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Sandra
08-31-2009, 05:09 PM
Hi all hope everyone is doing ok and forging onward without to much pain and difficulty. Thought I might confide a bit. I have really been dealing with things the last couple of years. It has only been recently where my rhuemy would diagnose Lupus. I have other auto immune issues that complicate her job. She's a good sorter though and the last couple of visits the Lupus has become more and more clear. In fact my next visit was to be in December and she asked me to come back early to discuss some bloodwork and what it is telling her.
I have been having many, many strange and complicated symptoms for a couple of years, oddly enough since an auto accident in Feb of 2007. I ended up with a whiplash and boy did I learn what that is about! Terrible! I am still going to physio. My rhuemy feels that the accident probably exaserbated things, I too believe that.
The episodes start with pain in my neck and spine, and then balloon into a whole gammit of symptoms, vision, headache, shoulder and back pain, breathing problems, tingling, burning, balance, cognative, my stomach just quites working as does my GI tract, nausea, insomnia, and frequent wakings from a sound sleep, spasms or cramping....just a real soup of illness. So my thrumy sent me to a respirologist about my breathing issues and he sent me recently to a neurologist, he did a EMG.
I saw my physiotherapist tonight and she shared infor about nervous system problems. She spoke of the phrenic nerve and the vaagus nerve. The function or (non-function) described my situation to a T. I am hopeful that maybe now I can get to the bottom of this problem.
I have spoken to everyone befor about "My Mind" and I learned a bit about CNS involvement. Now I am learning more. I am honestly a bit scared now. I have in the past always had this mind-set that said "nobody promised you a rose garden"....then I went out and made my own! I love life, and family and do everything that this body allows me to and am so grateful, there are others who are in deeper trouble.
But now I am wondering this seems is becomming much more serious. When I have these episodes the very breath I try to take is in jeopardy, and so painful. i have to sleep sitting up.As far as eating not such a big deal I can always eat tiny bites here and there; the cognative problem is getting pretty bad though, I don't think I will ever be able to work outside the home again. (I work in an office at home as we have a construction company)
so that is kind of scarey. And of coarse these nerves are what makes everything function so how about my liver ? kidneys?
I have read that Lupus can get real bad, even take ones life? What is the end cause? Is it CNS issues? Am I over reacting or am I am I kind of on the mark to this new stuff? Should I be asking my rhuemy some frank questions? I have lots I still want to do, should I do them now instead of later?
Sorry to sound so gloomy, I'm really not just want to be a good boy scout and "be prepared".
Anybody here have the issues I mention? How long? Are they reversable or controlable?
Thanks a big bunch, Sandra

Saysusie
08-31-2009, 08:38 PM
Because Lupus is a systemic disease, it can affect every part of the body; the skin, the muscles, the tissues, the organs, the blood. As such, there are many ways that the disease can become severe and/or even fatal. However, statistics state that death, as a result of lupus, comes from infection (we don't fight it well and the immunosuppressive drugs we take don't help), kidney disease (half of us have kidney involvement), and cardiovascular events (we have premature atherosclerosis as a result of inflammation, pericarditis due to inflammation, and some have clotting disorders).

However, if a lupus patient flares and seeks medical attention promptly, the flare is not that likely to lead to death, but keep in mind that lupus is a very unpredictable disease and, as such, we must be diligent in taking steps to avoid flare-ups.

Yes, you should ask direct and frank questions of your doctor. Insist that they respect your fears and your inquisitiveness and that they answer you. However, remember that we are here to help you as much as we can.

Peace and Blessings
Namaste
Saysusie