Help for Serious Issue Needed

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mommyLDN

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I've read enough of all the post on here and it is so obvious that I got something more serious going on. I dont know yet what, but I have a good idea, and I dont want to scare anyone on here with updates. Thanks to everyone for being so understanding and patient with my questions, and huggs and blessings to all. ThanksRobynn(mommyLDN)
 
Hi twin thanks for responding, but its these scary symptoms that are taking over my life, I cant even go get in the shower, I dont know what to do anymore, my legs feel so weak, and they hurt.
 
ml, you just saw a neurologist a few days ago. Did I misunderstand - didn't he say that you were fine? You think that your symptoms are so bad that you can't get in the shower, yet your neurologist was unable to find anything?This just doesn't add up.Twin2 is right - whether you have BFS, MS, ALS, Spontaneous Head Explosion Disease or anything else, the first thing you need to do is get on anti-anxiety medicine. If you're already on it, you need to try a different one. In any case, talk to your primary doctor ASAP.Stop googling symptoms, stop obsessing over things, stop going to ALS forums. Get the help you need.
 
Mommylondon,Please do not feel you have to leave the board so as not to upset others. I have upset a few people on here but have also helped others too. You can never be all things to all people. In any event, you should stay if this board helps you and you do not know for sure what it is you have. The majority of people here have neurological problems of various degrees with an unexplained cause. This is your situation. It is a difficult one to be in and you need support. The fact that your weakness comes and goes is a very good sign (You said you could walk better when the neuro was encouraging you). If you feel your weakness is not related to your anxiety and your neuros are not taking you seriously then be a fierce advocate for yourself. Ask for a list of all the things you could have and why they don't think you have them. Ask for a list of tests that could be done to uncover possible causes. I apologize if I do not have your history correct but if you had sudden onset weakness you might want to consider whether you have a mild form of GBS or some other autoimmune situation. The fact that you are not totally paralyzed means that if you have this it is a mild form so no need to panic. But if you do have it it is treatable and your doctors should consider it. I considered it in my own case even though I did not have weakness but did have sudden onset of bodywide twitching. In researching it, I learned there are mild forms and atypical forms and it can be overlooked. It is usually thought to not involve brisk reflexes but there are articles where brisk reflexes were involved. I mention this not to scare you but to support you in making sure everything is considered and that treatable issues are not overlooked. I had the experience of being dismissed and know it can easily happen. I also know anxiety can cause weakness and lots of other stuff so that may well be your problem too. You should do all you can to help yourself. I am very optimistic for you and know how difficult this journey is. Let us help you if we can.Krackersones
 
MommyLondon - you should read the post by JB15 from back in Febrary - it's the first topic if you go to the "The Support Group" page, and is entitled 'a note of reassurance'. You will notice that this peron had brisk refexes and ankle clonus. S/he says "Also, like some of you, I have brisk reflexes too, and even some clonus in my ankles. All from anxiety he says." Thought this would help reassure you.RegardsSimon
 
Yes Simon I did read that. And it did reassure me quite a bit, I just wish people like that didnt just disappear, I wish people like that didnt just disapear, it would be helpful to know how they are getting along, it also scares me a little because what if they did end up with something bad and just didnt come back here, because they didnt feel they belonged on here at that point or didnt want to scare anyone. I dont know, I'm trying to change my perspective, I dont even feel like I twitch enough to be here with you guys, I barely notice my twitching because I'm so consumed with feeling off balance and the thought of the fact that I have ankle clonus. But I'm trying. And thank you for responding and taking the time you have with me. I do appreciate it.
 
ml~ I really hope you stay on here because it is one of the few (maybe only) places you can chat with people that have some things, maybe not all, happening that you also do. I truly was very weak last summer in one leg and one arm after my twitching had gone on for a couple of months and then they slowed down except for the one side. I was very concerned that the twitching was not as much and weakness had set in. I became so upset that I think it made my body respond even worse. I would actually fight with my husband because he would get on this site and find someone with any of those same symptoms to help me out because I just KNEW they were okay but I was not. I wanted to twitch like they did, not feel sore on one side specifically for months. I would keep saying to my husband,"but do they say they also have ____going on too?" I could not exercise and I had been a healthy woman that worked out five days a week and ran in races. I could not walk the block. When I stood in the shower and tried to balance on my leg to shave like I always had before, I could not support myself on the one leg. If I tried to go outside with my kids and bike it would trigger off weakness and I would get sick to my stomach. I could not even use my arm to wade in a pool with them. Like I had mentioned to you before, I truly thought I would have to get a wheelchair on vacation at a theme park. My husband and kids would stand with me and pray that I could just get through the day with them there. My leg would shake after any exertion. I could not wash my daughter's hair because my arm would get so fatiqued. I say all that to say....I was for sure last summer that I was dying. Once I started some medicine, saw a third Neuro that I finally felt was a human being and good at his profession I was able to take it day by day. This past year has been rough and scary. Flash forward to now, I can work out on certain cardio machines again (I may never run another race again, but oh well!) I can lift weights, wash my daughter's hair, ride a bike, walk with my kids...etc. I have some days that my arm hurts, I still ache in that leg sometimes. But overall I have improved. I never thought I would. I hope you do indeed stay on this site. Please know you are in my thoughts and prayers, Blessings. Carrie
 
I have bad pain in left ankle and leg sometimes arm I feel like i am going to fall down from dizziness vertigo lightheadedness every single day I have had this stuff going on now for 10 months and 16 days but whos counting I get leg jerks neck jerks eye twitches arm hand feet EVERYWHERE at first they were just random pops here and there but now they are more pronounce my legs feel weak today and sometimes my arm does to also my neck but not always I get twitches and slight cramps in face and legs the dizziness is one of my biggest symptoms ...my leg shakes with exertion so does arms and hands i fatigue easy and tire early in the day I have been checked out thouroghly probably as much as anyone on this board more then most because of my anxiety will not let me believe I am not dying I go check als sites and ms and pk and yada yada yada all of them but my neuro who has been a neuro for 17 years and a reg doc studying neurology for ten says I do not have als I do not have ms ...as a matter of fact she says she does not suspect anything neurologically wrong with me at all she said 99% sure I dont have any of the nasty diseases that we all fear ...but guess what even after her and numerous other docs telling me I dont have any of that I still think I do alot probablly 80% of the time ....I can make myself dizzy with fear make myself twitch more by focusing ...make everything worse by drinking and self testing and reading the als sites which will scare the s&h(i,T out of you ....if your doc did a emg and all the tests and says you have BFS ....then trust him or go get a second opinion to reassure your self I had to go to the neuro 5 times in ten months going again fri for a reflex check and still scared 95% of my prob is anxiety even people with als dont freak out like we do on here ...if you have read their sites I am sure you have noticed they are telling jokes and laughing all the time alot of us on here are ruled by anxietyHope you feel better and get the meds and the reassurance you need ....Hugs
 
Trip, the very few times I have ever visited the ALS forum I found the same thing. Very nice, calm people on there with a strong faith. I will say one thing though that helped me oh so very much that I want you to try....don't go on those boards! ;) I actually didn't even get on the computer for 7 months except to read my mail. I had a couple of times I wanted to find out if something I had going on was possibly something any other BFS'er had going on....so I would ask my husband (I only did this two or three times to him!) to go here as a guest and put it in search. I would not even stand over his shoulder. I would sit across the room and he would read to me. I found that last summer when this started I googled and then would have so much anxiety over what I found. I just know who I am and so I told myself "enough" and stopped looking up anything at all. I finally joined on here this past month because I knew I was much calmer than last summer. But I still have found that I get more worried after being on here sometimes. When I was pregnant with my first baby I had some very uncommon things take place (imagine that!!) I would look up my symptoms in the infamous "What to expect when you are expecting" book and it would say things like, "this could be basic indigestion or.... pre-eclamsia and you need to go to the DR immediately...." I say that in sarcasm, but not much as I found that it basically could be nothing or something HUGE wrong!! :LOL: I miscarried that baby due to problems with the baby. When I became pregnant with my son later that year, I started having bleeding...every day for 11 weeks. The book said "if you have bleeding for three days in a row, go to the hospital immediately"...well, I actually laughed because I had already been bleeding for over a week...I threw the book away. And while I was an atypical bleeder, I have a beautiful (well, handsome!) 11 year old son today! My mom told me something that has stuck with me....we have WAY too much technology today that tells you more than you need to know and just enough to worry you to death. I agree. I am just glad 11 years ago google was not around for me to put in "gestational bleeding..." ;) I am just saying...stay on this board for questions! You won't find any peace on the other boards as those people truly have ALS. You do not. :D) Blessings....Carrie
 
Live with what, u dont even know my situation obviously so back off, and dont coment unless you are aware of what my situation is.
 
Had what for 21 yrs, please dont comment on my post when you so obviously have no idea what symptoms I am concerned with. I'm not trying to be rude, but I'm really getting tired of being told my fears are unfounded.
 
I agree ...with runner and mommy ....this is a place for support not sideways comments that are negitive in nature ....if you have had it for 21 years ...then you should remember how scared you were ...when it first started right how would you have liked someone to say ...things like that too you .....
 
Thank you tripper, I know you know where my fear is coming from, and I am making small strides at getting it under control, One day at a time.
 
I dont have a lot of anger, just frustration maybe, and tired of being judged here lately. I'm not on here trying to judge anyone. But its not anger or I would have already went off, but I dont feel that is respectful to this forum and I dont feel like its the place for this sort of thing.
 
I havnt had an EMG though, he doesnt see a reason to do one when there is no atrophy or weakness. So I dont have that one under my belt yet, and he didnt say it was all my anxiety, he just said my anxiety was making my symptoms worse.
 
But that's basically the exact same thing. Anytime your anxiety is making symptoms worse (which he DID tell you, and which seems pretty obvious), that's a pretty good sign that what is going on in your body is not particularly worrisome. You just have something along the spectrum of overstimulated nerves/anxiety/too much adrenaline. Once I figured out that I could control my symptoms just by focusing or not focusing 100% on them, it was a huge mental leap in my early days of BFS.If you don't think your doctor told you anything, you are just being nitpicky. No you don't have a quote-unquote "diagnosis", but then again most of us don't. I never got a diagnosis. What your doctor did tell you is that an EMG isn't warranted in your case and that your anxiety makes your symptoms worse. After that you sort of have to read between the lines.No one's symptoms here are caused by ONLY anxiety. There is something going on with just about all of us. But when you can make your symptoms get better or worse just based on how much you are stressing about them? That's all you need to know. The big scary diseases simply don't work like that.
 

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