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magistramarla
09-07-2007, 08:12 PM
Well, friends, I have a story to tell!
When I last saw the rheumy, he said that everything was normal EXCEPT the ANA. I do have bursitis, so he is giving me steroid shots in the knee and a NSAID. He said that he was concerned about the neurological symptoms that I'm showing, and wanted me to see a neurologist. He was making noises about CNS (central nervous system) lupus.
I saw the neurologist yesterday. This is what he thinks I have going on - spinocerebellar ataxia. It is a degenerative genetic defect that has been passed down through my mother's family. (my mother and aunt had alzheimer's; my uncle had Parkinson's, and arthritis symptoms and palsies were rampant in the older generation) Apparently, it's causing my cerebellum to atrophy, which is causing my problems with walking and movement, the neuropathy in my toes and feet, the Meniere's syndrome, and the Spasmodic Dysphonia. The reason that my ANA level was high is that as the stuff from the cerebellum circulates through my system , my body forms the antibodies to it, which is also causing the malar rash.
According to the research that I've done on this, there is no treatment for this problem. It just gets worse with time. It is a movement disorder, and it seems that I will probably progress form my trusty cane to a wheelchair eventually.
Here's the interesting part. He ordered some specific blood tests, so I stopped by the lab yesterday. Next Saturday, I get an MRI of the brain and spine, with contrast added into my spinal fluid. On Sept. 19, I'll go to his office for a complete nerve study. In the meantime, he wants genetic testing done. There is only one lab in the country that can do this, and it is in Worcester, Ma. They will send a specially-trained phlebotomist to my home or place of work to draw blood, then specially package it and send it flying to Ma. I talked to the school nurse today, and she just can't wait for them to come to the school so that she can observe and ask questions! This will determine exactly which ataxia I have, and which chromosome is messed up. I'll see the neurologist again on Sept. 24 (my hubby's birthday). He wants to talk to both of us that day.
So, it seems that I don't really have Lupus, but a very distant relative of Lupus. I do love this little family, and I enjoy feeling like a part of it. Hopefully, this problem of mine is close enough for me to remain a part of the family! I'll let you know how all of the wierd tests turn out!
Love,
Marla

Missy
09-07-2007, 08:20 PM
Hi, Marla -

I guess it's probably a relief to know what has been wrong, but still hard to start to adjust to this next phase of life.. I just wanted you to know that it's been great having you here and I hope you stay!!!

And, I'm thinking of you with all the testing and new research you will be doing.

Peace and care to you.......

Oluwa
09-07-2007, 09:43 PM
Hi Marla...
Modern medicine, even ancient medicine is interesting. The equipment. The process. The tests. How intricate we are made and how fragile we can be. I understand the feeling of curiosity and the relief of a possible diagnose.

I feel such compassion for you and yet admire your power to find a place of solace in the possible results. Hugs…tight ones… squeeze.

Care, support, compassion, love, understanding, friendship are not just for Lupus…we have it for all. All includes you, Marla.

In my conversation with God your name Marla will be said often.
Oluwa

Saysusie
09-08-2007, 01:38 AM
Marla;
Once you've become a part of our family, there is no escaping us! You are family (regardless of how distant a cousin you may be) and family is family!
Oluwa has expressed my thoughts so beautifully, so I'll just ditto and also give you warm, tight hugs. Please know that you are still not alone and we will still be here for you whenever you need us.
Yes, please keep us informed about your test results and how you are doing.

I wish you the very best
Saysusie

mnjodette
09-08-2007, 10:55 AM
What a relief it will be to know what road your traveling! I'm happy for the wisdom of your doctors, Marla, and hope that you will continue to be a part of our group even if the diagnosis isn't exactly lupus. Many of us have gone years without a diagnosis, so don't think you need to leave us just because you've learned that your illness is something else! I'll be keeping you in my thoughts (amazing that they're sending someone all the way from MA to take blood....wow!)

Jody

hatlady
09-08-2007, 12:00 PM
Ditto all the eloquence and caring above!

Sometimes just having a NAME for the condition helps more than you can imagine. My heart goes out to you in caring support, and I do hope you'll stick around here, we've grown friendships here!

magistramarla
09-08-2007, 12:36 PM
Thanks girls. I love you, too. I was looking back at my answers to ErinBonnie about growing old, and it may have been a bit prophetic. Maybe my body will totally break down, but I really, really hope that my mind doesn't. Jeff probably won't mind pushing me around in a wheelchair at all. I'm just not too sure how I'll feel about it.
I've told him that, more than anything, I want to travel while I still can. I want to see Rome, Athens, the site of Old Troy, Pompeii, and all of the Roman ruins in Britain. Not much to ask for, huh??
Marla

Saysusie
09-09-2007, 01:59 PM
Of Course Not!!! I think that it is wonderful to want to do those things that we dream about. My darling hubby tries very, very hard to make sure that I experience those things that I dream of. I've always wanted to visit the places mentioned in some of my favorite movies and books (Like Cannery Row (Cannery Row),Bodega Bay (The Birds), Rio de Janiero (Black Orpheus), etc. Many of those trips were with me on oxygen and using a walking cane!
It sounds as your husband is more than willing to do the same for you. I say, go for it! Visit as many places as you can!

Peace and Blessings
Saysusie

magistramarla
09-09-2007, 05:40 PM
I've been to Cannery Row, and I loved the whole Monterey Bay area. I found a secluded beach and sat (in the shade) reading the Aeneid while Jeff was in meetings. LOVED IT! I also enjoyed the sea lions and otters and the aquarium there was AWESOME!! The sea food there was also awesome!
Marla

mnjodette
09-09-2007, 06:48 PM
My husband and I have been laying out an itinerary of travel over the coming years (optimistically) and talking about what we want to see first. You have to go for it, I think, even if there are detours along the way. No sense sittin' around waiting for something good to happen...you have to make it happen, right?! I hope you see ALL of those places, Marla!

Jody

Saysusie
09-11-2007, 07:56 AM
Marla;
Like you...I fell in love with Monterey for the same reasons as you. As such, we go back at least once/year. Also, like you, I spend almost an entire day either on the beach or on the patio of our hotel room, looking at and listening to the otters and sea lions, watching the sea gulls, watching the boats come in and just enjoying the sounds of the ocean! Cannery Row is still my absolute favorite place. I try to imagine those places that Doc and the other outrageous characters lived, drank, and had adventures. I keep trying to find Dora's flophouse (LOL).
Mnjodette; You are absolutely right! Don't wait for happiness and adventure to come to you. Go out and make your happiness and embark on your adventures...come rain or come shine!!

Peace and Blessings
Saysusie