Bfloyd
Member
- Joined
- Apr 8, 2012
- Messages
- 20
- Reason
- Learn about ALS
- Country
- US
- State
- Wa
- City
- 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
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