Hello everybody,I'm a 29 year old male from Belgium, sorry if I make some mistakes in English:My storyAugust: pain in left leg, a month and went away, september: pain in right leg.20th october 2007: start twitchings - after reading about ALS (so I think)I went to my doctor the 22the oct and I went the same day to a neuro. Did EMG and clincal test: everything ok, beninge fasc.But I still wasn't convinced: so 1th november I went to anonther 2nd neuro(did EMG): same result. 7th Nov. 3rd neurologist (did EMG- same result)Then 15th November I went to a acadamic hospital in Antwerp: did clinical and said nothing to worry about5 th December went to the acadamec hospital of Leuven, professor Robberecht (what I've read a specialist in ALS research): his assistent did clinical and following dag (6th dec) and EMG, everything ok, only fasciculations.Now the last few months I still didn't believe that nothing was wrong - because of mr google and all the als-sites... Every week I send emails to the hosptial in Leuven with questions, because everyday I feel something else: pain in legs, today pain in wrist and hands then pain in shoulder. I also had some kind of electric feelings and buzzing in my body. Calves are twitching 24/7. I also had an MRI spine (? correct word?) the 28th november and a MRI brain 11th dec: all ok.The doctors from Leuven even suggested to see a psychologist , so I do, but still I'm terrified that they are wrong. Twitching today (24th march 08) 5 months and 4 days. In case of ALS should the EMG had seen something on 6 weeks of twitching?? I have pain in my wrist and hand but don't think weakness because I still can pick up weight.The 6th Feb I went to Antwerp to a neurologist who did a clinical, only reflexes that were normal to 'a little quicker', but they say it's normal for tall, slim people of my ageCan I be sure now it's not ALS or ??? Can someone help me? Give me advice?Thanks for your adviceBart
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Young Male from Belgium - Medical Concerns
- Thread starter BartOne
- Start date
Hey bart, sorry you are having such a hard time today. I have been twitching for almsot 7 months and I have lots of muscle pains in my shoulders and arms. Just had a CPK test done and it is normal. I have autoimmune thyroid disease ...Hashimotos and my doc thinks most of my symptoms are related to that, but I have had much anxiety over the symptoms too.In your case, you have been checked and rechecked. I think you have to believe your doctors. They DO NOT feel you have **S. I think we all get caught up in this twitch anxiety twitch cycle. And then we get tense and then our muscles hurt and on and on we go.I am brand new here too...but that is my take on things.Best regards,Linda
Bart,Welcome. I'm sorry this has you so upset but what you're dealing with is extreme anxiety, NOT ALS. Yes, one of your many EMGs would have picked something up. IF this was ALS, after the twitching started, an EMG would "pick up" the signs of NMD, regardless of how long you had been twitching. Likewise, EMGs can detect NMD-related abnormalities even in asymptomatic limbs.You had 4 (maybe more, I lost count) EMGs--all clean! Good clinical exams! You are golden! Pain is NOT a symptom related to ALS. You say you have no weakness; my neuro said directly that ALS is a disease of weakness. You've been twitching a few weeks less than I; no weakness, no wasting, clean EMGs, good clinical exams--you have BFS. And extreme anxiety.Continue to work with a psychologist. I know the anxiety can be crippling (we've all been there and some of us still find ourselves there from time to time). But with so many good exams and tests and no other REAL ALS symptoms, you are OK. This site is a valuable resource and a great source of comfort as well and it will help you can get through this. Just remember--what you have is benign: and you have the tests to prove it!Mark
Hi Linda,Thanks for your answer. It's true I really live in constnat anxiety. **S is in my mind all the time. The only thing I can think about is dieing. I always think that it wasn't clear with me , are the signs not strong enough. Life is really hard at the moment, I just want to be 'normal' again.GreetzBart
Hey Mark, I have read several of your posts. Seems you have been twitching about as long as I have? Sept. 2007? Have you found anything that helps you at all? I have been taking magnesium and B vitamins and have seen an improvement. I am about 80% better than when I started. Just curious, what your take is on this annoying condition?Linda
Hi MarkThank you for your answer, It really means a lot to me.Indeed I had 4 EMG's, 2 MRI, 2 complete blood tests (even urine and stuff), check up of the vains ...(all when I was twitching for 1.5 month): all OkBut still can't give it a place, I'm so glad I found this site today because untill today I only found sites full of **S stories. Terrible. At the moment I don't even recognize myself, normally I'm a person that not really worries about health things, normally if the doctor says i'm fine I believe them, but in this case... I think i've read to much 'bad' information. I'm glad that you say that the EMG would have picked up a sign even in early stage. My life is so 'on-hold' at the moment.I hope by reading all of the other stories I can convice myself that nothing is really wrong!Thanks Mark, I wish you all the bestBart
Bart, I think the key is in the last line you wrote to Mark about convincing yourself you are ok. I think that is what many of us need to do. This **S can become an obsession and as my husband says," if you are convinced you have it, you may as well really have it, because it ruins your life anyway." That hit home for me and I know he is right! We can't give these tiwtches that much power!Linda
Indeed Linda, thats what all my friends say too. I'm destroying my life. But it's so hard to enjoy something when you have conviced yourself that you have **S. I don't dare to book a vacation, buy something new and so on... I really hope I can accept that it's BFS and continue with really living again! I'm glad I found people with the same 'problem'.Bart
Aww Bart, you are making me sad. You absolutely need to book that vacation or buy something new for yourself. Are you taking anything for the anxiety? Are you taking anything for the twitches?I am not suggesting I don't go to the dark side with my thoughts sometimes, but I try not to stay there. That is the anxiety that has a grip on you.Hang in there.Linda
Bart, I take magensium and Vit B complex and I think it has helped some. I have read it can take a full year of magnesium supplements to help on the cellular level that many think is necessary. You are a young man. **S is typically a disease of older people. But, I do understand the grip this BFS. Have your tried relaxation techniques or meditation? I am going to try that next myself. This is a journey we are all on and I am thankful we have each other for support.Linda
Linda,All my life I've been a nervous type of person, have difficulties to relax. for example , it's an effort for me to watch an entire movie without walking around or to do other things. I tried to do meditation a couple of times, but I stopped because of 'what's the use if I'm going to die' ,you know. I really saw myself as a normal person, well educated, good job, good friends, good relationship. And then I'm thinking, maybe it was all to perfect, you know. It's really funny what I started to think why I should have **S. But, I'm very glad I found people here with the same things and Linda, I thank you that you want to listen to my story. Bart
jokercrisp
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I'm 28 and went through the same SCARES!! Believe me!! In fact, I started with my symptoms right around your time also(1st of OCT)!! Its been crazy and scary!! But I'm sure as time wears on and with all your reassurance from multiple resources and tests, sounds like youre fine, or at least its nothing sinister!! I wondered the same thing during my emg, all the "what ifs" I've noticed that eating right, no caffeine and getting away from the computer and back out into the world to workout and be social have all helped ALOT.Good Luck,B
Hi B,Thanks for your answer. I'm still very scared, but I hope I will be convinced soon..5 months without weakness, should be clear in a progressive disease, so says the neurologist.I hope we all can get our lives back on track and get rid of the twitchings, cramps, pains, buzzing ,...Bart
Wow Bart....poor thing. You are 1110% ok. Its mental right now. You've had MORE than enough test, I first started twitching around Oct 06. It stopped I think in Feb07. Went away alllll spring and summer and hit me again three and a half months ago. From Docs upon Docs and what I've been told...You know pretty quickly w/ this disease if its ***. You would be the FIRST PERSON IN THE WORLD to have a CLEAN EMG, how about 4 CLEAN EMG's and who know's HOW MANY clinical exams to actually have had *** and not BFS or something other benign. You are dwelling on the impossible. What people dont understand is the "clinical" test is all you need to rule OUT ALS...EMG's are used to RULE in ALS or "other" conditions when its expected . THAT BEING SAID THO...if a doc offers a EMG that is not b/c you HAVE ALS...he may be simply "easing your mind", "looking for other non sinister things) Or perhaps paying a car payment!!! lol EMG's aren't Cheap.You are fine hon. I think you need to look into a psychiatrist and anti anxiety meds. Its been working for me. I hope you can find peace ..this is totally disabling you from a mental perspective. *** does not involve pain til latter stages. STAY OFF THOSE FORUMS..DONT EVER GO BACK! It was said to me that "people describe things differently than others"..Say I have a headache in the back of my head...and you have a sinus headache..I could say "man my head hurts and is throbbing"..you may say "yeah mine too"..we go to the doctor..what I didnt tell you is "my head ache is at the base of my head..and shooting pains is actually occuring..."what you have is achiness and discomfort around your frontal lobe and are stuffy."..See the difference...Say were both thinking "OMG we have brain tumors"..Words get lost in translation.I think that happens a lot on the *** forum w/ us BFS'ers.Please get a hold of yourself now...before you cant ever let this go. You've been to 2 to many docs as it is. Your fine hun!Take Care. Lovely
Wow Bart....poor thing. You are 1110% ok. Its mental right now. You've had MORE than enough test, I first started twitching around Oct 06. It stopped I think in Feb07. Went away alllll spring and summer and hit me again three and a half months ago. From Docs upon Docs and what I've been told...You know pretty quickly w/ this disease if its ***. You would be the FIRST PERSON IN THE WORLD to have a CLEAN EMG, how about 4 CLEAN EMG's and who know's HOW MANY clinical exams to actually have had *** and not BFS or something other benign. You are dwelling on the impossible. What people dont understand is the "clinical" test is all you need to rule OUT ALS...EMG's are used to RULE in ALS or "other" conditions when its expected . THAT BEING SAID THO...if a doc offers a EMG that is not b/c you HAVE ALS...he may be simply "easing your mind", "looking for other non sinister things) Or perhaps paying a car payment!!! lol EMG's aren't Cheap.You are fine hon. I think you need to look into a psychiatrist and anti anxiety meds. Its been working for me. I hope you can find peace ..this is totally disabling you from a mental perspective. *** does not involve pain til latter stages. STAY OFF THOSE FORUMS..DONT EVER GO BACK! It was said to me that "people describe things differently than others"..Say I have a headache in the back of my head...and you have a sinus headache..I could say "man my head hurts and is throbbing"..you may say "yeah mine too"..we go to the doctor..what I didnt tell you is "my head ache is at the base of my head..and shooting pains is actually occuring..."what you have is achiness and discomfort around your frontal lobe and are stuffy."..See the difference...Say were both thinking "OMG we have brain tumors"..Words get lost in translation.I think that happens a lot on the *** forum w/ us BFS'ers.Please get a hold of yourself now...before you cant ever let this go. You've been to 2 to many docs as it is. Your fine hun!Take Care. Lovely
Hi Deedee,Thank you for your reaction and your sweet words. It gives courage to know that there are other people out there that our going through the same. But it's hard convincing myself, very hard...(and if I got your profilename right , pregnant&..? congratulations !!! Wish you all the best !Bart
Yep 5 months is clear babes. Look at some of the return neuro posts. Some people you might want to search w/ good neuro return posts would be "sparkrlock", "stevenpaulo" (for sure), Sir_Trouserz, and JoAnnela, PaulReason...they all have great helpful info. Along w all of Aarons post.Your good to go. Remember pain is not a prob with *** til latter stages hon! At that point you'd have "issues" badly.
Yep 5 months is clear babes. Look at some of the return neuro posts. Some people you might want to search w/ good neuro return posts would be "sparkrlock", "stevenpaulo" (for sure), Sir_Trouserz, and JoAnnela, PaulReason...they all have great helpful info. Along w all of Aarons post.Your good to go. Remember pain is not a prob with *** til latter stages hon! At that point you'd have "issues" badly.
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