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Bfloyd

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Apr 8, 2012
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Learn about ALS
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Richland
Hello , you may remeber me. I posted a couple times during that freeked out do I have ALS stage most go through. You helped in many ways but I don't know where to turn .. Ive had little clarity on BFS site and have only found one other lady with as much atrophy as I .. I had a bizzare list of symptoms that have been looked into but dismissed once again. Im sure I don't have ALS and have been told that and actually believe them. I've made a conscious effort to lose the health anxiety .. Only problem is someone's wrong.

The nuros will say BF, but refuse to dianoise BFS because of my atrophy. I've had 2 emg 9 months apart. Only thing that showed was a few back issues which I expected since Ive had major back surgery.

Before I went to the university I figured out one way to prov my Nuro wrong ( I was sent there with suggestion of muscle biopsy which he said I didn't need)

I had worked with a trainer 2 years ago and had my measurements taken and finally proved my point of atrophy. My problem started with slight weakness , breathing issue , and a ton of twitching , tugging ..Each place the twitching hit I had atrophy , lost 2 inches in neck, 2 in in calfs, 2 bra sizes and face litterly fell. Twitching and shakiness had stayed in neck and calfs mostly now. Neck is constant vibrating and im assuming that's why pulse is up.

I lost a good part of foot pad shoe size from 8 To a 7 in months Had to have my hearing aid remolded as each changed shape, looked like a bad diet gone wrong. Gyno ( whos been most helpful) thinks it is fat atrophy as he's seem the body change quickly but refers back to Nuro.

Since this started , I now have BP / pulse problem that Nuro said BFS does not cause.

well since I started twitching I'm left with a new BP pulse issue that my family Dr had to put me on BP meds, my vit d 3 which is 17 thank goodness gyno put me on 50,000 a week. And the weakness and muscle fatigue horrible , I can live with that too, Unfortunatly it makes chronic pain worse.
I finally asked family Dr who has seen the body changes why can't they sort this out. Her reply , if they say it's BFS and then find out its not it's a legal issue for them.

Cpk , emg clean.. All MRIs ok ..

Has anyone heard or known of anyone who's had such drastic body changes with BFS or is it possible test can be negative and a MND still brewing.

. I'm happy to listen to Nuro but something's wrong. I can live with annoying twitching and fatigue and pain but I'd like to keep the rest of my face ... Am I wanting a bad dianosis no buti know BFS can cause some havoc but this much , not from the BFS friends I have
 
Good Grief, sorry I wast typing on my phone and noticed I repeated 2-3 times a couple things that I'd didnt realize I'd put. I don't think I needed to say I have high BP 3x...
 
Your new measurements which indicate you have lost size don't mean that the loss of size is due to muscle atrophy. Anything in your body can atrophy (atrophy just means something gets smaller). In fact, your atrophy is not muscle atrophy and that is absolutely proven by your EMG (there would be findings in the EMG that would indicate a denervating process has occurred or muscle damage has occurred), so you have not proven your neuro wrong in the least . . . soooooooo . . . it appears that your neuro isn't ignorant after all (nice try). I guess all of those years of schooling and training-paid off for him/her.

Have I heard of people having such drastic body changes? If you mean smaller neck size and limb size, etc. . . . yep . . . it happens all of the time when people lose weight (it's actually quite common). If you feel the loss of your inches is still a mystery and you want to get to the bottom of it and you're not satisfied with your present physician, then go find another physician that will give you the answers you so desire.

To answer your MND question: NO NO NO and NO, you do not have any type of MND. I thought you said in your beginning sentences that you didn't believe you have MND. I guess those anxiety issues are still lingering, huh.

Oh, and stop trying to tie your VERY COMMON twitches to your issues. They are almost assuredly not related at all. By the way, in the time it's taken me to type this, I have had multiple muscles twitches in multiple places of my body. It didn't bother me in the least because they mean absolutely nothing. Why? Because everyone on this planet twitches and 99.9% of the time, it means absolutely nothing . . . well . . . until you talk yourself into thinking it does.

I wish you peace.
 
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Interesting for someone who's here to lend a helping hand your backhanded "wish you peace" with sarcasm is interesting. I'm well aware that I don't have als or probably anythin that's going to show on a emg. I've also have been through extensive massage theraphy school twice and in my teachers 40 years of teaching she's never even worked on someone with BFS. Twitching is common here and there for some they don't notice it, but to get hit with it out of blue very intensity with atrophy not many have had. This group has been tied in to some BFS people..so ya I get my Dr knows what he's doing as did the one at university .. BFS is a waste of their time and How ironic that most BFS people I've meet have had same issue with nuros. I don't have weight loss or losing inches would make sense. I don't spend all day on google as I made it clear that the health anxiety went pretty quick after given info from some here. Maybe I posted in the incorrect area , but for someone that sounds like they have a lot to say your sounding as ignorant.
 
Great just what I needed to wake up too, someone who "wishes you peace" but has a bunch of backhand remarks. Then to see that your "here" to help and don't even have a diagnosis. I'm not sure if your a bored Dr who has a lot to say, but I find it odd that you joined in 2008 and have time to post 1,133 times most pretty rude.

I"m not a complete idiot with extensive training of massage therapy and someone whos dealt with chronic pain after Co2 poisoning . (do you have something to say about how that affected my nerves, because the Drs don't see many who survive it)

You obviously don't have a clue that BFS can cause as many problems for people with extreme cases as other nuro problems. I think I would know if I had lost weight and that would explain it. I clearly stated that I don't have als thanks to a couple patient people on here a while ago. I don't hang out on google like you obviously do. You obviously have knowledge but not on BFS. And twitching is common here and there , but bfs the few I have support from are treated as rude by their nuros as well. So no, my very common twitches that only started 9-10 months ago are not so common.

I play tennis at a 4.0 level and have had to stop as any exercise puts me down for 2 days with muscle weakness and fatigue and that oh so common twitching that is 24/7. If you knew anyone experienced with bfs that would of been helpful, you obviously haven't spoken to any that have truly suffered from it. While I am trilled I don't have ALS, for someone that has time to lend a helping hand , educate yourself on BFS.

The best help I had was from an ER dr who suffers from it , whos a friend. Nuros, don't like to deal with BFS as it's just a chronic problem and hassle to them. They clearly see I"m having issues but wasted my time and sent me to the university....If you have so much time work on your manners , attitude , and expand your mind that not everyone has "common twitching" that does nothing to them.

Now who's the ignorant one? I can't believe this place calls itself a support group and welcomes questions......
 
I'm just curious if my last reply will be posted?
 
Oh, it's been posted.

You may have been better off if it hadn't been posted because anyone who has bothered to acquaint herself with the forum knows that Wright pours his heart and soul, as well as his extensive scientific knowledge, into helping people here.

He was one of the rocks that my family clung to earlier this year, when a close member of my family developed neurological problems sufficiently intense to put her into hospital for nine days; it was a very dark and terrifying time and we came close to a sort of death spiral into complete despair.

The people that we clung to here didn't make soothing noises and sympathise with us, they told us the facts as best they knew them; I read aloud the DIHALS, starting with the stickies and progressing on from there, for a fortnight and it was then that we were able to start rebuilding into life again. And that was also when I posted to express my gratitude to the people past and present who had given us that great gift.

Strange as it may seem to you, Wright uses his time helping others, a concept clearly alien to you. I'm sorry that you have lived the sort of life which makes you incapable of recognising it...
 
Wrights reply, was full of knowledge and common sense. I didn't read sarcasm in it at all. Just shows we read different stuff from the same message.
I also think that the wishing you well, was sincere and not sarcastic. Just depends on if you know wright or not.

Just for the books. BFS is never talked about or accepted as a condition here in this country. Body wide fasciculations with no known cause, are just that.........body wise fasciculations with no known etiology.

The EMG would have proved atrophy for a reason connected with your nerves or muscles........but Wright told you that.

It's terribly hard to accept changes in out bodies and even harder when no reason can be found. we expect answers in this age of quick fix solutions to everything. But sadly no everything has a clear cur answer or solution.

I really do wish you well and that's not sarcastic either.
 
I tried to be helpful without sugar-coating but then you had to go and say all of that stuff. Tsk tsk!

If you are convinced you have BFS, then why the hell are you here? And if you don't think you still might have ALS, why did you say in your post: "Has anyone heard or known of anyone who's had such drastic body changes with BFS or is it possible test can be negative and a MND still brewing?" A bit odd, don't you think?

P.S. I'm quite educated on those things BFS. I believe you've been pointed in the direction of Robyn to discuss BFS and she knows me very well.

P.P.S. I like my attitude. It's others like you that don't like it, because I simply call it like I see it. I have to deal with people like you on a public forum, so you then have to deal with people like me on a public forum. Oh, I almost forgot: I wish you peace.
 
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I like your attitude too Wright.
 
You have a great attitude Wright.
 
Actually he never responded the first time I asked a few questions months ago , some very nice people did .. And awnsered my questions and told me to let me know how things turned out. I have seen people post hundreds of time wasting post for months on end and that's not been my case.
As a matter of fact "grateful" , I pour hours into hundreds of people with tinnitus as a Hugh supporter finachially and emotionally on the ATA site. So I do know suffering and we give our time and encouragement to many who want to blow there heads off from ringing in their ears. The ATA would never let us talk to people like some of the post I've seen on here. ( not all ) Any of you that have tinnitus know what I'm talking about. I'm deaf in my left ear, fluent in sign language that give free to interpet , and have a train running through my head 24/7.

If you knew someone with such knowlege Write you could of just sent me back to Robyn like another member did. But you obviously like the strokes on here. Do you have to have ALS to get respect on this site by some. I awnser hundreds of questions a month to people that needs a few mins of my time, I don't do it for praise I actually suffer from it and know what I'm talking about... For a group that have a donate button on your pages some have no tact but will sure take my money.
 
Wright, who teaches EMGs, by the way, explained that atrophy shows up on an EMG. Hence, his comment that whatnyounwere seeing was not atrophy.

If you have gone from a more active life style to one rhat is less active, you will notice size chanvpges in muscles, but this isn't atrophy due to a problem within the muscle or the nerves that control them.

If you are suffering from profound fatigue and the neuro has not found a cause, it may well be that the cause simply isn't neurological.

SO, all we can tell you is that whatever atrophy you have isn't being caused by ALS or MND, because after several months,,there would be profound clinical weakness no GP would miss on an exam, let alone a traines neurologist.

You don't mention what heart issues you're having, or what blood pressure issues you have. Sometimes the two are connected, sometimes they are not. Have you seen a cardiologist to get it sorted out yet?

I'm assuming your NCV was normal as well as the EMG? Perhaps if one of your doctors feels a muscle biopsy is in order, he could order the test himself. Most hospitals will run tests, even biopsies, ordered by a physician.

Obviously, if you're unhappy with your neuro, you need a new neuro. When you don't have a good working relationship with a physician, you won't believe anything they say, as seen with your complete avoidance of the comments Wright made based on his years of experience in the field of EMGs, what they mean and what happens to the muscles when there are changes.

Sometimes people clash. It just happens. No one can answer every single person that posts here. But as Wright said, at one point, you said you didn't think you had ALS and had let that anxiety go, yet a paragraph later asked if it was possible your symptoms were MND related. He answered based on what you posted...having never seen you or your EMG report.

Is it possible your twitches are from your overdose to whatever you were exposed to? Is there a specialist that would know?

If you are dealing with severe pain, it can raise the blood pressure. And the heart rate. We can't know for sure, but we can know it shouldn't be a presenting issue with twitches caused by BFS or ALS.

Your atrophy sounds more like body mass loss rather than muscle loss. I have never heard of anyone losing size in their ears, for instance.

If your weight hasn't changed at all, are you retaining fluids? I found out that my latest breathing issues, despite exercise and loss of inches didn't correlate to loss of any weight. Low and behold, my BP was sky high, my pulse was sky high, and I am in congestive heart failure. 4 new meds and I dropped 10 pounds in a matter of days.

Don't be too quick to lump everything together. Are you on any meds that cause twitching or water weight? There are several for BP and other conditions, that cause swelling all over the body, one off the top of my head is verapamil, another is Neurontin, sometimes used for nerve pain and spasms.

Good luck, and though you probably won't believe it, no sarcasm was intended by me either.
 
Bfloyd

It's good to know that you apparently help out at the ATA but that is a paid organisation; only people who have paid to join get access to all those helpful things you are talking about. That is very different to this forum which is entirely free and run by volunteers; people can make donations here but they do not have to. You are skating over that fact in your attempts to slag off the volunteers here.

The problem with your posts is that every single one of them is based on a lie; you say that you know that you do not have ALS/MND when it is blindingly obvious that you do believe that you have ALS/MND. You seem to think that there is some sort of hierarchy of diseases and naturally your place must be at the top of that hierarchy; you want us to recognise your suffering and are outraged because people are not sympathising with you enough.

Why should they? The forum is here to help people live their lives as best they can, and to do that people have to be honest with themselves and with others. You are not being honest about why you are here, and Wright recognised that fact; perhaps if you stop and think and then start over you may understand that giving you what you want is not the same as giving you what you need.

Notme has given you important information that you can follow up, or not as you choose.

I would suggest that if you want to accuse people of being ignorant then it's a good idea to spell it correctly; people are more likely to take you seriously...
 
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