Help Needed - Battling Mental Fragility

I hate to do this but I dont know what else to do at this point. I'm trying so hard to get to a place mentally where I can start to heal because the past 6 or 7 months have almost put me away. There are alot of good people on this site who offer fantastic words of encouragement and support, but there are some people on here that dont seem to understand how fragile some peoples minds are with the whole health anxiety part of this syndrome and they seem to sniff me out for some reason and everytime I start to catch my breath and feel like I've had all the nessicary test ran, then they throw a few more at me that my doc should have ran, and they dont understand why he didnt run this or run that, and if he wont run them then I should find another neuro. I dont have that luxury of neuro jumping, and I have to be able to trust that my neuro would not intentionaly be holding out on any test that might explain my misery. He ran MRI's to check for MS, Tumors, Infection, Strokes, Stenosis. He ran blood work to check for Diabetes, B12, Thyroid, infection. And Sed Rate that would show any inflamation in my body to where he would know to check for cancer or Auto Immune, Sed rate was great. So I have to stop here I think, oh and an EMG to rule out ALS, Peripheral Neuropathy, pinched nerve, and muscle disease. Now I think I can stop there. Why do people keep telling me I need to make him do more test. Hasnt most of the crap been ruled out? Am I wrong for thinking this, I mean if he is saying I'm ok, and I'm not, and its because he didnt test me further, isnt he looking at a major law suit on his hands? I mean come on now. It has to stop somewhere, I cant afford to live in Neurological Limbo Hell any longer. My friends on here know who thereselves are and are welcome to PM me or email me, or call me for that matter. But I dont think I will be posting anymore because people who are on this hunt for the answer seem to only be happy if they drag people along on there ride, well stop the ride I want to get off. Thanks to everyone who supported me and even talked me down from the ledge a few times, you know who you are. Take care everyone, please. Huggs

To start with I I had very few tests - my GP checked my magnesium level and my CK then referred me to a neurologist. When I first went to the neurologist, she diagnosed me with benign fasciculation after talking to me and examining me - no tests were done. I am a doctor so had arranged my own EMG but this hadn't taken place by the time I saw her so she said I should go to the appointment anyway. The EMG was normal. I should have stopped there. But because I was in the throes of health anxiety, as you appear to be now, I felt that I needed more reassurance. I arranged my own bloods - you name it, I tested it - all normal. I arranged a repeat EMG without telling my neurologist which showed denervation/ reinnervation in the L quads, which just added fuel to the fire in terms of anxiety. I went back to the neurologist who re-examined me and said that apart from brisk reflexes in one arm (also freaked me out) that she found nothing to worry about, that the EMG abnormality was 'non-specific' and that she was still 99% sure that I didn't have ALS. That was 11 months ago (22 months after my BFS ordealed started) and I am still in one piece. I wish I hadn't gone for the second EMG - I should have trusted her and got on with my life.So to summarise, I don't think you need more tests. You are currently feeling very vulnerable because of your anxiety so when well meaning people on this site, who sense your anxiety and are trying to reassure you, suggest that you have further tests to put your mind at rest, they are are simply adding fuel to the fire of your anxiety. The opinions of these people is often wise and valid but since they have no medical qualifications, you are ultimately better to take the advice of the person who does, i.e. your neurologist - he doesn't think you need more tests and you should tak his advice and get on with your life, as I should have done 11 months ago.The definition of health anxiety is something along the lines of severe anxiety that persists despite appropriate reassurance being given by a health professional. So it is no surprise that you have residual symptoms of anxiety about your health, even though your neurologist has reassured you. If you can recognise this and concentrate on managing the anxiety, you will feel much better much quicker. I did this with CBT.When people are very anxious, staying away from this site can sometimes be a good thing in that it takes BFS away from the front of your mind, although tcontributors to these forums do offer reassurance when you are feeling fragile.Try not to worry so much .RegardsSimon

Thank you Simon, but to come to my own deffense, yes I have some health anxiety, but I was perfectly content with stopping after the sed rate. I knew my neurologist had ran all of the appropriate test and I would very much like to just take his opinion and move on from this and get on with my life, and that was my point all along. I didnt and dont want to be one of these people that just keeps going and getting test after test, in my case it really doesnt help, waiting for test results just makes me crazier. My post that I just made was pertaining to the people that seem to find it nessicary to PM me or post on my threads that the emg may not have been done in the rite spots or my neuro should have ran this test insteed of that test. Thats where I have a problem. I would not want to instill doubt or fear in anyone I talk to on here and I just dont understand why some people just throw stuff around without thinking how what they say or suggest could or may not be helpful, that it may push someone backwards and cause them to doubt there doctor or themselves for that matter. I didnt want to offend anyone and that is still not my intent, I would just like some people to realize that not everyone can afford emotionally or mentally to keep chasing after an answer after so many test have been exhausted. Neurology is a somewhat scetchy proffesion anyway, theres alot that can go on neurologicly that doesnt always have an explanation, which can be a bitter pill to swallow, exspecialy for people who are combating health anxiety. Throwing out statements that one should have more test can be very distressing to someone who is scared but may have already exhausted their resources, which I have. So I have to find a way to make myself believe what I have been told by doctors and find a way to accept my new body and make it as healthy as I can. Thanks for always being supportive Simon, I always enjoy hearing from you. And by the way, where did your pic go, were you in a kilt? )

Thank you Simon, but to come to my own deffense, yes I have some health anxiety, but I was perfectly content with stopping after the sed rate. I knew my neurologist had ran all of the appropriate test and I would very much like to just take his opinion and move on from this and get on with my life, and that was my point all along. I didnt and dont want to be one of these people that just keeps going and getting test after test, in my case it really doesnt help, waiting for test results just makes me crazier. My post that I just made was pertaining to the people that seem to find it nessicary to PM me or post on my threads that the emg may not have been done in the rite spots or my neuro should have ran this test insteed of that test. Thats where I have a problem. I would not want to instill doubt or fear in anyone I talk to on here and I just dont understand why some people just throw stuff around without thinking how what they say or suggest could or may not be helpful, that it may push someone backwards and cause them to doubt there doctor or themselves for that matter. I didnt want to offend anyone and that is still not my intent, I would just like some people to realize that not everyone can afford emotionally or mentally to keep chasing after an answer after so many test have been exhausted. Neurology is a somewhat scetchy proffesion anyway, theres alot that can go on neurologicly that doesnt always have an explanation, which can be a bitter pill to swallow, exspecialy for people who are combating health anxiety. Throwing out statements that one should have more test can be very distressing to someone who is scared but may have already exhausted their resources, which I have. So I have to find a way to make myself believe what I have been told by doctors and find a way to accept my new body and make it as healthy as I can. Thanks for always being supportive Simon, I always enjoy hearing from you. And by the way, where did your pic go, were you in a kilt? )

The tests that you have had rule out any of the sinister diseases that twitching rarely points to. I went to a top neurologist and I had an EMG and NCV, and also a thorough clinical of course and he immediately told me that I did not need any further tests and did not have anything wrong with my neurological system. It has been 2o months and I am still fine and still twitching although a lot less now I don't worry about it any more. I am sure that you are fine. The more you are anxious, the more you will twitch. I know it is hard. Even this year I was still worried just because it is easy to be gripped by the fear but you have BFS and that is all!!!Please take care.God Bless.Rachel

Hi Rachel, and thanks for chiming in, but if you read some of my earlier threads or post you would see that the twitching is the furthest thing from my worried mind. I've had tremendous anxiety because of my difficulty in walking and feelings of off balance, and the bilateral ankle clonus along with the brisk reflexes. These findings usually are not a recipe for something benign. But I'm trying my hardest to adjust and move on. But am still dealing with alot of doubt. But thank you for your words of encouragement and I'm glad you are doing well. Take care.

Pinprick, has anyone on here had as much trouble with there walking as me, or am I the only one.?

Everyone here has had problems with walking. That's what BFS does to you.

Mommy, I have had absolutley no testing. I dont intend to unless things change for the worse. So maybe being a little ignorant ( like perhaps I am) is a good thing?? Lots of people seem to have had lots of testing, all coming back 'negative' but still want to do more testing. It is your body, your decision. It appears to me you have had all the testing/professional opinion YOU need to satisfy yourself ( not others) that you are 'OK'. Leave it at that. If at some stage YOU feel the need more testing, again that is your decision, no ones elses. People on this site will share thier experiences and express their opinion, whether it be based on fact, fallacy, founded or anecdotal. In some ways that is human nature. And for the most part I would suggest the intention is genuinely not to hurt or upset or worry people but try to help you and also to try and help themselves, whether it be venting, 'DRing' or sharing their issues. Opinion can be candid at times ( the emotional/physical state of some when posting proabably has something to do with that), but for the most part I find what i read here useful..sometimes worrying, but mostly useful. This site will give you 'warts and all' with out a doubt,as people share their opinions, theories, experiences ( good and bad). I think it is a case of us individually deciding what we wish to take on board as useful/helpful and dismiss that which we find not 'useful'.cuRodger

Rob, this thread was started over a month ago, and hardley anyone posted on it, and now everyone is, LOL. He didnt actually say my unsustained clonus was nothing to worry about, he just said that he cant find whats causing it, and that my anxiety was making it worse. I was happy after my emg, if you read again my first post on this thread you will see what happened, but my biggest worry rite now is neuropathy because the sensation in my lower legs is not normal and my feet swell sometimes and clothes feel weird up against my skin. I'm trying to cope but its hard when your sensation to touch isnt normal, its kind of hard to ignore and just go on about your merry way u know?

Rob, I dont remember you telling me that your legs go numb from butt to toes like that, how does that not bother you?? Are you sure they are actually numb as in you cant feel anything, or do they just feel like they are numb till you touch them?? Mine feel like they are numb until I touch them, but when I touch them, it feels weird, like not a normal sensation. Hard to describe, but I guess it doesnt really matter.