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Old 04-15-2009, 04:15 PM #1
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Default This is my life...long read, but expains a lot

This may be more than you want to know; and I will understand.

I had a migraines for years sometimes rebounding so I stopped the pain meds...didn't help. They think some of the lesions I have are from the migraines...they (the mayo clinic) that migraines can be a progressive disease now....They are not to be taken lightly lady. I have had RA for years, and got the lupus diagnosis in 1979...to which I never believed I had lupus. Then Fibromyalgia in the 80's before it was the 'catch all' and I know I have that because there is not a criteria that I do not have. I functioned and raised to active kids, worked most of that time at Banks and took care of home and hearth etc. LOL. Then had my ovaries rupture in1987 and had a opherectomy...NOTHING left. The Fibroids were attached to the intestines and they had to remove some of them .... I got and infection and was really sick in the hospital 4 months...Left thinking all would be right with the world. Then all the autoimmune symptoms came back with a vengeance and was sick for years. My Liver was very sick and they thought and talked to us of a transplant? Then it cured itself (GOD) and I woke up one morning paralyzed from the neck down. Ambulance and had a c5/c6 fusion using bone from my hip in 1992, was a somewhat new surgery then. I recovered from that the disk and the vertebra had been eaten away and they could not discover why??? I was without even for a long time, just the flares and the liver kicking up sometimes. I have been on I.V. steroids, Methotrexate, Neurontin, Lyrica, so many drugs that mess with your weight, that I was always a 120 lb tiny thing and now this...I am trapped in here (this fat) and I hate it. I had a heart attack last June and they learned I no longer have cartilage in my feet...(the same autoimmune response as the neck in 92?) I have advanced glaucoma, atrophy of the brain, and those nasty white lesions everywhere my CD of the MRI of my back and brain lights up like a Christmas tree, The Neruo called us up and said it is not in her head! It is in her Brain! LOL. I have herniated and bulging disk up and down my spine, L/1 is fractured and C/1 and C2 are basically disintegrating. I see Neuro on the 28th to discuss the deterioration of the feeling in both legs. They said it was MS but now are not sure????

In my family whatever you do you do NOT discuss what is wrong with you. Over the years if I missed a family activity or was 'sick' trust me I heard about it... whomever... My Mom and Dad to whom I was caregiver died with the attitude That I was a weak person; giving in to pain. I was there for the 24/7 for 5 years and really longer but they did not need me like at the end. I am over all of that, I just want you to understand that I understand!
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Old 04-18-2009, 10:30 AM #2
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Quote:
Originally Posted by tingsdonwrk View Post
This may be more than you want to know; and I will understand.

I had a migraines for years sometimes rebounding so I stopped the pain meds...didn't help. They think some of the lesions I have are from the migraines...they (the mayo clinic) that migraines can be a progressive disease now....They are not to be taken lightly lady. I have had RA for years, and got the lupus diagnosis in 1979...to which I never believed I had lupus. Then Fibromyalgia in the 80's before it was the 'catch all' and I know I have that because there is not a criteria that I do not have. I functioned and raised to active kids, worked most of that time at Banks and took care of home and hearth etc. LOL. Then had my ovaries rupture in1987 and had a opherectomy...NOTHING left. The Fibroids were attached to the intestines and they had to remove some of them .... I got and infection and was really sick in the hospital 4 months...Left thinking all would be right with the world. Then all the autoimmune symptoms came back with a vengeance and was sick for years. My Liver was very sick and they thought and talked to us of a transplant? Then it cured itself (GOD) and I woke up one morning paralyzed from the neck down. Ambulance and had a c5/c6 fusion using bone from my hip in 1992, was a somewhat new surgery then. I recovered from that the disk and the vertebra had been eaten away and they could not discover why??? I was without even for a long time, just the flares and the liver kicking up sometimes. I have been on I.V. steroids, Methotrexate, Neurontin, Lyrica, so many drugs that mess with your weight, that I was always a 120 lb tiny thing and now this...I am trapped in here (this fat) and I hate it. I had a heart attack last June and they learned I no longer have cartilage in my feet...(the same autoimmune response as the neck in 92?) I have advanced glaucoma, atrophy of the brain, and those nasty white lesions everywhere my CD of the MRI of my back and brain lights up like a Christmas tree, The Neruo called us up and said it is not in her head! It is in her Brain! LOL. I have herniated and bulging disk up and down my spine, L/1 is fractured and C/1 and C2 are basically disintegrating. I see Neuro on the 28th to discuss the deterioration of the feeling in both legs. They said it was MS but now are not sure????

In my family whatever you do you do NOT discuss what is wrong with you. Over the years if I missed a family activity or was 'sick' trust me I heard about it... whomever... My Mom and Dad to whom I was caregiver died with the attitude That I was a weak person; giving in to pain. I was there for the 24/7 for 5 years and really longer but they did not need me like at the end. I am over all of that, I just want you to understand that I understand!

Wow! That is really intense!

I'm so sorry you have so much to suffer through all the time with no warm fuzzy support from your family. Darn it!

The bone deterioration with no medically identified cause reminds me of how much pain I had in my leg bones when I was under huge stress in the 90s. I was going to immolate myself at an IRS office in protest of abuse by IRS. I figured I was already in so much pain that I could do it.

When I tried to kill myself my low B12 was discovered but nothing much was done for many months. Then on Christmas Eve in 1997 a new doctor said that if my mother had pernicious anemia, which she did, that most likely I had it and would have to give myself shots for the rest of my life... too expensive to have to keep coming to the doctor for them.

Okay, so after I'd have quite a lot of B12 replacement the pain in my legs went away.

Take a look at a list of the symptoms of low B12 and see if you are dealing with any or many of them. If you are, you could get the 5mg methylcobalamin lozenges and use a few a day for a month or two to see what difference it makes. I use about enough to equal a B12 shot a day... and mostly that's enough to keep up with the stress. 1mg a day in lozenges for a month equals a shot a month... so I use about 5 or 6 lozenges a day to equal a shot a day.

(((((((((((((tingsdonwrk)))))))))))))
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Old 04-18-2009, 10:32 AM #3
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Oh, I maybe should have mentioned that I was really afraid I was getting something like MS because I was having so much trouble with my legs, I could barely walk. They felt sooooooooooo heavy.

But then there was a bit of relief from the stress and I upped my intake of methylcobalamin and I'm a lot LOT better again.
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