Still confused
 

I recently saw a rheumatologist who is an Ehlers Danlos Specialist. It was clear he had an understanding of other areas to some extent which is what we all need. He has confirmed I'm hypermobile and I have lots of eds symptoms.
He did however say that he doesn't see people with a presentation of neuropathies like mine in his eds patient population. He said he feels something else is behind it. Especially when I explained that it came on thick and fast after pregnancy with an awful malaise.
He checked me all over - more than any of g he neurologists I've seen have done - and he has highlighted what I already knew but didn't want to face up to. My wasting is bad and it's affecting my strength badly, my balance, my bodily support all sorts. My knees have lost so much muscle support they are moving about, my shoulders, my pelvis is real bad, hence complaining about my non existent bum padding.
He couldn't believe the neuro suggested triceps biopsy. He felt if he had gone to the biceps - the area I actually said felt very weak arm wise- then he didn't feel it would be clear. He was also very miffed that anyone would suggest lack of use as the cause. He is writing to my G. P and my original neuro (not the Neuromuscular guy I was referred to).
It's absolutely devastating but I have known this was happening, I have just had a Neuromuscular guy who was not willing to look hard enough. One who wouldn't even look at my body properly even though I asked twice. Thus was at a charge of £300 for 30 minutes BTW. This guy heads up one of the top centres in the UK.and everyone I spoke to ref second opinion kept reminding me of this.

The EDS guy mentioned limb, girdle dystrophy and I can see why as my girdle area is very badly affected. But I never heard of this presenting alongside full body sfn.

I don't think I will ever find out what the cause is before paralysis sets in.

The EDS guy confirmed what I know equally must be true - many tests operate at a baseline level and mumbling or processes underway beneath that level may not be picked up. So the whole your tests are clear so nothing is going on that directly affects your muscles line is complete nonsense.

He said autoimmunity may be the issue seeing as I have ankylosing spondylitis already which is autoimmune.

Now my face is getting absolutely hammered by sfn again as well and it's agony. Don't tell me off any moderators please, I'm not threatening anything, but I feel increasing hatred towards life and I just don't want a life like this at all. I'm 37 and I can't imagine what I have in store for me.