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olly

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i have predominatly umn symptoms, but i have limb girdle muscle weakness. last year i was told i had hypotonicity(loss of muscle tone)in some areas that have spasticity and hypo reflexes. how is that so? weakness and hypotonicity are lmn signs and the others are upper. i suspect that it is pls because of my slow progression, but i found out you can have predominatly upper als that is slow.does anyone have hypotonicity/hypotonia? i asked my neuro but he just brushed it off. this is driving me mad.(please read my story on thread "help ,please read me")
 

mamaoftwo

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Hi Caroline - I'd imagine that the hypotonia is where the muscle atrophy has occurred (lmn symptoms) and the hypertonia is the spasticity from umn symptoms. I think any PALs would have both in order to qualify as a true ALS patient rather than a PLS or PMA patient.
Yes you can have mostly upper motor symptoms for a very long time. There is a PLS section on here. Look at the top of the page and try posting in the PLS support group if you havent already. I don't understand why your neuro is brushing it off. If indeed you have been a long term PLS'er and are now becoming an ALS patient, you have every right to know.
 

olly

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thankyou mammaof two. i dont think my neuro is qualified enough in this field. in a small hospital in the uk they may see only a handfull of als patients. ms is very common in my area more young ones getting it. ithought it was but mris clear. had all tests done and all normal . ive only heard of emg last month so im going to ask for one.im going to put my foot down and demand answers. i think they are reluctant to diagnosed as not sure als or pls. but hypotonicity is a lmn sign
 

mamaoftwo

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Hi Caroline, Im curious. In the UK, where do you stand in terms of longer term care - so for example, if you elect to vent, is the patient entirely responsible or does the NHS help bear some of the cost.
I have no clue how this works anywhere - even here in the US but it would seem desperately unfair if the decision to vent is the preserve of the rich only.
 
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