It all started three months ago.

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It all started three months ago.

Postby Christina91013 on January 16th, 2014, 10:48 am

The last three months have truly been the most trying and darkest times of my life. I began twitching on October 9, 2013. I woke up in the middle of the night to my right calf twitching and, to a lesser extent, my left as well. I did the usual initial investigation on my own and feared the worst. By the next day, my twitching had become widespread throughout my body but seemed to be, and still is, concentrated to my right side. Since then, I have twitched everywhere on my body and, yes, even my tongue. I also have the mild cramping and dull pain that comes with BCFS. I have had a dull pain in my upper right arm for two months. The pain in my upper arm is not consistent but seems to increase when I engage my muscle. I cramp in my feet, my claves, my hands, my neck. I am 43 which makes this a little more concerning.

My initial blood work performed by the general practitioner was all normal and I was sent with a referral to a neurologist. Neurologist number one did a clinical (strength test) and told me I was fine. She told me that twitching was just twitching and it was nothing more than that. She seemed a little dismissive of my concerns so I sought out another neurologist after a couple weeks. Neurologist number two seemed more concerned. She did a clinical (strength test) and found no weakness but scheduled an EMG the next day with the neuromuscular specialist. One month into twitching I had my EMG performed and it was clean except he saw one fasciculation. The specialist did tell my that by the time twitching presents, disease would be in one's system for six to nine months prior to the presentation of symptoms. Meaning, the EMG should reveal results. I do have a follow up visit scheduled for the end of February for my next EMG and I am terrified. I am trying to listen to the reason in my doctor's words, but I am really quite concerned for my next exam.

If not for my faith, my husband, and this forum, I think I would have lost the ability to function weeks ago. While I am grateful for my initial results, I am very anxious about what the follow up holds in February as my symptoms seemed to have progressed. I contacted neurologist number two once the cramping increased and she did inform me that cramping was totally normal in this situation and that they were very confident that they diagnosed me properly. I will add, about a week prior to the onset of twitching I had just gotten over a cold and I was under a lot of stress due to finals. Yes, I finally finished my bachelors degree at the age of 43. I also run a business and have a step daughter who thinks I am the devil. I am hopeful that this is stress related and not something more sinister.

Thank you all for contributing to this forum; it's good to know there is support from others going through the same situation.

Christina
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Re: It all started three months ago.

Postby 6t5frlane on January 16th, 2014, 10:52 am

You sound like the vast majority here. Classic BFS. Everyone needs reassurance. listen to the DR. Calm down you will be fine
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Re: It all started three months ago.

Postby emmie.s on January 16th, 2014, 11:06 am

Welcome to the board. Your story is that of classic BFS and has been told 100s of times here. Trust the EMG, you're fine.
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Re: It all started three months ago.

Postby Christina91013 on January 16th, 2014, 11:38 am

Thank you for your encouraging words. These last few months have been tense times. It's such a peculiar thing to be going along in life, doing my thing, being productive, and have something like this stop me in my tracks. I miss not being myself. This twitching has not stopped since it started back in October and has gotten worse. I just thank God everyday I get out of bed and nothing else has happened.
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Re: It all started three months ago.

Postby mwagner on January 16th, 2014, 11:47 am

I was 43 when this all started. Trust me, 40s are still very rare for the onset of <you know what>. Someone actually just posted something with stats and it's extremely rare. You probably saw something in google that says you're more at risk if you're over 40. Well, that's the case for just about anything (which is a really sucky part of turning 40), but look up the stats that were posted. You'll find some relief in them. This is typically a disease of people in their sixties or seventies.

You are in the same boat as I was when this started 2.5 years ago. Your EMG says it all. You're fine. Actually neuro #1 was probably spot on, and there was no need for neuro #2 and an EMG. And very likely you don't need a follow-up EMG.

You really need to take a deep breath and realize you're okay. Your next EMG will be fine.
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Re: It all started three months ago.

Postby Little Lost on January 16th, 2014, 1:23 pm

Hi Christina,

Sorry to hear about the time you are having. I hope the forum provides some peace and some good info. It has saved my sanity sop many times and I have been reading here for over 2 years.

I am the one that posted the stats recently. You can read the full article to get more info, but it was on;ly when I put down the actual numbers that I saw how rare ALS is and how over represented it is in newspapers, press, TV soaps etc.

So you are 43

Age 40-44 24 men out of 1,693,896 population in that age group were registered in a 2 year period as having ALS. Incidence rate of 1.4 in 100,000
Just 14 woman in your age band out of 1,710,534 woman developed ALS in 2 year period incidence of 0.8 per 100,000. In total out of over 3.4 million people aged 40-44 on;y 38 were diagnosed with ALS.

Yes it increases with age, but even people in their 70.s it is rare disease.

The board members have good knowledge both on the anatomy and physiology of nerve and muscle diseases, but also on the psyhcology of it all. You are in good company, and importantly you are not alone.

Helen x
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Re: It all started three months ago.

Postby Christina91013 on January 16th, 2014, 5:59 pm

Thank you for the information. It is interesting to see the breakdown by age and it helps to put things into perspective. In all of my internet searches, I was never able to find anything that did that. Thank you everyone for your input.
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Re: It all started three months ago.

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