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Just a update. Had 6 month follow up today (got a call this morning for a cancelation space opening up) and seems unfortunately it is motor neurone disease. As well as the fasiculations/cramps/atrophy. There is also now brisk reflexes, spasticity, and more widespread clinical weakness. So...

Sorry, your right, should have read "all fingers fully", as opposed to not at all. As with all my effort, like in the video I can get them most of the way there. Except the little finger, but maybe that has to do with whatever is transpiring with those side muscles. Thanks again.

Thanks both. It's a weird one I know. I'll see what the neuro thinks of it when I see them. But its good to know its not something obvious. Yes, on both sides my fingers can't straighten now when wrist flexed, and they are naturally bent over like I'm trying to grab something when resting now...

Hey All, Well, 6 months and I'm back :) I won't take up too much time.... Myotonic dystrophy was a red herring unfortunately. So, back to neuro, appointment is still another 2 months away. In the interim though, things have become more focused. Main symptoms now are just the progressive...

Hello All, Just dropping back to update, and say farewell to the forums. Looks like they have pretty much honed in on the issue. Until the DNA test comes back, its probable, but based on observed Myotonia, history, other symptoms, and increased CK enzyme levels. It is (and its a long one!)...

Best way i could describe it, is it was a staggered start to a certain level, then everything seems to have found an equilibrium and is now going at what seems the same pace (not so much the same speeds, just all are progressing at the same time). The early muscle groups where definitely not...

Have a simple ish question for a change :) So part of this whole process I have had now quite extensive atrophy/wastage of arms, legs, shoulders, face muscles, and as of a GP check up this morning, the intercostal muscles. But, these are almost complelty symmetrical left and right. Plus as...

Thanks Nikki. That is good info to know. We'll, not good of course, but usefull. Yes, they have mentioned what will be available in terms of people once diagnosis is made. As you say, not a lot can access until a diagnosis. Will just depend if its mnd, ataxias/motor neuropathys or msa, as...

Hi! Whilst im waiting to be admitted back to hospital, i do have a question. Just on the planning side of things really. Assuming it does turn out as one of the MND's. So in 9 months i have gone from healthy, to bout a 30% loss of muscle mass/widespread atrophy in arms and legs (more in some...

Thanks for the reply. Yes, very happy with what they are doing and the diagnostic side of things speeding up a bit now. Yes, MSA is still a possibility, but it wouldn't be a classical presentation (much like if it was ALS it is presenting atypical) Its the one that would be "probable" if they...