Fear of Muscle Biopsy?

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abbitBouncyBunny

Well-known member
I hope he still thinks I am boring, as aggrovated as I get with him it is still refreshing to be uninteresting to him. I'm a little nervous to tell him about my new problems because he was bringing up having a muscle biopsy done, I don't wan't that at all. I have not seen him since he took me off the backlofen, when he was on vacation the other neuro there wanted me to start kolonopin but I have not done it yet. Hopefully he has another option. He had brought up another medecine that started with a D but I can't remember the name of it. Wish me luck and send some prayers my way please. God BlessRandy
 
Back from the Doc and I know no more now than I did before. He did say he wanted me to come back in 6 months and talk about another EMG. After the last EMG he said I would not need another one and now he says in 6 months he may do one again. He confuses me and in return I get scared again. :( He told me not to take the kolonopin or anything else for it and just see what happens. He said it should go away and that he is confident that it will but I still don't feel reassured. Maybe it's time for a second opoinion. God BlessRandy
 
Did he say why he wanted you to have another EMG? Just curious. I really don't understand why he told you not to take the Klonopin. Was he the one who prescribed it?
 
You really need to ask more questions of your neuro and ease your fears. If you don't feel you can ask questions you should see someone else who you feel more comfortable with; however, if you don't ask the next one questions either you will be in the same boat. Yeah, sometimes they get testy if they think you are questioning their knowledge but you can phrase it so it doesn't sound like that. And who cares anyway if they get a little offish - aren't they working for you? If you are earnest and polite there is no reason for them to get snippy. Doctors sometimes order tests just to provide reassurance for a course of action - if it meant anything like a change in diagnosis it seems he would tell you. My doc didn't want me on klonopin either but he said why and it was good with me as I don't like taking meds unless absolutely necessary. It is very individual on both sides and remember that everyone responds from medications in their own way, especially with neurological syndromes (that's what my doc said and he's been at this for 30 years). Good luck.
 
Thanks for your post. I do ask questions and he either plays them off or he laughs at me. I told him I am not in a good place right now but it don't change things. I am glad he thinks that I am fine I just hate going through this. I'ts scary :confused:
 
He doesn't have a right to laugh at you anymore than you have a right to disrespect him in some way. It takes all kinds in this world and perhaps his kind is not your kind. Find someone you can converse with - there is no reason for you to be scared of this syndrome or for your health and if he can't make sense of it for you he's not doing his job (well, unless you are totally unreasonable which I'm supposing you are not). The worrying is robbing you of your enjoyment of life - if you can't control it, get some help with it and have a great new year.
 
Randy,I have had BFS for about 5 years and seen 5 neuros and been to a als clinic. I have had EVERY test done. Including a muscle biopsy. I currently take Lyrica and Klonopin. I have lots of twitching, cramping, neuropathy, pain, buzing, fatigue........you name it. I have looged millions of hours researching BFS and als. Including people with both. I have read your posts and would like to give you my opinion.1.) You have CLASSIC BFS. How it started, the oncoming symptoms........BFS usally starts with a virus or some other stress on the body(like an injury), AND anxiety. Anxiety ruins lives. BFS is a bad name for our condition. There is much more going on then benign fasciculations. BFS makes your nervous system go haywire. Your nervous system controls EVERYTHING. Think of it like the electrical system on your car. 2.) Everyone is different. I always rate BFS on a scale of 1-10. 1 being mildly annoying twitching and 10 being dang near debilitating symptoms. In my opinion 30% of BFS sufferers range from 1-3 60% 4-7 and 10% 8-10. Again it is my opinion but I have talked to hundreds of bfs and als sufferers. Honestly to include BFS suffering and als suffering is a stretch of enormous proportions. I started in the 3 range and would put myself at about 5/6. With a good diet and mild exercise I am doing faily well. I think bfs plateaus eventually, but will bounce a bit depending on your mental state. Bfs is always worse when we are physically sick. My symptoms go thru the roof when I'm sick.3.) You may have BFS forever or it may go away. Most people have some range of BFS forever. Once your nervous system gets out of wack its hard to right itself. Most neuros will tell you it will go away they believe that it is anxiety related and if they treat the anxiety the symptoms will disapear. A expierenced neuro however knows BFS truely exsists as a real disorder. No matter wether BFS goes away for you or it stays forever, do not let ruin your life. Once I owned my BFS as my disease that I am fighting, then things got better for me. I was always looking for some other disease that I thought I had. One day I just said "I have a disease called BFS". That was that. No more searching for als or some other rare disease. I used to hide my twitching but now I show people. :D) 4.) ANXIETY MAKES EVERYTHING WORSE!5.) Passing a neuro exam AND having just 1 clean emg is the golden ticket. You do not have BFS.6.) With or without BFS we can have other thinks wrong with us. We tend to forget that non-BFSers have: back problems, GERD, body aches and pains, headaches, dizzyness, asthma.............we are not exempt from other body malfunctions. Plus we DO get older. :crying: You can have other conditions, like your back, that can cause pain, neuropathy and other things that cause body discomfort.7.) GET A NEW NEURO ASAP! This person is not intrested in making you feel better. Your are right, it is a good thing that you are down on his list. However this is affecting your quality of life. You have a right to be healthy and happy. Our health is the number one factor in us being happy. Either see another neuro there or the better option would be to get copies of your charts and tests and go somewhere else and start fresh. BTW he is crazy for suggesting a muscle biopsy. You are not a candidate for that.8.) The less meds the better. Medicate if you must, but exercise and keeping your mind clear(hard to do) is the best remedy. My motto is "keep moving".9.) Please PLEASE stay away from those other sites. Trust me it will take you places you don't want to go, keep you there longer then you want and cost you more then you can afford. 10.) Stay here until you feel better. After that stay and help or put us far in your rearview mirror. Those that stay and help are saints. Those that leave are ones that are doing what they have to do to stay mentally healthy . Look forward to the time you have to make that choice! :D) PS: Repeating a emg is standard operating procedure for most neuros. They are not looking for als but for other things like neuropathy.Hope I helped. Good luckDD
 
Thank you inzTwoToneTunes!!!! That made me feel a whole lot better, can't beleive you took the time to write all that. Your AWESOME!The rest of you guys and gals are AWESOME too!I will be seeing another doc soon to by the way, He just will not explain stuff like this to me.
 
No they won't. It is rare if you find a doctor that will take extra time for his/her patients. One of my best friends, who has been a Doctor for over 20 years specializing in Internal Medicine, about 2 years ago decided to schedule hour long to hour and half long appointments instead of half hour appointments just so he could take time to LISTEN to his patients. He felt that in most cases they just wanted his time. Even though he has cut his income almost in half he says the personal satisfaction makes up for it. My current neuro is the least expeirenced of all my neuros but she takes extra time to listen and explain. :) There are lots of great people here willing to help. Trust me on this. Spend time here and you will feel better. A warning though every once in awhile somebody will post something scary or a bit unfounded that may make you swecond guess youe BFS. Don't listen to it! Stick to the vets and you will be fine.Glad I could return the help that I so richly needed in the past.DD
 
hey double d out of curiosity do you go to the providence neuro center on glisan in portland ? if so thats where my neuro is just wondering dont know if I have asked ya that before or not anyhow waving neighbor
 
Hang in there. don't be freaked out IF a new BFS symptom appears. You are probably on hightened body alert right now and can feel everything. Trust me on this. Just the other day I remembered a symptom that came on a few months into my BFS that really FREAKED me out! I had it for about a month and then it just went away. I have not had it since praise God. :) I can't even remember some of the others which is a blessing.You will be fine. I think you already have a pretty good grasp of it.God blessDD
 
You will eventually get used to it. Unfourtunately that is easier said than done, but we have all been there. If you think about it there were times in your life when your eyelid, or a muscle twitched but you thought nothing of it. You had muscle cramps, muscle tightness, a limb hurt or didn't feel right. All those things that happened were normal and other then being a annoience, it didn't freak us out. However once you get BFS those things will occur much more frequently, thus raising our anxiety level and anxiety raises our BFS symptoms.............................On and on the cycle goes until YOU decide to break it. I remember a vet years ago that eventually had enough and went outside and did cartwheels with his kids and ran around with them at the park and forced himself to except that BFS wasn't going to kill him. He just had enough.Don't obsess about obsessing. :D) That used to drive me NUTS. I was obsessed with my symptoms AND mad that I was obsessing! I couldn't understand that my body could be like this. I couldn't believe that I could not get past this. I used to BELIEVE strongly that one day a would wake up and the twitching would be gone. I would wake up and right away watch my calf waiting for a twitch. A couple times I would go a couple minutes without seeing a twitch and say "Its GONE!! Then like always it came back. LOL. Man whtt a bad time of my life that was. I lost time I will never get back. I used to stay home and curl up in fear while my family went out to do things. I missed my daughter crawling & walking because I was paralized with fear. bad memories. The fear of als is like a mountain of bricks on us. We try to run our condition down (BFS) and try to figure out what is wrong so that we are sure it’s NOT als. The truth is BFS symptoms mimic als symptoms. If it didn't we all would not be here. The reality is BFS is not fatal. Headaches sometimes are a sign of brain cancer but that is the rare rare rare exception. The same with twitches and als. The more the twitching the better. with als the twitching is very rhythmic and constant. once a limb loses the connection to the nervous system it has no nourishment and then begins to weaken and die. At some point once the muscle gets to a point of no return in its weakness it starts to twitch as a distress signal to the brain. It is saying "help we need nerve food". By this time it is too late and the muscle is to far gone. In als the twitching begins weak and gets weaker because the muscle does not have the energy to give off a strong twitch. Most als sufferers don't even feel their twitches. My favorite (and most experienced neuro) said be happy with your twitches. The more you twitch the more it says NO als. I love the big thumpers because I know my muscle is strong enough to thump! :cool: Disclaimer alert: Please don't hear me say small rhytmic twitches indicate als. That is not at all what I'm saying. I have big thumpers and small ones also. Twitching WITHOUT REAL, CLINICAL WEAKNESS, IS NEVER als. Real Weakness is the main symptom of als. Not twitching. You will get thru this. trust me ;) DD
 
Thanks again for taking the time to post, it helps alot. I am going to stop using the search option so much because yesterday I came across a post where someone was saying that the EMG test was not 100% I thought it was and that is what was keeping me going. Some of the more experinced people on here did correct him/her but still it sticks in my mind. My anxiety is through the roof today.Also I wanted to try and explain my rocking feeling again to see if this is what you guys and gals are experincing. It is mostly from what I can tell in my lower back, hips, and legs. (It kinda feels like, when you take both hands and grab ahold of a flag pole on a windy day and feel it shaking back and forth, on the inside of my body, and It just won't stop. It is scaring the crap out of me! Is this anybody's experience?Thanks and God Bless
 

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