New to Twitches and Pain

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snowfl4k3s

New member
Hello everyone,I am a new comer, and I too experiencing twitches and pain as well. I am so relieved to read some of your postings specially Sean block's posting in response to the Please Help forum last March. What Sean wrote helped lowered my anxiety a great deal and what you all said gave me a lot of comfort. Now I know I am not alone in this. My wife thinks that it was all my imaginary, and at times I thought I was going nuts with this. I started to sense my twitching late October 2007. This was while I was taking Crestor to lower my cholesterol. The twitching got worst until I stopped the Crestor in early January but never went away. I was really scared since I had an uncle who was diagnosed with ALS while taking Lipitor (the neurologist told me that this was a coincident since statin drugs do not cause ALS). I went to my primary doctor and then to a neurologist, and rheumatologist. I had a NCV and EMG in March, and all came out normal, or at least not ALS or anything else. He did detect a mile case of carpel tunnel. I am experiencing a fair amount of paint in the muscle back of my knees. Twitching all over the place but mostly very soft. I did feel like some ants were crawling on my skin in the lower legs/ankles. I get tired easily, and unable to sleep (guess you all been through this before). I am on Ambient now to help me sleep, and I am wondering what you did to be able to sleep without Mds? I have a lot of discomfort when I sit for more than 30 min. for I sensed a burning sensation in my bottom and back of my legs. I would also like to ask that while referring to muscle weakness, can anyone define what it mean? and at what stage of ALS you are to experience this weakness? I can use all the support I get because there are days that I was so scared that I did not think I can make it through a work day. I think of this disease 24/7, and wanting to go to sleep all the time so I don't have to think about it. Thank you for your support.Daniel
 
Rocketman,Welcome. I can relate to you in so many ways. Your symptoms,tests, timeline and anxiety. I am a relatively new member here but I'll share with you what I've learned thus far. From what I understand weakness is usually the first symptom of als. Twitching w/o weakness is benign. You've found a wonderful resource in this site. Their are a lot of members here with a trememdous amount of board cred. They can offer you great reassurance and insight.As for sleeping at night..........stay off the computer prior to going to bed. That's what helps me.CDC
 
Hey Daniel-First off I am more than happy that I could bring you some comfort while you are going through all of this. Words alone can't thank those that helped me when I first experienced symptoms and was overcome with anxiety. I appreciate very much the kind words. Ok down to business!The information I provide is first hand from 2 neurologists that are the best in my area and I took notepads to my appointments to ensure I wrote down everything they were telling me so I would not forget. These are the credentials of the doctor that performed 3 of my emg's and I specifically asked about weakness on several occasions his name is Dr. Mayr:The Mid Ohio EMG Center at Neurological Associates signifies our commitment to excellence in electromyography (EMG) - an important neurological test that has been performed at Neurological Associates since 1974. Our medical director, Dr. William Mayr, completed his medical internship, neurology residency and clinical neurophysiology (EMG) fellowship at the Mayo Clinic in Rochester, Minnesota. Board certified by the American Board of Psychiatry and Neurology (ABPN) as both a neurologist and clinical neurophysiologist (EMG specialist), Dr. Mayr leads the EMG efforts of our team of eight neurologists. So with that kind of experience I was happy to have him do my EMG. I was worried about constant twitching in my foot (that he could see in the office). I was also worried about weakness and atrophy. Dr. Mayr said he has diagnosed "more cases of ALS than he would like". He told me that typically when a person came in the door that was a new patient that had symptoms, right away he knew what he was dealing with. The reason for this is that ALS presents in one limb (typically). Out of all his diagnosed patients NONE of them presented with twitches. He even has a patient that his father, brother and uncle died of ALS and has CONSTANT muscle twitching. But he did the clinical exam and there was no weakness after a few months of twitching and he is not worried about him. Weakness is 99% of the time the PRESENTING symptom. What both my neurologists told me was that the patients that notice the twitches first are typically older and dont report the weakness or sometimes just notice the twitches. But the key here is that WEAKNESS is the beginning symptom of ALS. You sound similar to me in that you have other symptoms. I have stiffness and pain in my legs and foot. Pain is not related to ALS in any way unless at the end stages of the disease. Dr Mayr told me this he said "Sean we have done the tests and there are no issues that I see". But I could not beleive him. I didnt think this could go on, I could feel tired EVERY day (and as you say...I can literally fall asleep sitting up with no warning) and it be a "benign" condtion. What finally broke my anxiety was Effexor. I got to the point where I was calling off work because I could not sit still, and I didnt want to be there. The anxiety you have is very common among us and is the HARDEST thing to get past. In time you just say "ok well I twitch...gosh this is annoying..and I dont feel like "ME" anymore....but I know its not a life threating problem". Effexor helped me get out of the COMPLETE dread every minute of every day. It just made me numb. This was only about a 2 month period and then I came to my senses and decided to stop taking it. It really increased my twitches, however I didnt worry about them hardly at all.Lastly what really helped me was my last neuro. I went to her really just for a 2nd oppinion and then I would get over this. She saw my twitches, saw my cramps and tremors. She answered all of the questions I had before I could ask them and repeated what the last neuro said just in a different way. She said "Sean I see this all the time. It does not matter how you twitch or where you twitch..or cramp". She basically looked at all these symptoms and said "this is normal"! I was shocked! She re-assured me that this typically is a long term thing and nothing will slow or stop the twitches. Its all about getting your anxiety under control and getting rid of as much stress as possible. I also have problems sleeping at night (its 1:20 and I have to be at work at 6:30) ha ha. She mentioned ambien but I am going to wait a while for that. If your twitches and symptoms started in October of 2007 and you had an EMG just a month or so ago and it was clear, I am VERY happy for you. Both of them reassured me that within a month of twitches or other symptoms the EMG would show definate abnormalities and indicate something was wrong and further testing was needed. So my last neuro didnt want to do any followup, anything! She told me to work out, spend time with my family and get out of the house more and learn how to deal with my stress better. So the hardest part of your journey with BFS will be to overcome the "Could this be" and get to the "there is NO WAY this could be". For some of us it takes months, some years and I would be dishonest if I said I dont worry from time to time. So if you have any other concerns fire away! I am always available on PM and more than happy to answer a question you have since I think I have asked neuro's everything that can be asked. Its better to ask than to worry, so hang in there!Sean B.
 
Thank you CDC and Sean for your great words of support. I just want to share with all of you a personal story I called " thank GOD for a warm day", and I meant every word of it. Yesterday when I came home from work, it was a really nice day in the Maryland area (75F and sunny). I saw that my grass was pretty high after all the rain we had recently. As usual, with all the feelings I had with the twitching and depression, I did not feel like doing anything. I could always get some kids to cut the yard for me. I thought, you know what, I will TRY to cut the grass today. Not really sure with my energy level and the muscle pain that I could actually do it. But I was determined to give it a try. I was tired of being tired all the time. So I pulled my lawnmower out of the garage. Saw my neighbor and said hi to him. He is an older man than I am. He is retired but still in very good shape and good spirit. He wrote his motorcycle around all the time. I gassed up the lawnmower and tried to get it started. As most of you know, it was not easy to get the mower to start for the first time in the season. After more than 10 pulls, the thing did not do anything! I was tired, and actually thought to myself to ask my neighbor to help me pull the lawnmower to get it started. Then I thought how 'wimpee' I would be to asked an older man to pull the lawnmower for me! So I kept trying. Thank goodness the thing started. I proceed to cut the entire yard. It took me about an hour to do it, but I DID IT! You don't know how proud I was just being able to accomplish this task that I simply took for granted just a year ago. While pushing the mower around the yard, I did not notice any pain in the back of my knees nor did I give it too much thought about the twitching and *** topic. This action alone inspired me a lot. It reminded me that there is still a beautiful world out there, and it will continue to go on. I spent the last feel months of my life surrounding myself with looking for disease symptoms, finding the next doctor to go to, what vitamins to take, feeling sorry for myself, and pretty much preparing for my demise. Today is a good day for me, knowing that I can still do the REGULAR things I do, and life is still good. I do not give the *** much thought now and hope that I won't be too often. I hope that some of you can relate to my story and it may lighten your day.Have a good one,Daniel
 
Hey Sean B, Daniel, can I just say that those 2 posts have been an amazing help to me.For the last few weeks, it has been getting harder and harder to find the energy to keep going but today, I thought bugger, I am gonna go get some of the weed off the top of my pond. So, I pulled back the net and got the weed off. I also sorted out my waterfall and cleaned out the filters. When I had finished, the backs of my legs were aching and I was very tired, but this disease has had enough of my worry so boy, was I glad and happy once it was done.I have worried, panicked, worried some more about this. I think my missus thinks I am imagining it, either that or she just doesn't care :( . I work away all week and travel home (about 4 hours drive) on a Thursday night so I get very little excercise but next week, I will be taking my mountain bike and doing some cycling after work.Both of the posts mentioned above have been a great help and more people should take note of what has been said because getting out of the "is this ***" mentality is the key to not allowing BFS or PNH to take control of our lives...I commend you you guys Sean B & Daniel...thank you...
 
hey,thats good that you pushed yourself. i wrapped myself in cotton wool for far to long. i suffer leg pain issues so i understand, but if we don't push on we will become out of shape. and it sure does feel good if you've done something physical. :D) the next day can leave you feeling like ya 99 but at least you've done it.cheerssharon :D)
 
Hey rocketman, Sean said it so well, I would like to add. It truly does take time and you will have your up and down daysAls usually starts with weakness first, only rarely do twitches come first. I started twitching about 9 months ago somedays are better than others. Two days ago I was in a panic my calves and ankles just wouldn't stop. Today I played5 hours of tennis. I am still twitching today, but I feel better about them. So perhaps the trick is to go out there andkeep doing. Another thing it isn't all in your head and I don't think it is all anxiety related. Be good to yourself do things yourealy enjoy ;) Cornelia
 
I wholeheartedly agree with all of these wonderful posts. I just wanted to chime in on the statin drug part of your fears. My bfs symptoms started decades before I started statin drugs, however, both times that I took these drugs (started them the last few years), I had severe muscle pain, (that's one of the side effects that are considered serious). Anyway, my cardiologist took me off of the statins both times, (I did have relapses of BFS during my time on statins or right around the times, but that could be just a coincidence since I've had relapses on and off for so many years.) Anyway, just this week my cardiologist gave me Lovaza, it's a new (at least I think it's new) prescription cholestral medication that is not a statin. It is made up of Omega 3 acids and is more natural. I haven't had time to research it too much, so will do a little more reading before I start it. I'll also let you guys know if it lowers my cholestral significantly. Could be a good thing for those who have adverse reactions to statins. Best Wishes, Denise p.s. I've heard of the possible statin and ALS connection as well, but millions of people are on cholestral lowering medications, they're one of the biggest sellers for the pharamectical companies, so it makes me wonder if it's just not some sort of coincidence since millions of people in that age bracket are taking statins; probably more unbiased studies need to be done. I do feel that statins are probably lifesavers for some people, but they definitely present a danger to people like me. Regards, Denise
 

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