EMG today

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EMG today

Postby tessa on March 22nd, 2012, 3:23 pm

I just returned from having my emg and ncv. All clear! diagnosis:bcfs. The neurologist performed the test himself and about half way through turned the monitor around and walked me through the whole process. He told me what he was looking at and hearing and also what would happen if something were "wrong". He told me he was 100% sure there was nothing to worry about and no need for follow-up. I feel completely relieved and ready to move on. I hope I can now let this go. Thanks to everyone for your kind words, of course you were all right!
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Re: EMG today

Postby bobajojo on March 22nd, 2012, 3:52 pm

Fantastic news Tessa! (can I say I told you so now? haha) Now please promise me you'll accept this result and use it to get back to being you. Its very common for people on this site (myself included back in the day) to continue to wonder if they have a serious condition even after their emg. This is an irrational thought. EMG's are very sensitive and after today's test, you can be assured that you have a benign condition. I'm so happy for you. Welcome to the club! -Matt
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Re: EMG today

Postby Shanny63 on March 22nd, 2012, 4:12 pm

yay fantastic news tessa, but like matt we new already that you were ok.... :D ...accept that its a benign condition and enjoy your life..reduce your stress levels and try and relax more...i know easier said than done...but congrats on the clean emg.....shanny
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Re: EMG today

Postby tessa on March 22nd, 2012, 6:06 pm

Thanks guys. I believe I will be able to accept this diagnosis and move on. Alot because of this forum and the people here. I have to say I have a great neuro muscular guy too. He was extremely reassuring and familiar with this site as well. He didn't sugarcoat anything and told me I will probably deal with this the rest of my life but it will NOT turn into anything sinister. I feel ready to tackle this head-on and win like so many of you have.
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Re: EMG today

Postby Benita on May 24th, 2012, 10:46 am

Hello everybody :)
I'm new on this forum, and I'm happy to discover it. I am a female student from Slovenia, and there is nothing written in slovenian language about bfs. Actually no confirmed medical informations about this condition, but someone on MS forum suggested us to find informations about BFS on foreign forums.
My problems started in a day or two with tingling and some light muscle twitching. Plus a strange feeling in one of my feet (like being deaf). I became being panic, the syphtoms got even worse and I went to neurologist. He did some neurological tests, they were all normal, just one of my feet didn't move when doing the babinski test (the other one was okay). Neurologist (actually a neurology specialisation student) told me, that according to my sensations, what I say, it could be MS, so he suggested me brain and spine MRI, and in case to be positive I shoud visit the Ms specialist. I can't describe how my life got ruined that day, I was totally desperate. So I payed by myself my MRI three days after that. It was negative, although I was sure it'll be positive. And two day later, I did another one on my health insurance. Negative again. I was soo happy but the fear for MS stayed. I didn't do the lumbal punction, because no one told me to (here you have the right to do it only if there are changes in MRI). But my general practitioner was surprised when I told her about the MRI. she was sure I have MS because it is so common here (sadly, I know many people that suffer for it). Then I made some thyroid hormon tests, tests for minerals- everything okay. Then she ordered me to do the EMG, to exclude MS for sure. But when I called the doctor to order myself to do the examination, he said it has no point, if it were Ms then the EMG will be positive in years after the start, that now it is too soon to rely on the test. Anyway I wanted to go, so he ordered me in the end of august (that will be 5 months after the beginning of the symthoms). It's all I can do for now.
For almost two months now I am desperately searching for more informations about my symptoms and all the ways led me to multiple sclerosis. I got totally desperate, I also read some forums that peole say MRI is 90% reliable. So I got scary thoughts I am in the 10%, maybe I did the test too soon (three days after the beginnig of the sympthoms) and so on. And I am doing the wrong thing all the time- reading and readnig about MS, so I find every day new symptoms). The only thing that is permanent are the twitching. Everyday, everywhere... Mostly unpainful. Now after reading so much I got some strange sensations on the left of my face, in my eye, I have headaches... If I say in one word- I feel like going crazy... Now, as I've read some of your stories I calmed a bit. There actually theoretically can be something else and not that awful other one... I pray to God every day that my condition is a benign thing...
In august I'll do my EMG and I am sure I'll pay for another MRI in a year or two. That's my story...
And I have a question about EMG-do you maybe know, is it true it can be false negative if making the test too soon? In what time after the beginning of the symptoms you did the test? Thanks for listeing&answers.
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Re: EMG today

Postby Yuliasir on May 25th, 2012, 1:08 am

Hi Benita,
I was partly in your shoes - I mean I am from Ukraine and there is nothing to read about BFS too in Russian or Ukrainian internet.

First of all, you should know that even if you have MS - it is still not a death sentence, especially for now. I also know several MS people in Russia, and all of them are VERY active (one is Mrs. Yasina - she is a well known politician, and another lady who has two children (one of them is severly disabled due to rarest genetic anomaly) and a prominent fighter for minority rights.
There are old means to fight it, and there are new antibody based treatments right on the way. Please also remember that women usually have far better prognosis due to specific nature of our immune system.

Actually there would not be any harm to do ENMG, but because no one of the tests is conclusive so far (unless there would not be clearly seen and very specific leisons on MRI) you still would be in anxiety for some time.
So I believe you must first look for your real enemy - for anxiety. Get yourself busy with fighting this. Being scared of severe disease is not a load you should bear alone. No matter whether you have MS or just BFS - you are in grey zone - so my suggestion and advice would be to find and pay for good therapist to speak about your fears. For me it helped a lot to speak with trained person about how this fear is ruining and what I may to do to live with it.
Looks like you have already a kind of migraines due to stress, so please take care about this. Anyway this is a first step to improve quality of life in any case.


Answering your questions - I did my ENMG in about a month after I started to twitch all over the body, but I never did and MRI (no need to) since my ENMG was clean and neuro exam was clean too. And I knew one young lady of about your age - when she had her intermittent inability to walk and speak normally - in a few days after that on her MRI there were MS leisons and she was diagnosed and treated and as far as I know she still lives quite well. So I mean if you have symptomes -and if they are related to MS - the leisons usually would be evident.

Wish you good relief of your fears
Regards
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Re: EMG today

Postby Benita on May 25th, 2012, 12:41 pm

Dear yulia, thanks for your encouraging words. It really means a lot to me- just hoping you're not ill usually is not enough. I'll really try to find a specialist just to talk to about the matters of life and the changes that a potential illnes could bring. do you suggest psychiatrist or psychologist, social worker or sth. else?
I'd be a difficult thing to handle- being young, full of plans, facing the fact you can't make them true or at least live a free life (what you've been fighting for all the time since now, when the syptoms came.) I am desperate today, because in the evening I got an awful eye pain (on my left), I was affraid I'll loose my vision, but luckily in the morning it was lighter and now is almost gone. Of course I got another thing more to worry about- optical neurutus- typical for MS : (. And I am down with my nerves- once again. I'm going to see my neurologist in about a month, I don't know if I'll be alive till that time, to beg him to order me some extra tests- like VEP and SEP. They are totally too expensive to pay on my own. I feel weak, my I got twitches again, and what scares me more- more painful real cramps. Maybe I don't belong here any more, because I haven't got all the chances of being MS excluded- but I feel more comfortable here than on MS forum feeling down and cheching your ms symtoms... I hope everything will be allright and most of all, I wish myself and you all to be strong... Nerves can do many bad things in your minds. Thanks again for your support : )
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Re: EMG today

Postby Yuliasir on May 25th, 2012, 1:18 pm

Hi Benita,
first I would say that I too experience unilateral sharp pains inside my eyes sinse I am in BFS (tomorrow it would be 7 month already :))) and actually one of the first things I did on the onset, I went to ophtalmologist to check if my optical nerves are ok. looks like those pains are also part of BFS picture.
But I am 42 and MS is less possible for me, however I was fearing of another S-word disease:)))) So, I would like to say those pains might be just due to strain because I feel them ususally at the end of a day, and my day means 10-12 hours of typing and reading (I am a translator). Those pains are very umpleasant but still seem do not harm my vision. Should you really have optical neuritis, it would be much veird things - not only pains, but partial loss of vision, blurred vision, scotomas (dark or light spots in the vision field wich stay steady for hours or days). Most ptobably what do you have for now is a kind of migraine, migraine is often causes pain within the eye. And migraine is a condition closely related and provoked by stress. My 16 years old daughter started to have drastic ophtalmic migraines with partial loss of vision only because of high pressure in her last year in the school and first year in the University. She is almost 19 now and feels much better after inital pressure released.
And migraine might be accompnaied by partial fascial numbess too (very frequent kind of 'aura'), and sometimes it doesn not involve those intolerable headaches as it is assumed but just a mild ones.

as for cramps I can tell you that I am crampy for years, far before BFS (and there were certain periods when I barely could spread my legs aside not feeling crampy in deep tigh muscles. it was so unpleasant for the family life :) - and I know that crampies usually increase with anxiety too. mainly because you are tensed and your fine capillaries are closed due to action of stress hormones in order to supply your brains with more blood and oxygene, so your muscles, especially legs, have less blood and less oxygen. Usually this causes muscle pains and crampies.

I personally would suggest any trained psychologist you could find and trust to. If you have already a pshychiatris you trust to - it might be useful too however they are not usually specifically trained for that kind of support. Physcologists and social workers are more "suitable' on my point of view however psychiatrist might be also useful in terms of proper medical help because I personally had to take rexetine for 3 month in order to overcome my next anxiety flareup...

You know, even being 42 is still scary to feel like there is something bad inside your body...but for youngsters it is of course a huge drama. However I believe you have a lot of chances for good outcome, I understand what it mean for you.
Keep on, and you also could find a lot of support here.
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Re: EMG today

Postby Benita on May 26th, 2012, 4:07 am

Hi Yulia,
I can't tell you how much I appreciate your calimg words and support. My mother (she is my supporter in these difficult moments) tells me all the time I exaggerate, but I just can't relax and act I'm fine if I'm not. The pain in my eye has disappeard in a few hours and it didn't leave obvious damage, except terrible fear of waking one day of with blindness (as usually happens when having neuritis). I feel sorry to put myself too much stress last two years (problems in family plus I took two studies at the same time with the belief it will distract me from worrying for other things). Now I feel the consequences I think...
What matters the age and being ill I strictly claim that health and the quality of live (without limitations) is a right for everyone, we all want and deserve it. It doesent matter if you have 90 years or 5. It's so sad the incurable diseases exist. I hope the medicine will one day find out how to cure also at this moment incurable ones... It's interesting how they know so many things, they fly into space, but can't find the medicine for some of so common diseses ...
I'll report what was actually wrong with me when I find out for sure.
Thanks again and stay happy and heathy : )
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