Yeah even I find it extreme looking at how MS presents itself in most cases, whether it's PPMS or RRMS. And then there's the whole age of onset for the muscle spasms which is only narrowed down to under 6, highly unusual for MS to present such an extreme symptom at such a young age. Even if it can, very rarely, present symptoms in childhood. But doctor's also seem to hate giving more than one dx out at a time. And already they have me marked as suffering from hemochromatosis, which while it too can cause muscle spasms and again was dx'd and showing symptoms long before it should have (I was still an infant, 3 months old and had to be taken off the formula with iron, which was kind of unheard of.) but it largely is more of a problem for internal organs than muscles. Plus I do have my iron levels under control so long as I'm very careful about what I eat or drink.

As far as the MS goes, there's no doubt that I have that as well. I have the "appropriate" number of o-bands, lesions in the "right" places and meet the McDonald criteria, if one leaves off the severity of the muscle spasms. I've had EMG's done before getting the MS dx looking for some kind of peripheral nerve damage and there isn't any, although the test itself is abnormal just because I don't show any reaction to the spasms. I mean I largely don't feel them unless there's an injury nearby that they're affecting. I simply don't notice them, anymore than I have any concept of what stretching a muscle is supposed to feel like, I have heard people talk about the pulling sensation, I lack that. I don't feel it at all. It either goes or it stops and won't bend or straighten anymore. I don't feel fatigue in my muscles to tell me I'm over doing something or not. Even when it comes to lifting things, either my hands will hold it or they won't, though I've been able to judge that a little better and have been able to roughly estimate most of my life just what my capacity is for lifting. But I've never really felt my muscles "straining" until they're "strained". If that makes any sense at all to anyone. 50lbs or 500lbs was all the same to me when I was younger before the body fell apart at it's seams, and I simply can't get the arms to hold one or the other.

They've checked my veins, they're all fine, blood work is fine aside from the hemochromatosis which is very well managed, and a little bit low on the vitamin D which is expected with MS. I've had MRI's of my entire back, and aside from breaking due to the muscle spasms, there's nothing, well this latest MRI excluded which the doctor told me was nothing... I've been xray'd on pretty much every part of my body, I've had CT scans from the pelvis to the head. There's nothing there... or at least nothing beyond the usual brain, organ and muscles.

And it is frustrating in the extreme, because like you, I also feel as though there has got to be something else going on. I mean the people who administered all 3 of my EMGs were scratching their heads. The nerves are talking. They are chattering up a storm in what apparently my brain took to be nothing more than a child's tantrum for all it was willing to listen to it. They apologized for hurting me initially and we went back and forth about what they were talking about. They couldn't believe that the skin didn't even flinch when they stuck the probes in. And more than that, that I was able to laugh and carry on a normal conversation like they weren't jabbing me in the middle of a severe spasm that had their machines going crazy. In all the times any of them had administered such tests, their patients were wincing and flinching some even crying. While I was completely ignorant to the spasm, that they could, see, hear and feel to know just how bad it was.

That's not MS, that's not hemochromatosis.... the problem is "What is it????" No doctor yet has been able to figure that out, or even have an inclining so they blame it all on the MS.