Hi Annie,
Thanks for the concern and support. I'm in a better frame of mind today than last night, though.
Dr. P. ordered a blood test for B12, vit E and copper levels. I have to check the copper thing out - that's a new one to me!
I'll be posting some info. she gave me that I think would be of interest to others on the forum. She's really very sharp and I'm really impressed with her knowlege of all the new info I've seen on MG. I do believe she's better that even my old fav. neuro I lost due to insurance changes.
I have absolutely no doubt that Chronic Demyeliniating Inflammatory Polyneuropathy is the cause of the other issues that have plagued me since my very first severe incidence with MG. Every single symptom describes my symptoms that are not MG that have had all the neuro's so confused. There is a high incendence of MG occuring with this disease. One of my old tests, evoke potential / nerve velocity, showed "something" that the neuro then expected to end up being MS. This disease is like MS except it attacks the myelin in the outer limbs instead of the spinal cord/brain myelin. I would appear to be taking the more severe recurring path, because over the years I am displaying the progression symptoms - right down to this new blind spot in my right eye.
The surgeon that coiled my aneurysm in January thought my blind spot was due to a type of stroke, but he had me see an opthalmalogist to rule out other causes, confirm stroke, etc. I had a field of vision test done Thursday, and he is puzzled. It is definetly NOT a brain stroke of any kind, shows up like glaucoma but I absolutely don't have glaucoma - he told me he's concerned, confused because he's never seen it look like this test showed. I put in a call to him today to check on the CDIP and how it would show when it starts to cause the reduced field of vision. But when I saw that on the CDIP progression symptoms, it was like a punctuation mark for me.
Anyway, my hubby and I decided today that I will apply for disability, we'll sell off some stuff to pay bills, I'll see if my boss (who is just wonderful, by the way) will allow me to perform accounting duties as a contract employee so I can cut my hours way back and get more rest. He suggested that when I had my last flare, then I started to pull out of it so...
This way I can devote more time to enjoying life to the best of my ability instead of spending all my off time resting to get ready to work every day.
And I can get more rest and hopefully slow this stuff down or even beat it (wouldn't that be awesome), having the energy to do the research into treatments etc. Also, my son just married last year and I'm told it will be a couple of years before they give me my second grandchild - my daughter had a girl 10 years ago that has been the light of our lives!
So I've got to stick around long enough to spoil that one too
and watch it develop like have I with Alexis. It wouldn't be fair to my son otherwise, right? And while I'm waiting, instead of resting up on off time to work full time, we'll actually get to do some camping and fishing this year!!! YEAH!!
You see, I really am an optimist, but I'm also a realist so my goal now is to enjoy life within my limits - maybe pushing them a little - and do my best to stay functional as long and as much as possible.
You take care and have a great night. Thanks again for the encouragement!
Quote:
Originally Posted by AnnieB3
Oh, Becky, there's so much they can do now for any kind of neuropathy! Don't you dare despair yet! And surgery should be the last option with back crap, even though many people opt for that and it is the only answer in SOME cases. My friend had a full spinal fusion and is in constant pain. It did not help her. But she has degenerative disc disease, which is different.
Have you been checked for a B12 deficiency? That's a place to start. It can cause neuropathy.
I'm glad you like your new neuro. Maybe she can figure all this out.
Don't wish for a stroke! You could have a partial stroke and then have to live as an invalid for who knows how long. I seriously think testing for some clotting disorders is a good thing.
I have no idea how hard it is to quit smoking. I never started because my Dad smoked. But you know it's bad on the circulatory system. You CAN quit. And talk to your doctor about CoQ10 to help with circulatory/antioxidant issues. They use that a lot in Europe. I take 100 mg. twice a day. And aspirin - or are you on that already? And you are in your 50's. Hormones - or lack of them - can wreak havoc on the body. Has anyone checked your thyroid or adrenals or anything else?
Don't give up. I really do know what it's like to have too much happening with the body. You have to work really hard on focusing on what is good and not the bad. I know that's hard but if you set yourself up for success, you can do it. Being sick is a full-time job and it does take a lot of work to feel good.
One of my favorite movies is Castaway. It's all about survival; physical and emotional. In the end, Tom Hank's character says "You never know what the tide will bring." Like a sail. Or health answers to make you feel better. Or waking up one day hating the taste and smell of smoke.
So don't give in just because you're a good person who happens to have something bad happening to them.
Annie
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