First Time Posting: Twitching and Cramps

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asyeasytobethereasy

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Hello. I have never written to a forum before but I am quite concerned about the symptoms/situation I have been experiencing for the last 2 and a half months. My name is Candi I am 43 years old. Well let me get to the point About 2 1/2 months ago It all started with the twitching! Also I have a vaugue crampy feeling sometimes in my hands/feet/and forearms. So I waited a few weeks, then went to the dr who did a exam (normal) and then sent me for asn EMG/NCS. When I had the EMG test the neuro said probably "BFS". But: Here are the results of the EMG test: Needle examination of legs to low lumbur paraspinal muscles are normal but mid lumbar paraspinal muscle did show occassional fibrillation potentials. IMPRESSION: 1. Mild right mid lumbar radiculapthy 2. No elecodiagnostic evidence of myopathy or motor neuron disorder or disease. Okay I am happy about the last part, but when I asked the dr (family) would this diagnosis (the radiculathy) cause the twitching he did not seem confident? So am I back to square one? I don't really have much back pain....I do have a little bit I suppose. Please I would love your opinions/thoughts on this report. Do you feel this report is conclusive that I do not have **S? No one else understands my concerns - in fact people who are very close to me are now angry at me for being so concerned about all of this. I wonder if any one else out there gets that kind of reaction to their symptoms? I am sorry to bother all of you but I am in tears over this whole thing. And I am still twitching....
 
Hey there. I'm not real sure about your question here. The EMG was negative for ALS/MND and the doc said likely BFS. You should be doing jumping jacks and dancing around the house with joy.You appear concerned because you asked your GP if the radiculopathy finding was causing the twitching and he doesn't know. There's absolutely no reason to be upset, worried or concerned by his answer. Nobody can really definitively say what causes BFS and the twitching. If neuros don't know, my guess is the average GP may have not even heard of BFS, let alone venture a guess on what causes it. So in short, you have an EMG that is clean for the bad stuff. It sounds like you had a finding on it concerning a lumbar problem but (I'm no expert) I'd doubt any back problem would be the cause of widespread twitching. Real quick, I found out I had a small aneurysm a month ago. I asked my doc, "do you think this could be causing the twitching?" His response was "I don't know...I don't think so." This is no way made me question my bfs diagnosis. Rather, I just took it as again the GP not knowing what has caused the twitching/BFS.So they can know what's not causing it in your case (ALS, MND) but that doesn't mean they know what IS causing it, other than its benign in origin.Relax and stop worrying.
 
TimThomas24; First thank you for your reply. I appreciate your time. I am sorry if I did clarify my question(s). I am getting myself sick over all of this. Yes I guess I was asking those of you with experience with these EMGs if the report sounded basically okay - no really bad stuff (the fibrillation part scared me). Can they be sure its a radiculathy from the type of findings? No one explained it to me. Also I am feeling very alone and wondering if any one else gets little sympathy for this issue from their family/friends? I feel so alone so then it only makes everything so much worse....Candi
 
Amy;Thanks so much. I really needed to hear that - you made me cry. I am very emotional right now and I don't have any outlet for it. As you said, friends and family cannot really have this "fun" experience with us, can they? Its a very frightening experience to go through - realizing you could have a possibl;e motor neuron disease - and even though it turns out we have been told we don't - no one else can understand that experience...... I do have to have an MRI done, but for some reason I do think I have a back problem and that will correlate the EMG findings. I was just so not sure what to think about what the report said. Maybe it is my darned back! I didn't think about what you said, if they knew what caused it then everyone here would know what caused their twitches, wouldn't they? My doctor keeps saying I need to calm down, as you said, but I really wasn't worked up about anything when this twitching started! Thank you to you both - I really appreciate your kind support. Candi
 
Candi,I am a 37 year old female and my twitching started a year ago and continues to this day. I do not get much sympathy from anyone in my family, especially my husband about the fear of ALS. He has been to all my neuro appointments and heard the neuros say they don't think I have ALS and one even yelled at me that I don't have it. So he doesn't see why I still worry. But the neuros also say they aren't sure exactly what is going on but think it is immune-related. The symptoms continue and are horrible. They never let you forget. I am VERY grateful that I have not lost any strength and do everything normally, including exercise, but this does make it hard for people to see that you are suffering. They just don't see it. I have done so much research about twitching and there are so many that have it that don't have a dx of ALS and the exact cause seems to be speculative at best in most cases. I guess we should just take comfort in the fact that twitching can and does exist outside of ALS even if the reasons are unclear.I hope this board helps you with your experiences.Krackersones
 
For sure it can be alienating at the start - it's like like having a flu for the rest of your life - you can only get sympathy the first few days and then you are on your own. :( Plus your family can't see or feel what your problem is - and you wouldn't wish it on them anyway. My family was a bit put off - and if you see it through their eyes it is hard to understand. They want you back the way you were, probably depend on you and now you've disrupted things with some vague symptoms they don't get and they don't want to adjust to a new you when they liked the old one.Your doctor telling you to calm down - well, I'd expect this from some but really! Wouldn't you just love to? I get spasms and hypertonus and had people tell me to 'relax' and at those times I'm glad I stopped doing martial arts because after a while I really started getting sick of it and could imagine myself breaking their arm. :eek: I'm not a physically violent person but it does get to you sometime and that was a phase (you will be relieved to hear that I have since learned to meditate more often). You will have to try another approach - write questions down to go through for the follow-up appt. - get him on the phone so you won't be plagued by these questions - or try another doc. Sometimes they get frustrated because pnhe is so ambiguous they don't really know what to tell you. They know you will be all right but there is no set 'treatment' outside of meds and they can't even tell you what will happen because it's pnhe, not a disease with a set progression (be glad about that one).I also have some nerve impingement - it will heal if you give it a chance and are not impatient. It can cause all sorts of weird sensations and tiredness. I've found stretching, range of motion exercise, and exercise to help a lot. Hot baths also can help. Alas - you can't always indulge in this but it does help.Do yourself a giant favor and stop giving so much thought to your symptoms - focus on what works (most everything, right?) and not what seems to be going whack. You don't have any progressive nmd (als) or the docs would catch it - neuros can spot this a mile away so if he has a degree on the wall from anything but a mail-in university you have nothing to worry about. You are fully functional so go out there and function - take a yoga class, go to the beach, enjoy some music, whatever you enjoy and turn your thoughts on that instead of wasting them on this pnhe crap. Employ your family - challenge them to divert your attention (mmmm hint hint - chocolate and a nice dinner?) ;) Take my word for it - you won't get anything out of focusing on symptoms except for grief and there is so much fun out there waiting to be discovered - it's a shame to let it go to waste. Post for specific questions about symptom relief & people here will usually jump in with suggestions or commiserate with you; but if you don't understand something ask your doc (the one who examined you and has a degree will always be your best bet - plus it his job!) Hey, we're all here (sort of) with you so don't feel so alone!!! :)
 
ALS is systemic. They wouldn't find it in one part of your body and not another. Even in the early stages. Can you imagine a doctor writing something if he wasn't confident? I mean the EMG inpression is in stone. He wrote it, did not consult another doctor, or ask you to get a second opinion. If it was something else, or even possibly something else don't you think he would cover his butt? I have similiar fears so I know it's hard. Just try and put faith in something other then hell.
 
Hey, sounds like we are on the same BFS career path! Mine started just about 3 months ago with a twitching finger, but has exploded over time to be everywhere. Went to the neuro and had the EMG/NCT tests. The EMG was clear (I think, though its hard to read between the lines and sort through the comments), though the NCT showed some abnormalities in my leg and arm. Still, he says not ALS, or MS, nor Park******. He ran a bazillion blood tests - all clear. And tomorrow I go for a lumbar MRI. I remain scared and I have been through the emotional wringer, so you are not alone on that count either. My GP put me on lexapro and xanax and they have helped somewhat, especially the xanax when things start to build. You should see if you can get some meds to get you through this. Plus the "old timers" on this site have been a great help. Hang in there and keep us posted! You can PM me if you'd like.Mike
 
Mike - I truly wish you the best of luck. I really don't think your case sounds anything like **S, and even your EMG came back clear. You will be okay!JRO - yes, my husband is also being a little unsupportive becuase he feels like well you got your answer now stop. But how can I "stop" when I am still having cramps in my hands and feet and twitching like mad? Its so easy to say that to someone! Even my sisters are getting angry at me and won't let me talk about it so I keep it bottled up inside all day so no thinks I am a crazy person.
 
Yea, its like I could relax very easily if this would stop. Its like the cart before the horse. The dr keeps saying alot of this is anxiety related. Um, you have proof of that how? I wasn't anxious when this started!! No one else understands. I am so glad I found you guys.
 
My family is the same way. They are sick of me complaining all the time about this. My husband has had it with me so I just come here for support. It's hard sometimes cause I just really want someone to vent to sometimes. I took him to my neuro appointment with me so once he heard "benign" he figures I should just move on. Easier said than done.
 
Unfortunately, or more like fortunately...BFS is pretty boring...especially to those who have not expierenced it to the extent we do. Just remember...everyone twitches, shakes, cramps...all of that...just not to the same extent. When these things happen to them...they dont care, so why should we? That is how they look at this. You can ALWAYS come here to vent (or PM someone if you want to talk one on one, I dont think there is one of us that wouldnt respond back to you)...and even though BFS still may be boring for some of us here...we have all been in your shoes at one point in time...and we DO remember what it feels like to be terrified about all of these weird things happening. ~*~Amy~*~
 

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