Quote:
Originally Posted by ElaineD
MAT I have so many neurological issues I can't count them all. And most of them fall into 'unclear diagnosis' and 'no real treatment exists'.
In the long run, once major terrible things that CAN be treated are ruled out (like cancer and diabetes and chemical poisoning, nerve damage from spinal compression, brain tumors, and so on) what is left is treat the symptoms and learn to live with the condition(s).
I just saw the epilepsy specialist because my neurologist wanted to be sure he wasn't missing something. He wasn't. I don't have epilepsy, even tho I have shaking and trembling of my limbs, my head, my torso, and completely collapse to the ground.
The epilepsy specialist speculates that the problem is probably related to my autonomic system disorders, and that the messages don't track correctly so I fall to the ground (it isn't POTS, by the way, which is related to blood pressure).
That still doesn't explain the shaking and trembling, which happens sometimes several times a day.
The key is, if the medication I was talking to attempt to moderate the problem, Depakote, isn't working, and it isn't, then there isn't really anything else.
So I am just stuck here.
We all want clear diagnoses, with really accurate treatments that stop the problems in their tracks.
What I do know is that I have a seriously disordered immune system, which attacks my organs/systems and leaves me with damage.
That's about it. I treat with some medications, wear leg braces, and don't stay in the house alone without wearing my medical alert, and don't ever go out alone. I can't drive any more.
Thank goodness for these forums.
Hugs, ElaineD
|
Elaine I'm always humbled when I read of your struggles with such horrid and disabling symptoms - and your stoicism and warmth to others.
But although I share many of your symptoms, to a lesser extent (maybe because I think I'm younger than you so haven't suffered them for as long and also because mine have a different cause), I do now have a firm diagnosis of a serious autoimmune disease (Sjögren's is on a par with Diabetes and significantly increases Lymphoma risk as I'm sure you know), which, if treated at source, should in theory make the SFN manageable. If it's not already too late that is.
I have a very overactive immune system rather than an immune system disorder - and I think there is a difference although I know it's very possible to have both. For example I never seem to catch any bugs at all even when taking immunesuppressants. But drug allergies, anti depressants and anti convulscents will knock my immune system for six by messing with my serertonin levels and my brain pathways. The last one I tried, Cymbalta, had me so weakened by retching, migraines and psychosis that I got pneumonia, pancreatitis and sepsis all in the space of six months!
I looked back at an old post of yours on the Sjögren's World forum (at least I'm fairly sure it was you!) and read that you believe that you can only have Raynauds if your hands experience colour changes too.
I think this is actually not the case and the colour changes can affect any extremity, and for all we know can affect our organs too. And yes hands are most commonly affected - but hey- when were either of us common?!!
If you are still doubtful about this then you could google images of Raynauds in feet and I'm sure you will recognise the pictures as I do. In fact I have several friends who have been told that the burning and numbness in their feet has been caused by Raynauds. They don't even have this parasthesia or cold in their hands at all. I think the two can overlap very often - but the colour changes do signify that Raynauds is definitely somewhere in the mix. My late dad, grandad and uncle all had diabetic neuropathy long before their late onset diabetes was diagnosed and none had Raynauds whitening of toes as far as I'm aware.
I am just not ready for resignation about all this. I had to fight hard for a histological diagnosis of Sjögren's and, once the possibility of co-existing Scleroderma has been excluded (hopefully - it's a truly horrible disease), then I will review my options once more. My lip biopsy showed 100% definitive for Sjögren's syndrome.
Meanwhile I'll just have to live with widespread flaring SFN pain because Gaberpentin and others made me very ill and if the Cellcept doesn't work, then I'm told by my neurologist and rheumatolgist that I'm all out of options apart from Pregabalin - which I wouldn't touch for love nor money!
Mat x