lotusbri
Active member
- Joined
- Oct 6, 2012
- Messages
- 30
- Reason
- Learn about ALS
- Country
- CN
- State
- China
- City
- Shanghai
I'm sorry I am posting here again, even though Wright says my EMG is clean (therefore no ALS). I'm just hoping that you all have read enough "updates" from people who turn out not to have ALS, to possibly point me in another direction.
I hate to repeat my whole story because typing has become so difficult (nearly impossible) and also because I don't want to bore/exhaust the kind people here that take the time to respond, even though it's extremely difficult for many of you (I'm forever grateful I promise). I will give the cliff notes version.
16 months ago, healthy as possible...eating healthy, exercising, working full time, loving life. Out of the blue I had a fainting episode and then many months of strange autonomic type things. I never fainted again (except on tilt table test) but had a lot of near syncope. I also became very intolerant to heat and exercise, my heart rate was unstable (racing for no apparent reason), insomnia (have not had a good night's sleep since all this began), and then a feeling of heavy (almost awkward arms). a year ago I had a clean MRI (doc says no MS), clean NCS, and clean EMG (although it was not an in depth EMG...only two arms and I don't remember the doc asking me to engage my muscles at all). Doc says all clean...blames it on anxiety and sends me on my way.
Fine...
I take steps to manage my anxiety, see a shrink, take anti-depressants, etc. I feel better emotionally, but physical symptoms progress.
Fast forward to about 6 weeks ago. Body starts doing very weird things. I feel a sort of internal tremor going on, by the end of the day I feel like my core can't support the weight of my body and I begin to "crumple" every evening like I can't hold myself up. I'm sent to Hong Kong (I live in mainland China) where I have a whole battery of blood work, another MRI, another NCS, CT scan, PET scan, appointments with rheumatologist and everyone says I'm fine. I ask the neuro repeatedly if he can rule out ALS/NMD and he skirts the question every single time. He never gave me a straight no although he doesn't suspect it.
Fast forward to now. My arms feel like they are dying more each day. I'm dropping stuff, typing is horribly difficult and I'm hitting all the wrong keys. Anytime I try to pick something up or raise my arms I immediately get cramping around my shoulder blades which radiates down my back and into my arms. I've had minor fasciculations over the last 16 months (I remember telling the neuro about them a year ago and not knowing the technical term telling her it feels like a baby kicking in utero...except they are all over) but now I have them all over. Just in the last week I'm now experiencing body wide cramping as well.
Once everything came back clear I took a sigh of relief and self diagnosed myself with BSF. Still....the loss of function in my arms and the cramping just doesn't seem to fit the bill. I'm scared to death I'm slowly becoming disabled and all my doctors are just sitting back watching the show.
I don't know where to turn or what else I could possibly be tested for.
I have a sleep study in December and I'm hoping they will do a muscle biopsy as well...beyond that I'm just flat out of ideas and I'm so incredibly tired of feeling like I have to figure this out on my own. I feel like I'm absolutely of sound mind. I love my life so much. I'm not kidding when I say I have virtually no stress beyond what's happening to my body.
please...
I beg of you....
any suggestions that you have are so greatly, greatly appreciated
I hate to repeat my whole story because typing has become so difficult (nearly impossible) and also because I don't want to bore/exhaust the kind people here that take the time to respond, even though it's extremely difficult for many of you (I'm forever grateful I promise). I will give the cliff notes version.
16 months ago, healthy as possible...eating healthy, exercising, working full time, loving life. Out of the blue I had a fainting episode and then many months of strange autonomic type things. I never fainted again (except on tilt table test) but had a lot of near syncope. I also became very intolerant to heat and exercise, my heart rate was unstable (racing for no apparent reason), insomnia (have not had a good night's sleep since all this began), and then a feeling of heavy (almost awkward arms). a year ago I had a clean MRI (doc says no MS), clean NCS, and clean EMG (although it was not an in depth EMG...only two arms and I don't remember the doc asking me to engage my muscles at all). Doc says all clean...blames it on anxiety and sends me on my way.
Fine...
I take steps to manage my anxiety, see a shrink, take anti-depressants, etc. I feel better emotionally, but physical symptoms progress.
Fast forward to about 6 weeks ago. Body starts doing very weird things. I feel a sort of internal tremor going on, by the end of the day I feel like my core can't support the weight of my body and I begin to "crumple" every evening like I can't hold myself up. I'm sent to Hong Kong (I live in mainland China) where I have a whole battery of blood work, another MRI, another NCS, CT scan, PET scan, appointments with rheumatologist and everyone says I'm fine. I ask the neuro repeatedly if he can rule out ALS/NMD and he skirts the question every single time. He never gave me a straight no although he doesn't suspect it.
Fast forward to now. My arms feel like they are dying more each day. I'm dropping stuff, typing is horribly difficult and I'm hitting all the wrong keys. Anytime I try to pick something up or raise my arms I immediately get cramping around my shoulder blades which radiates down my back and into my arms. I've had minor fasciculations over the last 16 months (I remember telling the neuro about them a year ago and not knowing the technical term telling her it feels like a baby kicking in utero...except they are all over) but now I have them all over. Just in the last week I'm now experiencing body wide cramping as well.
Once everything came back clear I took a sigh of relief and self diagnosed myself with BSF. Still....the loss of function in my arms and the cramping just doesn't seem to fit the bill. I'm scared to death I'm slowly becoming disabled and all my doctors are just sitting back watching the show.
I don't know where to turn or what else I could possibly be tested for.
I have a sleep study in December and I'm hoping they will do a muscle biopsy as well...beyond that I'm just flat out of ideas and I'm so incredibly tired of feeling like I have to figure this out on my own. I feel like I'm absolutely of sound mind. I love my life so much. I'm not kidding when I say I have virtually no stress beyond what's happening to my body.
please...
I beg of you....
any suggestions that you have are so greatly, greatly appreciated