JoannaP79
New member
- Joined
- Jan 17, 2018
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- 2
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- Wiltshire
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- Salisbury
Hi all, I sincerely hope I don't insult you by posting here. I have a pretty horrible neurological illness and facing difficulty getting clear diagnosis. I'm not convinced it's als but have thought of PMA.
I have numerous rheumatic autoimmune conditions including sjogrens which has caused severe autonomic neurological damage, all small fibre nerves destroyed and trigeminal neuropathies. The issue is I have been wasting for 4 years and have lost significant muscle bulk and all muscle tone throughout my body. It looks very much like PMA. I have had numerous swallowing troubles and feel like breathing is difficult. I do have scoliosis now because of this which I feel may be contributing to breathing trouble. I've had numerous nerve conduction emgs and mri of all muscles. All came back clear despite the significant wasting. I have weakness but it's not what you call clinical weakness as strength tests I pass despite being so atrophied. My right sterno muscle has recently gone completely and so cannot tense this anymore. I had a muscle biopsy of triceps which was clear. Poss not a good idea as that muscle doesn't appear atrophied.
Saw a neuro recently who said when he sees swallowing issues it often turns out to be mnd. I don't quite believe this tbh. I have significant twitching everywhere and have for some time.
Emg tests have been very painful as time has gone on due to the damage to my muscles - whatever this is.
I have no clue what this is but lower motor neurons appear affected ( I'm self diagnosing here). I don't know if any of you here have PMA and whether diagnostic tests came back clear for some time initially. The wasting is very obvious visually and is causing huge issues such as scoliosis etc. Yet no explanation. It is body wide.
This has been progressing for approx 4 years. I have significant neurological pain with this also.
Thankyou all for your time.
I have numerous rheumatic autoimmune conditions including sjogrens which has caused severe autonomic neurological damage, all small fibre nerves destroyed and trigeminal neuropathies. The issue is I have been wasting for 4 years and have lost significant muscle bulk and all muscle tone throughout my body. It looks very much like PMA. I have had numerous swallowing troubles and feel like breathing is difficult. I do have scoliosis now because of this which I feel may be contributing to breathing trouble. I've had numerous nerve conduction emgs and mri of all muscles. All came back clear despite the significant wasting. I have weakness but it's not what you call clinical weakness as strength tests I pass despite being so atrophied. My right sterno muscle has recently gone completely and so cannot tense this anymore. I had a muscle biopsy of triceps which was clear. Poss not a good idea as that muscle doesn't appear atrophied.
Saw a neuro recently who said when he sees swallowing issues it often turns out to be mnd. I don't quite believe this tbh. I have significant twitching everywhere and have for some time.
Emg tests have been very painful as time has gone on due to the damage to my muscles - whatever this is.
I have no clue what this is but lower motor neurons appear affected ( I'm self diagnosing here). I don't know if any of you here have PMA and whether diagnostic tests came back clear for some time initially. The wasting is very obvious visually and is causing huge issues such as scoliosis etc. Yet no explanation. It is body wide.
This has been progressing for approx 4 years. I have significant neurological pain with this also.
Thankyou all for your time.