Laurie's Story: Twitches and Cramping

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savedbygrace

New member
:eek: So I have found a place for us twitchers, good! Okay here goes my story. By the way my name is Laurie and I am 52 years old.
About 2 1/2 years ago I started to notice the twitches. I felt them in my leg and decided to sit and watch. I thought it was funny, I mean we all get an occasional muscle twitch don't we? Well it continued, soles of my feet, legs, arms, hands, tongue. The cramping was severe, hands and feet. My doc sent me to a nice female neuro. She and her associate did all the tests to rule out MS and whatever else, and did the painful needles in the muscles test. I went back for my follow up, my best friend just happened to be with me. The doctor came in and said she was so glad I was not alone, she had the worse news for me. ALS was her dx, I asked if there was any chance it could be anything else, she said absolutely not. She cried, I cried, it was like everyones worse fear coming to life, I was just given a death sentence. I called my doc and he already knew and he cried over the phone with me. I then went to an ALS specialist in Winston/Salem, NC and he was undecided. I was supposed to be rechecked in three months but I never went back. The cramping and fasciculations never went away although the cramping was not as severe. I have been living with the belief in my own head that I have BFS and I usually don't give it a second thought. Now the fascics are worse then ever and of course the cramping. I have trouble swallowing food it has been going on awhile but I wasn't connecting it to anything serious. Lately I run into things more often and when I walk I never feel stable, like I would like something to hold on to. I am not terribly afraid of ALS, I suppose it's because I already dealt with the horrible shock a few years ago. I would suppose that even slow progressing ALS would have progressed much faster then this. A few months back I mentioned to my new GP(my sweet one moved away) that I feel like a pinchcy nerve type sensation here and there in different parts of my body. It's like a quick sort of pinch, first in my arm, then a while later in my side, and so on. It comes and goes. He just shrugged his shoulders. I told him once of my ALS dx and he asked me what I thought I had and I told him BFS, he just said okay. So thats my story, believe me I was not brave. I was in a fog for months so much so that my best friend of 35 years, the one who held me up when I got the bad news, was having an affair with my husband and I never even noticed. That's a whole different story for a different forum LOL. Reply to me please. I have been scouring the internet for info on slow progressing ALS and I get little to no info. I also read all I can lately on BFS. I am not ignorant but I do not understand either of these conditions, when it comes to the brain I am lost. If you read this far you are a patient person for putting up with my rambling and I thank you.
Laurie
 
Second chance,

sorry to hear about your troubles. you've been through a lot.

What you've described doesn't sound like BFS to me... you may have something other than ALS, I'm not a doctor so I don't know, but a BFS dx requires a clean EMG and clinical exam, and it sounds like neither of those were normal for you.

You really ought to follow up with a neuromuscular specialist. If it turns out to be something like MG, there are treatments for it.

If, god forbid, it is ALS, it sounds like an unusual case. However the father of a friend of mine has had ALS for more than 20 years and last time I saw him only his hands were really affected. His is a rare case of course.

Do go see a neuromuscular specialist. I really think you need to find out for sure.
 
Dear Laurie,

Your story makes me feel like my own personal crisis was silly: you have indeed been through the wringer. Your initial symptoms of twitching and cramping are, as you know, typical of what most of us here feel. The trouble swallowing is also a common topic on this forum and is, again, typical of BFS with a dose of anxiety thrown in for good measure.

I have never been to a neuro and I doubt that I will go. However, from what I have read about others peoples experiences with Neuro's and EMG' is that nothing is conclusive about ALS. That is why so many people here post again and again about their fears, because they never receive absolute confirmation that what they have is benign. For this reason, it sounds like the neuro that you went to was trigger happy. She gave no room for doubt, even though, at that time, you were not experiencing clinical weakness or bumping into anything. Even the ALS specialist was undecided after seeing you. Just because the Dr.s cried with you doesn't mean that they are, necessarily, good physicians. That is why, although your present GP sounds a little cold, it was not disingenuous for him to ask you what you thought you had. Ultimately we know, and I mean really know, in that deep down place, that doesn't equivocate, if we are really sick or not.

Your husband was cheating on you with your best friend and you didn't notice. Considering what you've gone through and continue to suffer it is not surprising. Usually when a spouse cheats it because the marriage is suffering from severe communication breakdown. This lack of communication is very stressful on top of everything else that our modern society heaps upon us. My own life was terrorized by such stress,even though I have a wife who really loves me and two amazing, loving children.

Could this stress, known or unknown, have caused some of these symptoms to get worse? When I imagined that I was on my last days when I checked out my symptoms on the internet, I also felt that I was listing to the left. My left foot kept scuffing over the floor, pavement etc. I even tripped over a carpet at a convenience store, and I almost passed out from the adrenaline rush. Even though I could see that the carpet curled up and a disaster waiting to happen, the rational side could not disuade the fear.

You are a brave person Laurie. You have heard the words uttered, by a neuro, that we all dread. Your health has been compromised and someone whom you loved betrayed your trust. Yet you are still carrying on and taking responsibility for your own health, as is evidence by the fact that you are posting here. You may feel that you are not coping but your post displays a person with intestinal fortitude, which means your vital force is still burning bright.

We cannot know whether something is slow onset this or that. I am 45 years old and I probably don't remember as well as I used to. Does that mean that in 20-30 years I will have alzheimers? It would seem that I can't know the answer to that. Our concept of a timeline needs to be dispensed with if we are truly desirous about getting on with living. Waiting for the proverbial axe to fall is akin to killing time. The well known writer Kahlil Gibran says," we must not kill time, but rather live time."

The extent to which my own healing has taken place is evident by the fact that I can even read your post, and not cower in fear for the rest of the day. Your posting has helped me by re-enforcing the fact that I must embrace, love, laugh, care, and serve. I applaud your courage, your sensitivity and your love of life. If you believe you are well, then you are! If you are unsure, than I still think the jury is very much out on whether or not you have something nasty or benign. You have helped me and so I hope that, in some meagre way, I have helped you.

Cheers,
Basso
 
The thing I never understood was what she was basing her dx on? I asked and never got a straight answer. She said she picked up something in more then three areas and seemed to be basing it on that. I asked if it was just the fascics she picked up and she just said that yes she picked up fascics. I knew from all the reading I was doing at the time that fascics themselves are not enought for a dx. I also know it can be a hard disease to dx. Unfortunately it isn't like a blood test or xray can tell you. Although most neuros never see ALS cases in their years of practice or maybe only one or two I would hope she had at least at much knowledge as I had??

I read on this site last night that Thyroid Disease can cause these same symptoms! Well funny thing is I was found to have severe Graves Disease a few months prior to the twitching muscles. Maybe I need to see if my thyroid levels are good. It has been a while since I have been tested. I do take a thyroid pill daily.
I need to say here that anyone having any weird or scary symptoms should have their thyroid checked. It is a simple inexpensive test that is overlooked all too often. Thyroid disease can cause some horrible symptoms and it is so easy to correct. I had no idea what I had and was convinced that I was going to die at any moment, it was hell! I was afraid to see a doctor because I didn't want to hear bad news. I finally went when I didn't even have the strength to walk to the bathroom. So Please if you haven't done so all of you with these twitches and other bad feelings inside of you get this simple test done!
Laurie
 
How long after your twitching began did you get an EMG and were you twitching all over at that time ?

Did she do a physical exam. and find anything ? (A test cannot be a basis of diagnosis - there HAVE to be some physcial findings otherwise it does not meet the criteria).

If she was so sure then what made the second opinion undecided - did he find anything or do any test ?

There have been 5 cases just in SF Bay area alone where patients with definite EMG and clinical findings have spontaneously remitted. So did really have an MND or MND like syndrome... no one knows. In your case, you need to first find out what this is.

You definitely need to go to a Neuromuscular specialist (not just a Neurologist) and one at a university nearby. He'll pretty much let you know after the physcial exam. itself what the deal is.
 
I was afraid to post my story here, I didn't want to scare anyone. I know all too well about that thin line, first convincing ourselves we are fine and then all too quickly we can become paralyzed with fear. I came here because I felt lucky to find this site. Nobody knows what you are going through, they can't know without experiencing it first hand.
From my own experience I can say the fasciculations themselves do not bother me in any physical way, thay are painless and I have become used to them. It's the fear that is attached to them that is a problem. All of you who got a clean bill of health from an expert should rest easy. Twitching muscles is small potatoes compared to what some people have to live with. I am not trying trivialize your fears, what I am trying to say is don't allow yourselves to live with such a heightened sense of anxiety when you have been told you are fine. I know about anxiety and fear and would never put anyone down. Just try looking at the situation from outside yourself and realize that you are okay! We can believe a doctor when we leave the office but by the time we get home we have a million reasons why he could be wrong. I have done that over so many things in my life, second guessing everything.
Something good came out of this ordeal in my case. The MRI that was done to rule out MS showed a brain aneurism. Unfortunately it was in a spot that caused no symptoms. Of course all you worriers know why I am saying unfortunately. I had to get it fixed because of my high blood pressure and fear of a rupture. I was lucky, I had a time bomb in my head that would not have been found if not for the fasciculations.
I am going to get a thyroid test and have asked my GP to recommend a good neurologist for my peace of mind. After that I am going to accept what I am told and just go on with life, twitches and all
Laurie
 
I was examined by the first neurologist but I don't remember much about it. She then had me come back for the needle test. I cannot ever remember what it is called. She had stuck that needle in every part of my body.
The specialist I saw in Winston/Salem is an ALS specialist. He did so much physical testing, I was there all day. He stuck me with the needle too but only in a couple of spots, that part was quick. He said he wasn't sure and for me to return in three months. I didn't.
I saw these doctors a few weeks after the fascics started. I had mentioned it to my GP in conversation and he sent me to the first neurologist. At that time I did not know there was any danger attached to them. Funny thing is my GP at that time developed fascics, he told me about it and also admitted to me that he suffers from anxiety. He would not look at my twitching tongue, he was afraid his would start twiching too.
I would like to know the significance of walking heel to toe? Please someone let me know
Laurie
 
Heal-to-toe is balance and coordination (could be abnormal due to several things). You had Grave's disease - did you (or do you) get leg tremors ? (by the way, twitching and weakness can also come in due to Thyroid problems and if the goiter presses against foodpipe it can cause sallowing problems too).

You are not clear in your posts if your physicians ever found any abnormalities in their physical exam ? Also, did you see the EMG (the needle test) report yourself ? In other words, other than fascics, are you sure there was nothing else wrong (any kind of polyphasic waves or any kind of denervation).Why was the second physician still unsure ? Did he find anything or his physical exam or EMG test ?
 
No I don't know what was found. Believe me I am the type of person who asks many questions but in this case I never got answers. I don't know what they found. I do know that the ALS specialist said there were some findings in the physical testing that were questionable and he found the fasciculations right away when he put the needles in. He too was never specific. I did not see the results of the needle tests. When I went back to the original neuro shortly after I was told I had ALS I only got to see the assistant. He had a very heavy accent, I kept questioning him but he was vague. He only wanted to talk about the aneurism they found. I asked him what they found besides fascics and he just kept nodding his head yes. It was very frustrating. Then again I was not myself at this point either and I had very little understanding of ALS. I was in a state of shock and disbelief.
My Graves Disease was treated with radioactive iodine. I went into thyroid shock a couple of days afterwards. It took weeks for my thyroid to turn hypo instead of hyper.
I am reliving this as I write it all and I remember my friend was with me and she couldn't get an answer out of the assistant either. What we did get out of him was that he was once an assistant for an ALS specialist and he said he was sure I had ALS.
I never went back to the ALS specialist after three months like I was supposed to. I had not progressed at all and I had decided at that point that I only had BFS.
By the way I cannot walk heel to toe more then 1 complete step no matter how hard I try. I can walk on my toes and heels.
Laurie
 
Did the second Neuro. also find only fascics and was the test done on the same limbs as the first ?

You really did not give any specific info. about your symptoms or test from your previous visits or tests or it is hard for anyone on this forum to help. You should promptly go to a NM at a Univ. if you are worried.

If you didn't have any weakness (along with atrophy) then it would a good sign.

Inability to walk heal-to-toe could be either neurological or not. Are you thyroid levels in control and do you fall down due to balance problems ?

Can you stand with eyes closed for 15 secs. without moving ?

Again, do you have problems with tremors in the legs ?
 
Hi Second Chance,
I also had an abnormal EMG last August, My left eye had been twitching non-stop for 2 months I had every blood test known to man thyroid, lymes, b6, b12, sed rate.....so on!! My neurologist ordered EEG, MRI all normal. Then he ordered an EMG at the hospital. While he was doing the test I asked him if everything looked normal. He said "No, We need to get you to a muscle specialist" I was at the hospital by myself. I went to the parking garage where I cried for about 40 minutes. He never said ALS, but I knew thats what he was thinking. He made my appt with an ALS specialist in Nashville about 2 hours from my home. So, for about 10 days my husband & I were a wreck! I lost 15 lbs!! This sounds very dramatic and selfish, but I kept thinking someone else was going to marry my husband and raise my little boy! I went to see the neuro in Nashville who did a 90 minute EMG and said I absolutley did not have ALS! I went to Johnny Rockets and ate the biggest double cheesburger!! My diagnosis was BFS. All was well until February I started twitching all over and my hands were tingling (pins & needles) I freaked out lost the 15 lbs again went to see my doctor in Nashville who told me these were not signs of ALS, WEAKNESS is a sign of ALS! I started to look for weakness and paid attention to every little thing with my body. I started thinking what if the first doctor was right and the specialist was wrong. I drove my husband crazy. My wonderful internist put me on Lexapro and Ativan for sleep and said to ease your mind lets get an opinion from my friend (a Neurologist) I saw a great neurologist who did another EMG and said its BFS he seemed to know alot about it and said it could be from a virus that settled in my nerve endings and it could go away in a few months or linger on for longer. He eased my mind. Since then I am having severe headaches On the right side of my head the right top of my head and blurred vision on the right . So I am following up with him for this. I would find a good neurologist. I am not concerned with ALS so much anymore, I have had 2 EMG's that cancel out my bad one. But more than anything time is on our side ALS is a fast progressing disease, and I think you would have had more severe symptoms by now. This website has made me feel much better! I wish I would have found it way before I did!!
 

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