Life-Saving Web Site: My Story

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T

TheShade

New member
Hello everyone, this web site is an absolute life saver. I have been reading here almost everyday since I first found it this past Christmas. Well, here is my story. I am 42 years old with a wife and 2 beautiful kids. I first started having severe muscle aches and fatigue at the end of last summer. After a few days I saw my Dr. thinking that I may have contracted Lyme. He ordered the usual blood tests. A week later the Lyme came back negative but I was informed that I had a borderline positive ANA antibodies. He referred me to a Rheumatologist and I had to wait 5 weeks for the appointment. After doing internet research I initially thought I could have Rheumatoid arthritis or some other autoimmune disease. After seeing the Rheumy, she ran a series of tests and told me to come back in 2 weeks. By now it was late December and before my follow-up I developed many, many twitches on my calfs and in the arches of my feet. At the follow-up all the blood tests came back negative, and she stated that the ANA was "equivical" not positive and not to worry about that. When I showed her the twitches she recommended that I get a referral to a neurologist. This is when I started to really get worried, since like many others on this forum I researched the web, what a mistake. I was experiencing the fasciculations 24/7 on my calfs and feet and sporadically everywhere else. Now I have never had hypochondriac tendencies, I'd be lucky if I saw my doc once every 2 years for a physical. I was imagining the worst, and trying to plan how my wife could raise the kids by herself. It was a couple of days later that I found this site. I was so relieved since I was fairly sure that I was not experiencing any real weakness. But there was still doubt. To make a long story short, after another 6 weeks I finally saw the neurologist. He gave me the full exam and performed the EMG and nerve conduction tests right in his office. Thankfully they were clean. That is when he first mentioned benign fasciculations. He then scheduled me for an MRI to check for MS and nerve entrapment. Thankfully today I received the "all normal". I am so relieved, I almost feel like a new person, except for the aches / fatigue / migrating pains / exercise intolerance and of course fasciculations I have. I am determined not to let this get the best of me, after all, 10 weeks ago when I was expecting the worst I would have readily accepted this alternative. I have always been an active runner and although I haven't run in 6 months, or done much of anything for that matter, I am slowly trying to increase my endurance and keep the aches and fatigue from getting the best of me. I am also determined to keep my fears at bay, and this forum is the best thing for that. And lastly, thanks to every one of you out there who contribute your time to this forum. It has provided much comfort over the past several months. Sorry for the long post, but I had to get this off of my chest.

Thanks for listening,

Damian
 
damian,

I'm so glad that you got the all clear from your dr. The suspense and worry is really the worst part of this crap. Good luck to you, and try to get busy living your normal life again.

Again, congrats!

Gary
 
Damian,

Thanks for sharing your experience with the rest of us! It always helps to share with others, and is comforting to hear your own story, especially when told by another.

As you have seen, many of us have also gone through unexplained muscular and nerve symptoms, which usually don't serve as signs of any serious physical conditions. That does not mean that there is not something going on in our bodies, it just means that our symptoms are not familiar and are scary...also they have not been advertised in commercials on TV...with quick fix products to cure them.

Our nervous systems can be just as sensitive to the insult of a minor virus as they can to a traumatic injury, such as a car accident. Often, minor irritations to our central nervous system (brain and spinal cord) can manifest by way of hyperactivity or heightened sensitivity, causing strange, inexplicable surges of excitement...including to the motor and sensory neurons controlling our muscles...the end result being these twitches and strange sensations. These are not signals of doom, although they certainly can be very long-lasting and annoying, not to mention disturbing, particularly if the only research you can find on the web points to such grim conclusions such as ALS and other extremely rare neurological diseases.

I suspect, and strongly hope, that forums such as this will ensure that muscle twitches will soon be as widely advertised by pharmaceutical companies... at least to the degree that migraines and PMS are now.

Regards and best wishes,
Karen :)
 
Karen:

Your last comment made me laugh.
I can see the commercials now.....The camera fades in on a group of us twitchers (hopefully highly paid) the announcer says "Have you been twitching like mad for years and everyone, but you, thinks you are crazy...Well ask your Dr. about "Twitchex"....
:D)

Have a Great Day !!
 
Damian

I am a new member and have been twitching since mid January. I work in Physical Therapy at a hospital and after a month I went to the neuro books, found ALS then went to a couple of ALS sites online. I read how they noticed fasculations first then had weakness after. I was convinced I had ALS and my biggest worry was for my wife and daughter. My wife has a chronic illness and it would be near impossible for her to run the house. My daughter is 13 and it would be difficult for her to help care for two parents with severe disease. I began making plans either to sell the house and or make handicapped accessible depending on how fast I thought the disease would progress. To make a long story short I got a EMG with a neuro last week which was negative and he mentioned bfs. Finally found this web site last week I have the gamut of symptoms including widespread twitching occassional arm and shoulder weakness,tremors and generalised fatigue. I do not remember any significant cold or flu this Year.(Did get the flu shot) . I am very glad this web site is here. It is a life saver.

Take care.

TerryG
 
Terry,

I know exactly where you have been. I too thought that I would have to sell our house to find a place more handicapped friendly. It's amazing the places where our minds can take us to when we let it.

The fatigue and aches bother me much more than the twitching, that I can live with. It is definately difficult to remain as physically active as I had been. I have already noticed a few extra pounds being put on.

At least now our fears for the worst should be gone and we can enjoy spending times with our families and seeing to their needs.

Regards,
 
I have a suggestion for your exercise activity. I know that if you have been a runner it is difficult to give it up. When my knees finally made it an imperative, I started doing brisk walking along with using a cross trainer. I've found that even when I'm feeling fatigued, I can start walking, and the fatigue seems to get better as I go. I doubt that I'd be able to run under those circumstances even if my knees allowed, but with walking you just concentrate on "putting one foot in front of another" and keep on going. I've found that after a half mile or so I start to feel better, and by the one mile mark I usually feel pretty good [except for my feet, but that's another story we've discussed].
At least it works for me. Good luck.
 
Rex,

Thanks for the suggestions. I do try to do 20 - 30 minutes, 3 to 4 times a week on the Nordic Track, although it has been difficult at times. I can maintain the duration but just nowhere near the aggressiveness I was once accustomed to. I also just picked up a good Yoga DVD which I am going to try with my wife starting this weekend. I've never done it before and I'm hoping the stretching will do me good. Someday...I would like to do another marathon. I'm 42 now and my knees are still in pretty good shape, so I still have time.

Regards,
 

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