Questions About Fasciculations and Swallowing

[jonny1johnny2]

Hi all, Ive posted many times in January. My fasciculations in my legs are constant and I feel my total body muscle bulk is much less. Now my swallowing is difficult and feel subtle changes in my speech. I saw the neurologist again. He last saw me Jan 30 (and 2 other ones saw me early DEC). In january he did a 3 limb EMG and clinical exam which he said was normal. I went to see him again. He is a peripheral nerve specialist. I just feel at age 31 I have bulbar onset MND. Im afraid to eat and when i speak it feels like its getting difficult. Here is a copy of his letter to my GPDr T***********Neurologist and Clinical Neurophysiologist25 March 2008Dear***********Jonathan came to see me today, still concerned about fasciculations and a sense of weakness/easy fatigue in his right leg and left hand (whilst writing). There have not been any new symptoms and he has had some weight loss although his appetite remains stable. He reports difficulty with swallowing but no frank obstruction or aspiration. He has been seeing a psychiatrist but is still very anxious and expressed ongoing concern about the possibility of underlying motor neurone disease.On repeat examination, I could not find any signs of neuromuscular or neurological disease. He had normal muscle tone, muscle bulk and very normal power despite vigorous attempts to test strength. Tendon reflexes were normal, plantar responses flexor and there were no cranial nerve abnormalities, in particular no dysarthria and no tongue wasting. I could not see any fasciculation despite prolonged observation and repositioning of the limbs. Jonathan's clinical examination is again normal and I reassured him that there are no features to make me suspicious of motor neurone disease or any other neuromuscular complaint. If the dysphagia persists as an isolated symptom, it may be reasonable to consider a video fluoroscopy but he is happy with todays reassessment and re-evaluation and doesnt wish to proceed with this at present. I would be happy to review him if and when this is necessary but have not made any formal appointment at this stageYours sincerelyIm very worried.....

 

[cindyandco]

jonj: I am so sorry to see you worry yourself like this. It is so miserable to be this afraid. If your doctor said he sees no sign of neuromuscular or neurological problems, believe him. The swallowing problem is classic anxiety. The weight loss is classic anxiety. Last fall I was in such a state of anxiety that I could not get up in the morning without vomiting. I lost 20 pounds in 3 weeks --yes some muscle mass went with it. It was like my body had to convulse like that to alleviate the tension. I won't EVEN tell you what played in my mind. But, I got past that and haven't done it since. (I've also gained 10 of the 20 I lost back )At 31, you are a VERY unlikely candidate for the things you are fearing. Please be reassured, you sound like a case of nervous speculation. Stay totally away from websites that will produce more fear and you know which ones I am referring to. Try to reign in your mind and direct it to something that brings pleasure. We could all use a boost of endorphins when we're like this. Find something to laugh at and let yourself believe that you are okay and your whole life is ahead of you----because it is!!!!!BlessingsCindy

 

[sparkrlock]

Hey Jon-As bad as you feel you MUST take comfort in all that he said. There were NO signs of anything wrong and it will stay that way. Be happy with your report. My last one included the statements " high definition of foot muscles (which is where I am MOST concerned about) but at this time does not seem to be abnormal" and "fascuilations seen during exam in each extremity and some were noted that patients was unaware of". So thank goodness yours came back that you are having minmal symptoms and even if they found a few things, that still gives no call for MND. I had ALL the swallowing problems and issues with my tongue, but now they have went away and I know how scary it can be. Just give it a few months, I have the same issues with my arms and hands getting tired and feeling like they dont want to work. Both neuros said that has nothing to do with ALS...its BFS related. In something bad you would not "feel" like it was weak...you would not be able to write or your handwriting would be completely different. Hang in there....but soon you will find out that this thing SUCKS but thats it. After a point you will start to trust your doctors, but if this is the 1st you have seen...in a few months you can get a 2nd oppinion but you must tell yourself that at that point you will be COMPLETELY done with worrying about this. Otherwise a 2nd neuro visit will not help. Best of luck!Sean B.

 

[jonny1johnny2]

thanks for your posts. just out of interest, what were your swallowing issues precicely, sparkrlock and onescaredlady? that is what do you mean when you say swallowing issues. and are your fascics constant. mine dont stop in my calves. thanks again

 

[cindyandco]

Swallowing issues: well at one point last October, I couldn't swallow without wanting to gag and sometimes I would throw my food back up (UGH). There are times, occassionally, when I take a drink and either get too much too soon that I cough and choke. Or if I take in a big breath of air, I will get a choking spell. Jonj, everyone does that from time to time. EVERYONE!! Unless you're doing it every third time you swallow or something, don't get panicky. That will most certainly make it ALL worse.Well, I've relaxed a whole lot since October, (thank you God for good meds) and that rarely happens and I don't vomit anymore. But, no one could have told me that then. Fascis? I have them--don't pay as much attention to them, but they are still there. I nearly flipped the other day when my right arm developed one that stayed all day long. There was a period of about three weeks, when my right butt cheek felt like it would come off the bone. It just happens sometimes. It happens sometimes with EVERYONE. Most are too busy living life to give them any thought. Allow yourself to believe that you are okay----you may always twitch, etc., but when you take the worry and the fear out of the equation, its really no big deal .You're going to be okay---you're going to make it----life is good!Cindy

 

[ZekesTraveller]

An excerpt from one of my recent posts:Well after a year and a half of seeing my current neurologist he did tell me the EMG (I have had 4) would have picked out ALS immediately. But it is not necessary since the clinical exam is the real meat of the diagnosis part. EMG just confirms the diagnosis. So for all of you who are out there afraid please take comfort that after one EMG it is even rarer to go on to develop ALS. Not impossible but many times more rare that just getting ALS since we have gone through an extra filter that most do not. Twitching is not even a concern. It’s the muscle strength that matters! I also asked about with contrast and without contrast MRIs he said the contrast would just show the new lesions vs. the old lesions. Hugh...I always wondered about that!BCFS is sometimes auto-immune related but most of the time it is not so says the doctor until research makes some connection. For now it is the exception not the rule. Moreover if you do have the autoimmune version it appears it is not like the other autoimmune illnesses. Yeah, I can read all the studies but the neurologist knows how to cut right to the chase. Our interpretations of studies are so not accurate I will no longer try. I am leaving that up to the pros forever! You resent members should go back a read my initial posts when I first got on here. I was a train wreck. Yeah, I have the twitchy index fingers, tongue, pins and needles every now and then. I tend to have my problems on my right side but I am still here. I even have atrophy due to injury though and I am still here.

 

[sparkrlock]

Hey!Well my twitches are NON stop in my left foot. Pretty much I get random ones ALL over my body 24/7. I have not had a break from these since they started...not one hour...not one minute. I was feeling like my tongue was heavy, I could not swallow my food OR medication. I noted that I was drooling at night while sleeping and overall my tongue I felt like was completely quitting on me. My jaw was getting tired when I chewed to the point of I would STOP eathing because it would hurt so bad. Today I have NONE of those symptoms (except the twitches of course!). So yeah I have all over twitches but focalized in my left foot (I get them in my calves very frequently). And I had the tongue stuff (which is what led to me going on effexor because I was looking at my tongue like every 15 minutes at work). It really killed my anxiety and then I stopped it and I am MUCH better now. Sean B.

 

[paulrational]

Why worry when you have an unbelievably satisfying medical report we would all like to own,Frame it ,hang it up and look at it everyday and say "thats me ALS free".Ignore the fascics mine are constant also, have been for many years.

 

[ChrisSwiftly]

HiThis is a very good, very good!! reprot. what you have are the classic signs of BFS.once you accept this you will see an improvment, take it from me,as i have been in the place you are in now, three years on i am still hear and doing well. OH! and Johnreason, can liverpool FC please sell some players to Newcastle united, we need them.take carechris

 

[paulrational]

Hey! Newcastle have got one of our best ex players shame he now ye manager,ye aint getting any more or maybe some will retire to Newcastle one day.You all should stick by Keegan he do the job eventually as long as he dosent go off sulking and twitching somewhere.Oh by the way Newcastle should get rid of some of ye old gits in the team.

 

[AnnieBazemore]

Gosh me too...Why can't this stuff go away just as quickly as it came is my question? Spasms in my hands, fingers, and the tongue. Could just be a cranial nerve condition. I prayed for a tumor they could remove, but nothing there...I know it's BFS, but I still get scared too. I have gone to GNC and purchased a womens mega multiple plus ALA and Choline $$$. They say that people with Neuro disorders lack these supplements. I also know that Gabapentin can help with blocking glutimate that can damage nerve cells. So I eat less gluten, season everything myself, rarely eat out now, and still I have this stuff. I know in reality that if I had *** that there isn't anything that can be done for me anyway. I actually had a doctor say that to me. It was not what I needed to hear. I think that I speak for many on this site when I say that we don't go to a doctor looking to hear we have *** we are looking for reassurance that we don't. They think that we are all a bunch of hypos and that's not it at all, we are just scared, stressed, and misunderstood. I have four words, "Good Bed-side Manner" I am still looking for it.God bless,Anne B.

 

[BandersnatchF]

It sounds like you might have . It's incredibly common (WebMD says 5-7% of the population), and can cause difficulty swallowing and hoarseness. While heartburn is a common symptom, it's not uncommon to have GERD without heartburn. GERD is, of course, treatable by medication.