Debbie

The questions FMichael is asking is why I was asking in my early posts about exactly why and how the doctors had arrived at their suggested diagnosis of SPS. It's why I was encouraging you to go back and ask for a full and detailed explanation of how they might have arrived at this diagnosis because dystonia is common with CRPS and it has to be ruled out before a diagnosis of SPS can be reached.

I had assumed that in getting to the stage of suggesting SPS, your doctor had already ruled out the much more clinically likely prospect of dystonia, possibly combined with other movement disorders associated with CRPS like myoclonus. You have been posting about your muscle wasting for such a long time and i was under the impression that this was something your doctors were already involved in looking into. Dystonia can cause muscle atrophy but it is largely due to lack of ability to functionally use the muscles because of the movement problems.

The differential diagnosis is based on clinical examination, testing and physician experience. I am not a neurologist but your should be able to explain to you how and why they have been able to rule dystonia/SPS and the myriad of other neurological conditions that cause very similar symptoms in or out. He or she should be able to do that by reference to your individual presentation.

You mentioned muscle dystrophy in your last post. Muscle dystrophy isn't the same as muscle atrophy - muscle dystrophy is the process by which muscle cell death occurs. Unlike atrophy, it isn't reversible. It's one of the reasons that the old name for CRPS was dropped because the 'dystrophy' part was misleading. There are relatively few people diagnosed who actually undergo muscle death although muscle atrophy is relatively common.

I think I asked this before and I'm not making a judgement but if you aren't very physically active you will experience quite significant muscle atrophy and weakness all over your body and you will also have pain and stiffness when you do try to move. Muscle mass is lost at an average rate of 4% per week when activity levels fall. Dystonia, SPS and other similar conditions have symptoms that go way beyond atrophy, stiffness, pain on movement and weakness.

I'm only saying all this in case you are perhaps in the care of a physician who is trying something because he or she feels stuck with nothing to offer or isn't sufficiently experienced in this area. You may be embarking on a treatment option that has potentially horrific side effects for no good reason. SPS is a very rare, terminal condition, its not like CRPS (however bad we think that is) and although you've not posted much information, I really think the more I hear, the more you need to stop and take stock before you go through with this.

Having been in the position you are with suspected SPS and feeling desperate, I know its hard but you need to be clear about what has happened so far and how you've got to this point before you go any further. Just my opinion.