Unexpected Twitching and Weakness

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K

KarinJoy420

Active member
Hey everyone!I know I posted a week ago about how I was working out and everything was going great. Well, for three weeks now, I have had horrible twitching in the left leg and am very weak in both the left arm and leg. It is so hard to carry my daughter, that I have to put her down. I thought maybe my thyroid was out of whack again, so I went for bloodwork on Monday, got the results yesterday - all in check. My Endo says there is really no relation between the twitching and the thyroid - so who knows! I have also for awhile now had the thick phlem in the throat - that does not seem to want to go away (and of course I read that is a symptom of ***)! Is it true that the twitching comes on strong when the muscle is about to die? Is that why I am so weak on one side? I am trying to stay positive - I called the Neurologist at the *** clinic - and they told me to come in. My Endo told me yesterday, that sometimes *** dosen't always show up right away on the EMG (not what I wanted to hear) What does he know - he is not a neurologist! I just do not have a good feeling about this. Please say some prayers - I just couldn't stand to hear anything bad!Karin
 
Oh and I forgot to add that I have had terrible cramps in my hands, the thenar muscles - it is so hard to even type right now. I actually feel a little paralyzed on my left side.
 
I would believe the neurologist.Your Endo made a statement that has to be taken into context. First of all, ALS is detectable by EMG weeks to months before the onset of twitching. So the fact that you are ALREADY twitching means that if it were ALS it would be in a late stage and easily detectable by EMG and physical exam. Your neurologist would not have given you a clean bill of health. But it looks like he said everything is okay.Muscle twitching comes late in the game for ALS patients and they fail the physical exam as well as the EMG test, they have "debilitating clinical weakness" as well as "sharp waves and fabrillations" on their EMG report. Their muscles are wasting and atrophied, etc. etc. So if you've been twitching for a while and your EMG was clean, I would not give ALS a second thought.Just my humble opinion
 
Hi Karen-I actually went to the neuro again because of my thumb and hand cramps because last time I had a lot of nerve block and possible carpal tunnel. During this visit I told him about how it feels like my arm is weak and I have to switch arms because it wont hold weight anymore. Also told him if I use my hands with a screwdriver or to text how they burn and I cant use them anymore. Let me tell you about my Endo issue. My endo told me I had a "pheochromocytoma" which is a cancerous form of a tumor that has not treatment. HA HA! So for 6 months or so I was 17 thinking I would be dead in a year and I should have sued her. She didnt take into account my BP meds were raising the chemical that points to a Pheo. Here is what I want everyone to think about. Dee and I talked almost daily about "slow onset ALS". Please understand that there is no such thing as "slow onset". There are many factors that confuse people into thinking that the disease took all this time to show up after symptoms. If you go to the Neuro with twitching and other symptoms (cramping, perceived weakness ect...) and an EMG is done and a clincial exam is done they can tell RIGHT THEN if any NMD is suspected. From all the sources and from both of my Neuros (one is the head of all the neuros doing EMG's in Ohio). ALS will show clinical and EMG symptoms even before YOU experience symptoms. So by the time you are twitching the process has started and there is NO WAY for the muscle to test NEGATIVE when ALS is impacting the nerve conduction. Here is what I have found people miss. ALS is a diagnosis of exclusion. It takes 3 limbs that have EMG and CLINICAL signs to dianose ALS. The criteria are more specific but thats the basis of the DX. It can take a year or LONGER for all three limbs to show involvement BUT the Neuro knows that seeing Fibs and PSW's and fascics can be ALS. (fascics are common in EMG but not with the other two) At this point you would be scheduled for follow up exams to check the progression with NO DX made until all the criteria are met. So its not SLOW ONSET but SLOW DIAGNOSIS if you will, because they want to rule everything else out. This is not ment for you Karin but for everyone thinking that they have had an EMG and have symptoms and ALS will "pop up" in the future. I also have neuro notes that say that "sean knows and we discussed that with a clean EMG and clinical exams there will be no progression into a NMD because he has BFS/BCFS syndrome". I have an audio recording of me telling my neuro the EXACT things you are talking about and he was not even concerned. I told him about the thousands of twitches in my thumb muscles and how they cramp and go into my palms and it feels like I cant use them. Its fine! I know you are nervous and if someone can tell me how to post that audio file I will do it for the entire board to hear :D) So there you go! I have the same sypmtoms and he was more concerned about carpal tunnel! Hang in there Karin, its going to be just fine!Sean B.
 
I just first want to say - I don't know what I would do without all of you - I thank you from the bottom of my heart - really! I just love you guys for putting up with me, and I truly was doing well - and then this horrible twitching started up and then the weakness - I guess if I had it all over it wouldn't freak me out so much. Sean - have you had these symptoms - I swear to you it looks like my left hand has a big dent in the thenar muscle, whereas the other one looks normal - the normal one is my right hand - in which I am right handed! I was supposed to see the neurologist today at 11:00 - but she was so backed up - I had to leave to pick up my youngest. So, I am not seeing her until Monday - uggggg a whole weekend of waiting! I have been getting some real big ones (tiwtches) this is scaring the crap out of me! Why do Endo's try and scare me too? I could only imagine what you wwnt through when they told you - you had cancer. Well, I sorta can realte due to the fact that my Endo told me I had ALS. So you promise all of these crazy symptoms are BFS????? And your saying that with the two EMG's under my belt - I am pretty safe? I will take a picture of my hand and post it - if I can. I was so freaked out today that I called the Neuro's office and scheduled another EMG - I guess I like the pain!Thank you again - I am going to try and calm myself down - but when I relax those twitches come on with a force!Love you guys!Karin
 
Hey Karin, I sent you an e-mail about EMG's and how definitive they are. Hope you got it. With 2 clean ones, it seems to me you have to be in the clear. I still think this is thyroid related and your endo is an alarmist.Linda
 
Karin-YES! I have one of my muscles in my thumb that look smaller than the other. If you remember a guy named "andytwitchalot" he posted pictures of his thenar muscle. I mean there was a HUGE difference and they said it was ok. Also I cant remember if its the median or the ulnar nerve that causes carpal tunnel and when they see thinning of that muscle carpal tunnel is HIGHLY suspected. Also you have to take into account dominate/non dominate hand and usage patterns. For example I am right handed BUT I am MUCH stronger with my left arm/hand. My right forearm has a HUGE dent (you can read about it in my posts at the end of last year) but these variances are NORMAL. According to my docs by the time you have atrophy you will have a GREATER amount of weakness (in a way of thinking). I promise you I have no concern as I have went down the same path and asked all the questions MANY times. All of these symptoms led Dr Mayr (the big wig neuro) to say that I have BCFS (BFS with Cramps) because I have worse symptoms than most with BFS. I can flex muscles and get them to cramp and if I flex some muscles I can cause twitching right there. I have days where it feels like one side of my body will give out and it STINKS! But its all BFS/BCFS. Nothing more and nothing less. If I felt in any way you were misinformed I would suggest you go see a different neuro. But all the testing has been done, and all the results were NEGATIVE! So if you keep telling yourself this and keep thinking positive the symptoms will be there, but the constant worry will slowly fade to the background. You eventually say "Hey I had multiple tests by doctors that DX ALS, if they saw ANY sign they would tell me and I would know by now". It takes us largly varying time span for these thoughts to subside and the good ones to take over. I still have days that I catch myself worrying but then its how quickly I recover from those thoughts is how I determine my progress at beating my anxiety. It really took about a year and a half to function again. I almost lost my job and all. So hang in there, but I promise you that everything you are going through 100% fits BFS and its going to be ok. Its not going to be FUN but in time you will learn to be thankful that you are on this site and not others. Sean B.
 
okay - so over the weekend when I start to freak out again - and while I am at Disneyland tommorrow - I will keep telling myself that I have had several physical exams, 2 clean EMG's and NCV - that I am good. It is the mind part that is hard - believe it or not the twitching has calmed down a little bit, from talking with all of you. Thank you for helping - I will post after my Neuro visit on Monday - but I am sure you will hear from me over the weekend.
 
Hi Karin! Sorry to hear this has you down, but I completely understand--been there and got the t-shirt.I see this endo is the same quack that told you that you had ALS based on a blood test. If human decency was gunpowder, this twit wouldn't be able to blow his nose. My neuro told me that an EMG will detect changes in asymptomatic limbs. If ALS is present, the EMG results would show that. You've had 2--both clean. Also, you have been doing well until recently. Again, my neuro said twitches from ALS "don't act that way"--coming and going, waxing and waning. If your blood tests were also "in check" as you say--even if elevated CK, but not more so than in the past--what could this mail-order degree endo be basing his "diagnosis" on? He didn't sprinkle you with chicken blood and dance around the room, did he?I don't mean to be flippant, but I'd listen to your neuro. You've been twitching a while; if an EMG couldn't pick something up in you, it wouldn't pick it up in anyone--twitching in ALS means the disease is well under way. I know you're concerned about weakness, but could the extreme anxiety you're experiencing lead at least in part to that feeling of weakness? When I was really hyper about my health, I felt physically drained--wanted to do nothing but sleep, had to stop using gardening tools after a few minutes to rest, etc. You know you have a thyroid condition and have been CLEARED of having NMD. Those are facts. I think when you see the neuro on Monday you'll get the same outcome.My two cents would be to find another endo--someone who didn't attend the Marquis de Sade School of Bedside Manner. Try to enjoy your weekend and when your neuro exam goes well on Monday, please let us know--and then push past this.With warm regards,Mark
 
Hey Mark and Karin, that was a great post and I agree with all you said. As I told karin, Hashi's can play all kinds of tricks with our muscles...including elevated CK levels. I also think it's time for a new endo. They are a dime a dozen Karin. You don't need this one!Have a great stress free day at Disney.Linda
 
Hi Sorry to hear this thing is still getting to you. I know what it is like as I have been there.You must fight the negative thoughts, as this is the road to recovery, honest. (not easy I know)As you know I have read you past posts and you symptoms and what you have is BFS.Fatigue, twitching, pain, feeling weak, lethargic, mentally exhausted and much, much more are the symptoms I had during my dark days. Unable to face people, I was so down and depressed over this condition. Yet today I smashed up concrete, laid a new foundation and built a garden shed. Then, Yes!! I went out on the drink with my mates from work. Although I had a throbbing head the next day I didn’t put this down to BFS, can’t think what caused that!!!It is a proven fact that positive thoughts, laughter and being happy, create a hormone release that helps the brain/body repair and cope with stress. Laughter and being happy with this condition is not easy, especially at the first stages of the condition. So take it a step at a time. Disney is a great idea. You will have up’s and downs with this condition, but remember with the nasty stuff there is only downs. I know you will beat this thing, and yes, it may take time, but time is what you have, lots of it too!!Be strong and fight this thing. Spit in it’s face. Keep occupied and keep telling yourself over and over that you are getting better. Trick the brain, that’s the secrete. If you have bad days, just chill and take it easy. When you have good days, go for it and enjoy all life has to offer.You will win I promise.Take care Chris
 

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