdown from constant calf and feet twitching to palatal myoclonus. Head to toe I have twitching and subtle jerks.

In all of that time I finally landed on a base that really makes my days tolerable. That is, I have come to realize that I have no control. I want to have it but in the end I do not. You do not. So we must stay in the present moment and also, in many of our cases, start to deeply examine the obsessional tendencies of this syndrome. Some anxiety is rushing in you and it rushes in me - you are looking at your hand and worrying about it to escape another issue.

The keys to this are twofold - one is that you must try to stay in the present moment. Worrying about being in a wheelchair and all of this is a projection into an uncertain future. You are more likely to be hit by a bus but you don't worry about it. Also, you must lose control - don't fight the twitches and symptoms - there is great strength in yielding. You are not in control - accept that and look deeply into the space where everything is under control.

I also highly recommend seeing a psychiatrist. The guy I am seeing saved my life last April and May because I was convinced I had als and would be dead in short order. I didn't want to live. He helped me with both medication and talk therapy - this combined with spiritual direction moved me past those dark times.

I am convinced I'll be twitching forever but it has been both a tremendous curse and a fantastic blessing.

You are welcome to pm me and/or I will give you my email.

Be at peace,
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Postby dave y on February 18th, 2006, 4:05 pm

CJH,

My neuro, a teaching neuro at Indiana University school of medicine, who got into neurology because he got BFS while in med school, said to me "sometimes you may feel a little weakness with this stuff".

I often get it.

Really, don't sweat the small stuff. Read the Mayo paper again. It's the gold standard, even according to him.
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Postby klag on February 20th, 2006, 1:17 pm

cjh i have a question for u. my new gp gave me a a1c test. other previous tests showed nothing. the a1c test showed i was at 6.2%, slightly over the standart 6.1%. he gave me pioglitazone hcl. i am confused as i dont think i have type 2 diabetis or could it be prediabites. I have it on both sides of my family. I know u dont want to talk against any proffesional colleges and i am not your patient. i am just curious if "off the record"u think that the drugs are necessary. my blood glucose has jumped around during the day but i was told that stress and cortisone can affect your sugar. the highest i ever recorded was 11.8 mmol/l once in almost 3 weeks 2 hrs after supper. I wont challenge my gp i am just curious what your thoughts are. off the record of course. thanks klag
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Second Neuro - a happy ending?

Postby CJH on February 23rd, 2006, 3:08 pm

Second neuro opinion from specialist neuro in immune neuro dysfunction.

No weakness. Normal power all areas. Muliplte twitches seen, demonstrated more twitches after contraction and exercise. Diagnosed as peripheral nerve hyperexcitability. Took bucket of blood for detailed autoantibody work up. Says although very very unlikely I shoudl have a CT chest to rule out a benign tumour called a thymoma.

Feels brilliant and cloud that had been lifting with all your support is currently out of the way and blueskies are here again

Thanks to all your help
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Postby Wolverine on February 23rd, 2006, 3:13 pm

Good to hear. Thanks for the update.
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Postby iclavdivs on February 23rd, 2006, 3:31 pm

CJH

:D :D :D So glad you went and had it properly checked out. I bet you're so glad you went. Peace of mind is priceless isn't it? - Enjoy your blue skies.
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Re: Second Neuro - a happy ending?

Postby ryanbabs on February 23rd, 2006, 9:37 pm

CJH wrote:Second neuro opinion from specialist neuro in immune neuro dysfunction.

No weakness. Normal power all areas. Muliplte twitches seen, demonstrated more twitches after contraction and exercise. Diagnosed as peripheral nerve hyperexcitability. Took bucket of blood for detailed autoantibody work up. Says although very very unlikely I shoudl have a CT chest to rule out a benign tumour called a thymoma.

Feels brilliant and cloud that had been lifting with all your support is currently out of the way and blueskies are here again

Thanks to all your help


I tried to get my doctor to check my thymoma...they scheduled it, but my insurance denied it..they better hope there is really nothing there...
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the NHS

Postby CJH on February 24th, 2006, 4:52 am

Although many bricks are thrown at the NHS I am very glad that care in the UK is still "free at the point of care and according to need".

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Postby klag on February 24th, 2006, 7:00 am

cjh congradulation on your good news. are they now going to try and find out what pnh u have or is it just a general term and they leave it at that. :D
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Postby Taylor on February 24th, 2006, 9:32 am

Ryanbabs,

My insurance company initially denied my neuro's request for a CT to rule out thymoma also. They resubmitted the request once again the next day and it was approved. I have excellent medical insurance and was quite surprised by the initial denial.

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CT result

Postby CJH on March 6th, 2006, 12:22 pm

CT scan with contrast of my chest was normal. So no thymoma as cause of PNHE/BFS.

Just thought I would update everyone. Twitches present but becoming part of the scenery. Wife has named them twitchlings to give them a sort of warmer, family member type of name. Does anyone have any other fun names for the little darlings??

CJH :P
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Postby ryanbabs on March 6th, 2006, 1:20 pm

...yes I do, but I cannot say that here...
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Postby Wolverine on March 6th, 2006, 2:18 pm

ryanbabs,
That is funny because I was going to reply the same thing. When I read yours I just laughed. :lol: Us twitchers think alike.
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