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Old 07-28-2009, 09:38 AM   #1 (permalink)
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Default Strange Symptoms

Big Hello to every one out there and a big thank you for all the wise words that have lent help to so many.

I am here for some advice.

I was in this neck of the woods a year ago when I began to experience muscle twitching, extreme fatigue, weakness and exercise intolerance last September. Back then I was in the UK and sent to a Neuro who did some clinical weakness tests, said it was probably nothing and sent me for an MRI of my head which he said was also clean (I have never seen it). He told me the sympptoms would probably go away.

I wasnt very impressed and spent the next 2-3 months feeling really bad and with only more severe twitching. But I moved to Holland to live with my girlfriend and started work here and in the end my symptoms did go away. So far so happy except I was no longer able to do my sports. I could jog lightly but when it came to sprinting (what I am good at) my left calf was just not strong enough anymore.

Anyway I was determined to fix this and took to the gym and protein. 3 weeks of hard gym work and a few failed track sessions and guess what. I am ill again after about a 6mont break from it. Only this time I feel worse, weakness is worse, twitching and aching in my muscles is now in both calves, my left and right arms (shoulders and biceps now) and lower back and I now have a twitching in my tongue. I am constantly tired. When I sleep I suffer nightmares and tend to wake with really severe cramping and twitching in hands, feet and calves and my face feels very odd, like it has been numbed by a dentist or something. This is terrifying but weirdly during the day my symptoms are different bar the twitching and fatigue; I feel really nauseus and queezy, I am weak and find it difficult to walk without feeling like passing out.

I understand that this is not a diagnosis centre and that my best route is to see a neuro but my interest was in knowing at what stage should I be saying I need to see someone urgently? I have a big fear that I got lucky with a relapse last time and that now it (whatever this is) is progressing faster and unlikely to stop again. Plus I think I caused it myself as it kicked in about 3 days after I started to take an amino acid called L-Lysene, something which I have now packed in and will never, along with protein supplements, be touching again...

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Old 07-28-2009, 11:25 AM   #2 (permalink)
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Tom, you definitely have something going on but it is extremely unlikely to be ALS. With ALS it does not go away and then come back, it stays and only gets worse. I would advise you to see a doctor and find out what is happening.
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Old 07-28-2009, 12:42 PM   #3 (permalink)
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Tom, I agree absolutely with Joel ... get thee to a doctor.

Doesn't sound anything like ALS, but those are some mighty unpleasant symptoms to try to live with.

Good luck on a quick dx and treatment!
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Old 07-28-2009, 12:46 PM   #4 (permalink)
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I'm with Joel and Beth - It's time for another doctor.

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Old 07-28-2009, 05:50 PM   #5 (permalink)
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Tom~

I dont have alot of advice to give, but I can empathize with you. I think that my strongest sx is exercise intolerance. I have all the usual suspects at play (twitching, muscle jerking and aching, weakness, sore muscles..etc) and when I was cleared of ALS at an ALS center I was determined to get on with things. I started doing everything I had before and tried doing my tennis again and just everything a busy mom of 3 would do. After 3-4 weeks hit a wall as well. I got worse, everything. I fond that I cant push myself like that. I take it easier and swim a few times a week, and allocate my strength out during the week by planning what I will do with the kids or clean or whatever. I always feel better on Mondays because my husband is around on the weekends to help. If I do alot one day, then I 'try' to rest the next. I go to a homeopath chiropractor a few days a week to rub out my muscles and adjust my spine. My best advice is to take it slow and easy. It is hard to accept or get use not being able to do all that you use to AND no have answer as to why! I miss working out and playing tennis. I use to play competitive tennis, and tried after a year and I felt like I had weights on my legs and my hand was sore and cramping for week. Not worth it. Go see a new doc and take it from there.

Best wishes to you!

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Old 07-29-2009, 09:19 AM   #6 (permalink)
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Hi Joel, Beth, Zaphoon and April thank you all for the wise words.

I have been to a Neuro today who did some clinical weakness tests and said it could be BFS and it could also be alot of other things... She did alot of blood work and scheduled me for an EMG on 7th September.

Got some waiting and mind games to get over but I am always truly thankful for the strength of the words of the people who post here. Thank you all and April I understand what you are saying and I know where you are coming from; I agree that I need to take it easy and be alot more thankful for what I have whether it be family (of which you have a beautiful one by the way) or loved ones or my own abilities instead of pushing myself too hard.

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